And so it begins with the car parking. Do I find a two-hour spot or drive around the block one more time, ending up in a 9-hour spot for $5? Recalling last year’s visit to the breast clinic, I take the second option.
The sticky, pre-Christmas humidity seeps through my cotton shirt and I wonder if my dyed turquoise timber beads will stain. As advised on my appointment reminder, I am wearing “separates”, chosen with absolute lack of enthusiasm this morning.
After last year’s visit, I didn’t want to return. It was so … so… depressing. All of us sitting there, like skittles in a bowling alley, looking at each other and waiting, wondering which one of us would be the “one in eight” statistic to be told we had breast cancer for Christmas. There had been a young woman crying in the courtyard. We had all seen her.
I find myself sitting back in that lounge with about 30 other women, all of us in the same pathetic state of undress. That is, with our “easy-open” gowns, ready to easily open, exposing our variously sized and shaped breasts. I feel a bit risqué and let mine gape wide open. I have barely anything there save a chafe mark from my running bra. Who cares? It’s not like there are any men around.
In fact, the only sight that really takes my eye is the large photo on the wall of a gorgeous, young blonde woman, snuggling her baby. Her name is Helen. This lounge is named after her. In fact, a lot of things are named after her. It’s unnerving. She is so young. She is so pretty and perfect and has such a beautiful baby. Why is her photo on the wall?
I know why, of course. I know… but I don’t really want to know. None of us do. We all avert our eyes, finding comfort in ageing copies of Woman’s Day or InStyle where we can see photos of vibrant, interesting, living people. Some women chat quietly about their holiday plans. I see the local Tupperware lady.
The “out of order” notice stuck to the instant coffee machine throws me deeper into despair. I hear one woman announce there are problems with the equipment and my heart sinks. I want to get in and get out as soon as I can. I want coffee. I don’t want breast cancer. Get me out of here!
Eventually my name is called and I steel myself for the … the …. I can’t even think of an erudite way to describe what is essentially a “boob squash”. It’s never fun, trying to get my little A/B-cups into those machines. The technician is kind and encouraging. I note the brand new machine is donated by Helen’s foundation. Following the mammogram, I find myself sitting opposite Helen’s photo. I send her a silent thank you. The squashing had really not been as bad this time.
Starting to relax, I feel ready to take on Helen and her photo. I approach it, to look more closely at her gentle, radiant face. You can see how much she loves her baby. She is like a stream of sunlight shining in to the cheerless lounge with its Jatz crackers and water cooler. I read the plaque under her photo. She died of breast cancer, aged 31, the mother of three children. Oh! Oh, I am really shocked. I didn’t really expect her to be so young. It’s not right.
I feel myself get angry then about how unfair it is. I’d known of course. No-one gets a Foundation in their name if they are off at Woolies doing the groceries, do they? But to read her story made me angry. I wanted to shout, “Why her? Why did this happen to her? She has children to care for!”
And yet, I didn’t want it to be me either, or anyone in that room. Somehow though, having Helen there comforted me. I know it sounds mad because I don’t even know her but I relaxed. The day began to lose some of its frustration for me. I decided to just roll with it. I was about to celebrate Christmas and thanks to Helen’s Foundation, I could have this fabulous screening and know with certainty that anything dodgy would be found quickly.
Later in the day, when I was called in to have a needle stuck into my boob, I thought of Helen and what she went through. I squeezed my little tummy roll and gritted my teeth and when the doctor called me later that night, to tell me my pathology was all clear, I thanked Helen again for keeping me company through it all.
To find out more about the Helen Hackett Foundation click here
Jen Williams is an L-plate writer studying journalism at QUT. You can follow her blog here or catch up with her on twitter @jenjwms
Comments
86 Comments so far
my mum is currently undergoing treatment for breast cancer. iv been told I should go get checked. I tell myself I’m so busy looking after my mum, the house and studying that I don’t have time. I think deep down it’s coz I’m scared and I need to be strong for my mum right now. I don’t think either of us could cope if I was diagnosed.
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Dear Guest D, Please go. You owe it to yourself and your family. As in the article below early detection is vital…..once breast cancer spreads there is no cure.
I am off to the Wesley myself today to have my first check. Having a family history of breast cancer I am shitting myself but also keen to get there whatever the outcome. I want the best chance possible.
Please girls, get checked.
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I decided not to have screening when I turned 50 and a friend is fighting breast cancer (not picked up by a mammogram), I thought I would, but I’m the type of person who wants to know what I’m signing up for and I wasn’t satisfied with the information in the brochure or from my GP. I read the open letter from Susan Bewley to Sir Mike Richards – an English doctor with a family history of breast cancer, but she has declined to test and is concerned that the screening program is hiding behind experts, rather than testing the evidence properly. A review is underway; I’ll wait for the final report. I expected my GP to give me a scolding, but she admitted she has also decided not to screen. It seems more women are concerned about this test. I think we also need a review in this country and hopefully, that will happen if the UK study shows there is major doubt about the benefits of testing. Over-diagnosis is a problem with mammograms, that’s a well known fact among doctors, but women have only recently heard about it. I don’t like the secretive nature of screening either, it seems a lot believe women can be kept in the dark, that’s wrong when we’re putting our health on the line and trusting them to give us a balanced overview.
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Thank you so much for this article. I read Jen’s article and then Carla’s follow up about Helen and just cried my eyes out. I just finished breastfeeding my 15 month old about ten days ago and my breasts are really lumpy and at times sore. As my first son self-weaned I didn’t have these after effects and just assumed because my milk was so established that it might take a few weeks to settle. Now I think I will go in and have a breast screening just to be sure…
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I’m a Journalism student at QUT as well!! Go us!
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My name is Carla Haddan and I am the Director of the HELEN HACKETT FOUNDATION.
I just wanted to fill you in on Helen’s story as there are few posts from Jens story about being young and not knowing you can get Breast Cancer so early etc.
Helen suffered continually from mastitis after the birth of her 3rd child and it was during a routine visit to her GP with one of her children that she mentioned to the doctor that the mastitis was being particularly stubborn… following an examination he identified a non tender mass that while not concerning thought it warranted further investigation. Helen then underwent an ultrasound and mammogram and was referred on to a specialist…. The conclusion was that the mass was not at all suspicious and that it was consistent with a breast feeding young mother… the recommendation was that no further action was required and that no follow up was needed…. This was in august of 2003 …. Early in 2004 Helen noticed that the mass appeared to be swelling and when she spoke to her doctor at different times over the next few months they referred back to the specialist’s findings ….
It is a fact that young women who have been breastfeeding can undergo constant changes in the breast as a normal and natural occurrence. In May of 2004 Helen was becoming increasingly concerned and decided to seek further clarification by going to the Wesley Brest Clinic for the first time…. Helen and her husband met with Dr Lisa Erzeitch and Helen was given an ultrasound, mammogram and a fine needle biopsy…. It didn’t take long for the analysis to come back …. Helen had inflammatory breast cancer at the age of 30.
Helen and her husband met with Breast Surgeon Dr Chris Pike the next day… Chris was fairly direct and told them that the news was not good, Helen had advanced breast cancer…When Helen asked him to rate her chances he responded 50 – 50 ……. They then went to meet Dr John Bashford who would become her Oncologist…..He then set out a plan of attack that would start with intensive Chemotherapy the next day….…. The aim of the chemo treatment was to shrink the tumour prior to a mastectomy … It was a very potent cocktail of drugs that usually required three weeks between treatment to give your white blood cells and the body enough time to recover however our Oncologist pushed for every two weeks … the aim was to continue for 6 treatments and then reassess…
At the end of the 6 treatments little or no change had occurred and then a mastectomy was performed and the tumour that was removed was 12 cm and had a clear surgical margin, which was good news and meant the whole tumour was removed, the bad news was that they removed almost all of her lymph nodes and they all contained cancer… Helen then commenced a daily course of radiotherapy that was to last for six weeks combined with weekly Chemotherapy…. As most people are aware the side effects of these treatments are physically very demanding however Helen never complained… the reality is that the physical pain and suffering caused by the side effects are inconsequential if there is hope that it can save your life……..
During the first week of Helen’s radiation the doctors found lumps in the lymph nodes under her opposite arm and in her neck … this had meant that the Cancer had spread across her chest and out through her lymph system… On a lot of occasions during this treatment you don’t like to ask questions because you will be afraid of the answers… Helen’s husband had spent a lot of time talking with Helen’s doctors and researches throughout Australia, Europe and The United States… What we had learnt is that with breast Cancer once it has spread beyond the breast it is technically not curable… Many people live with Breast Cancer in their bodies for years and there are many drugs that can help keep it at bay, but once it has spread it is currently incurable….The realty was that Helen had a very rare and aggressive type of Breast Cancer ….
The name of the game was to control the disease… and at the end of the six weeks of daily radiation Helen continued with weekly chemotherapy … a number of different drugs where chopped and changed in an effort to fight the disease… in December 2004 Helen underwent a series of scans to determine whether or not the Cancer had spread further a field …. Apart from the two lumps in her neck and under her arm there was no sign of spreading ….
Life continued on as normally as possible for the next few months along with the weekly chemotherapy treatment which took up the best part of every Monday … in late April of 2005 it was time for the next scan and the first was a brain MRI …. The result was devastating … the images revealed two brain tumours … the option for treatment was further radiation to the brain this time, however more scans where requested to get a more complete picture for the remainder of the body…. The news went from bad to worse… tumours were discovered in the lungs and liver as well as evidence of Cancer in the bones …. Dr Bashford then told us that he estimated that Helen may only have 3 months left to live…… he also recommended that rather than continue treatment it was better to live out her remaining days feeling as good as she possibly could….
It is possible to argue that it was better that Helen had time to prepare herself rather than a sudden death through some freak accident but it is an incredibly cruel torture for a mother to know that she will be leaving 3 children(including twins) aged 3 and under and won’t be around to guide them and watch them grow….
Helen passed away in the Wesley hospital on the 16th of July 2005… the Cancer that had filled her lungs had finally made it impossible to breathe…
What we have learnt is that once Breast Cancer spreads there is no cure… the best hope to beat it is early detection and wiping it out before it has a chance to spread…
By starting the HHF it was our hope that we can increase awareness and hopefully prevent this from happening to someone else….. Even if you do all the right things you are not totally safe… Helen had a Mammogram and ultrasound and reported changes in her breast but the Cancer remained undetected…. You should trust how your body feels and act on it ……
Helen’s case highlights the great difficulty in early detection in young women particularly when they have been breastfeeding and the breasts have been going through massive change…
After Helen passed away we met with her Oncologist Dr John Bashford and asked him if there was anything that we could get involved in that could have a direct and immediate effect in helping to save lives…. He then arranged a meeting with Dr Lisa Erzeitch the head of the Wesley breast clinic. We discussed the problems with detection in young women and she said that hospitals in America had been getting good results using highly sensitive MRI machines for early detection in young women…….this Digital Mammography machine was on the top of the Breast Clinic’s wish list and it is from that meeting we set about setting up the HHF to purchase these machines in Helen’s memory.
We are now proud to say we have raised over $525,000 and purchased two of these life saving machines for the Wesley Breast Clinic in Brisbane and they are now helping women like Jen Williams.
For further information about the Helen Hackett Foundation visit us at http://www.hhf.net.au or find us on FACEBOOK.
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Had a couple of little things going on with my health so booked into the doctor before Christmas instead of after to have a check up and get a pap smear etc. Pap smear came back abnormal & I had the biopsy done a couple of days before Christmas. Doctor rang me today with news – Stage 1 Cervical cancer. We’ve got it early, really early so that is good. With all of that going on I haven’t rung and booked my breast screen appointment. Will be doing that first thing tomorrow morning. I know some say some of things can be done every two years but for me; pap, boobs & skin every 12 months, no exceptions. I always get a little nervous/scared about these things but compared to not having them done every year well, today’s news proves it is worth facing it rather than putting it off and ignoring it. Now I just got to remember to breath.
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Stage 1 cervical cancer or CIN 1 – just a tip, make sure you understand your pathology result, even get a second opinion. My sister had a treatment after she was told she had “Stage 1 cervical cancer”, she actually had CIN 1, probably irritation from a new brand of tampons. This was a few years ago and now they don’t even refer women with CIN 1 results, they just re-test in a year or so. When you think this cancer affects 9 women in 100,000, it makes you wonder why almost every woman ends up with an abnormal result at some stage, but then the test is unreliable and you can get an abnormal result for all sorts of things, cancer or a real problem is rare. Irritation from condoms, tampons, inflammation, infections, trauma, hormonal changes and even normal changes in young women and menopausal women and older women are much more likely.
Anyway, my sister didn’t need the treatment and the damage resulted in a very early baby and a few other problems. She thinks she was misled by doctors.
It can’t hurt to get a second opinion if there is any doubt about your results.
Good luck!
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This is a timely article for me. Only 8 days ago the doctor found a lump and I was sent the next day for an ultrasound. The radiologist said that it was most likely only a cyst but I was to leave for overseas the next day so I won’t have my ultrasound results looked at by the doctor until I return in another 2 weeks.
The lump is quite big and painful, around 4cm in diameter. I have been told by a friend who works in the field that I can have it drained and then the fluid will be tested to know for sure if everything is okay. Has anyone here had a breast cyst drained and what was the procedure? How long did you have to wait to have the procedure done?
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I have had two cysts drained. They put a local anasthetic into it to numb it and then a small needle to drain the fluid. They do it under ultrasound with a doc in room and two nurses. All in all not a very painful experience however depending on the size of lump to be drained you will be a bit sore the nxt day. Good luck and I didn’t have to wait very long to get it done approx 1-2 wks wait.
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I have been meaning to write to Mamamia for a while now to suggest a topic for an article. Not just Breast Cancer itself but the BRCA genetic mutations. This is my story only, but I would like to tell it in order to help others. Please do your own research, and get your own medical advice.
My grandmother had Breast Cancer in her 60’s (but did not die from it ) and when my Mother asked my Grandma’s GP at the time whether she should consider getting tested for the possibility of it being hereditary in our family he basically said to her “why would you want to know?” so she didn’t look any further into it. Fast forward about 20 years and out of the blue (I still do not know what made me think about it) at age 31 (after having my son through IVF) I asked my mother to consider getting the test. She went and got the test (Through Prince of Wales Hospital in Randwick, Sydney) which involved genetic counselling and a blood test and a few weeks wait to determine her results. She has BRCA1. It is more common to carry this Breast and Ovarian Cancer Gene if you are an Ashkenazi Jew (A Jewish person with European Background) but we are not the only carriers. Please note not all Breast Cancer is Hereditary! Given that my mother was 60 when she found out and had no incidence of Breast Cancer so far her statistical risk was not very high, but on doctor’s recommendation she had her Ovaries removed as Ovarian Cancer is nearly impossible to detect until it is too late. She has chosen the option of being highly vigilant with breast screening. Which means not just Mammograms every 2 years but annual Mammograms, Ultrasounds and MRI’s. I then went and had the test and I also have BRCA1. For me (aged in my early 30’s) the statistics are worse. Although I don’t have to worry too much about Ovarian cancer YET (my risk will rise exponentially form age 40) my Breast and Ovarian Cancer risk in my lifetime is approximately 80-90%. I decided to have my next child using IVF and PGD (Pre-implantation Genetic Diagnosis) and will do the same for all subsequent preganancies/births. My one year old daughter does NOT have the gene, thankfully due to this process! I have had 12 monthly MRI/Ultrasounds/Mammograms but they spread them throughout the year so that I am actually checked every 6 months. I plan to have either my Ovaries out/full hysterectomy when my family is complete/when I am 40, whichever comes first . This is a huge decision which will also include early onset menopause among other things. I am also deciding if I should have a preventative double mastectomy (remove my healthy breasts in case I get cancer). If I have the hysterectomy my breast cancer risk will decrease by around 90% but it is fairly nerve racking going to doctors every 6 months just in case…
I read a fantastic book on the subject called “Pretty is what changes” by Jessica Queller and there is information available http://www.genetics.edu.au/factsheet/fs48
My family was not one where there were lots of Aunties, sisters, cousins who had breast Cancer, across generations but thank goodness my mother got tested, for my sake and my daughter’s.
But my Mother’s first cousin (a carrier) died last year aged 57 from a secondary cancer (she originally had breast cancer) and if only my Grandmother’s GP had not talked my Mother out of seeking information.. More members of the family have since been tested and some are carriers, some are not, some have had preventative surgery and others have also had IVF with PGD (which makes the IVF process even harder, but worth it!!)
I am sorry this is a bit long, muddled and unclear if anyone wants to contact me directly on mands79@hotmail.com please do so, whether it is about BRCA1, IVF with PGD or the decision to have a mastectomy..
Thanks and best of luck to all of you x
http://www.youtube.com/watch?v=NAteUqDt4Bk
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hi,
just wondering if you had seen this post..
http://www.mamamia.com.au/health-wellbeing/got-boobs-love-someone-who-does-read-this-cheat-sheet-about-the-breast-cancer-gene/
must be a terrible situation.
All the best xxxx
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opps wrong one..
I thought there was a post with a similar story – but I must have read it in the paper.
sorry xx
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Thanks no I hadn’t seen that before and it is about the same thing! Mamamia always one step ahead
thanks for taking the time to reply! X
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My girlfriend discoverd she had breast cancer this year only because her sister had it and it was discovered that they also had this Jewish ancestry. She is 41 and making good progress now after a double masectomy (one day she’s “healthy”, the next she’s having her brests removed. Mind blowing!) but if her sister’s diagnosishadn’t prompted the doctors to recommend screening for all the women in the family, my friend would surely have remained clueless about the teeny, tiny, agressive cells festering in her body. Your post is really helpful! I hope people benefit from it.
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Best of luck to your very brave friend! How ‘lucky’ that she found out in time! Can I ask a personal question if you know? Did she have her nipples removed too? That’s part of the decision I will need to make..
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As usual i always took things that step too far, so when i was told i was to teach science and sex education i got carried away with the breast checking techniques/pap smears and from there went to the skin cancer/melanoma checking.
I can’t remember paying for all those checks in the 70′s maybe my medical did. But i found a pre melanoma at 23.
Our bodies are too important to worry about whether a check would be positive or not, or that the checking is painful. I still go every two years, or every year when something shows up.
Statistics show that the earlier you find a cancer the more chance you have of removing it.
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Beautiful article. Thankyou.
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Just had my latest pap smear and the Dr told me they are offering all women 40+ free mammograms in our city. It was like a puinch in the stomach to me, to a) realise I am ‘old’ at 41!!
b) That the dr realised I was 41
c) That i should even be thinking about having one done, I thought they were for 55+
Needless to say the coward in me has not booked an appointment and I don’t intend on it. Too scared of the squashy thing to do it!
But I do check myself all the time. I was thinking I had another 14 years to go until I had to go through with it but it looks like that is not the case!
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In Qld, they routinely offer over 50s (not 55) a mammogram via the public health system and free mammograms for over 40s if requested (ie for lumps). If a lump is present a free ultrasound is provided. They are awkward, but not painful and really don’t take long. I did health promotion inhigh schools and we have fake boobs with different sized lumps in put in them. You really have trouble feeling the small ones.just a thought.
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I’d rather a mammogram than chemo, any day. Hope you work up the courage to go – it could save your life
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YOU ARE NOT OLD! In fact, being 41 makes you WAY too young to die of breast cancer. I just turned 40 and this story ( and my firend’s experience this year – see above post if you can be botherred) has inspired me to brave the boob squash. I’m going to start having mammograms! Join me!
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I think that this is the most beautiful post that I have ever seen.
My grandmother first got diagnosed with cancer when my little cousin kicked her in the breasts as a baby. She then got diagnosed for the second time about ten years later. She then had a stroke to half of her body and died soon after.
If there is any advice that I can give anyone, get checked out – its better to have an operation to remove it than let it ruin your life and happiness.
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This is very well written, although I am concerned about the fear that is spread about how awful mammograms are.
Two years ago I found a lump. My GP sent me for an ultrasound which found some cysts but was inconclusive. 6 months later it was still there so my GP sent me for a mammogram. Becuase of everything I had heard, I was very anxious that it would be painful, and a horrendous experience.
It wasn’t. The staff were very gentle. It didn’t hurt at all. They then needed to do a repeat ultrasound where I had to lie down with my boobs on show for the cutest radiographer I’ve ever seen. tee hee.
Thankfully the lump was hormonal tissue. But please don’t be put off from having a mammogram by the process. It really wasn’t that bad. Yes I was anxious, but I’ve done 8 rounds of IVF and they were worse in terms of having your body on display. And ditto goes for having a pap smear. There a worse things in the world than having one of those!
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I agree re: the pap smear – I was *petrified* of having one the first time, and was amazed at how painless and uneventful it was! Haven’t had a mammogram yet (I’m 30), but now the anxiety is abated
Thank you!
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I wonder how many women do not get mammograms or scans every time the doctor writes out a referral. I don’t. We have access to only one private “imaging” company here in the Adelaide Hills. The staff are rude, the costs are horrendous and you have to pay on the day. I would guess there are quite a few women in my area who just get home and throw the forms in the bin, especially if your doctor has found a lump every year and it has never come to anything.
I get really angry about this, the fact that women in certain areas start out behind the eight ball even getting diagnosed, because the government has lazily allowed some companies to monopolise health services.
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Go closer to the city. its probably inconvenient, but your health is so important and you don’t realise it until its compromised.
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What an amazing story, so wonderfully written. Over Christmas lunch my mum asked me and my sister if we are up to date with our pap smears (sorry not sure if that’s how it’s spelled). I kinda of brushed it off and thought to myself, no I’m not but what’s the big deal. My mum then proceeded to tell me that my uncle (mums brother), who is sick at the moment with a number of different forms of cancer that started with a melanoma a few years back, has the melanoma gene and as family we may too. I tried not to think too much of it, as I usual hover analyze and secretly panic about such things. But reading this story has made me realize how important the early warning tests are. So, as this story is, I’m very grateful you wrote it, because now after new years when my dr is back I will suck it up and go get my pap smear. The silly thing is, the anticipation is far worse than the actual test itself.
Thanks again and I wish you all the best.
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Dear me, my heart skipped a beat when I started reading this as its exactly what happened to me in Jan 2009. I went to a Breast Clinic as I found a lump, they could see it but found another lump that looked highly suspicous. I was the last one left in the waiting room and I knew something was wrong. The Dr told me that they could see something that looked like cancer, I was about only 33. Straight away the surgeon examined me and I was sent to get a core needle biopsy. 2 long days later, back in the surgeons office I got the all clear but only for the time being. I had to have monthly check ups and ultrasounds to ensure the lump was not growing. My surgeon knew that after 6 months I’d had enough so we both agreed it was best to get the lump removed. Thankfully it was only fibrocystic tissue but the 6 months of stress and anxiety nearly killed me. Whilst I am eternally grateful that I could afford to have the ongoing consultations and surgery as a private patient, I do also wonder if we have become overly cautious and if this is contributing to unecessary cancer scares, surgeries and overwhelming stresses for nothing?
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If you were pregnant would you have an ultrasound? That’s not actually testing for cancer. The mid term one mainly just measures growth nd the 13 week one measures the nuchal fold. Which seems more “essential”?
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Err. Ultrasound on her breast.
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I was trying to compare the useful mammograms/ultrasounds for breast cancer to the not really necessary ultrasounds for pregnancy. Most women are happy to have the latter, but are more reluctant to have the former. Why?
I guess I didn’t express myself well.
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Its important to know that the average age for breast cancer diagnosis is still around 60. Despite the media attention given to prominent, young women who’ve had the disease, getting breast cancer at 40 or younger is not common. The commonly stated ’1 in 8′ statistic is a misleading interpretation of the available data. Your chance of getting breast cancer in your 30′s is low. About 1 in 233. As you get older your chance increases. By the time a woman is 85 it is about 1 in 8. So yes you should be aware, but there’s no need to spread panic or have 18 year olds with no other reason to be concerned at their GPs demanding mammograms.
Mammograms are not always the best way to screen younger women as (and some others have stated the same here) the younger a woman, the more dense her breast tissue, the less useful mammogram is. It could very well end up to be a waste of your time. A younger woman or a woman with large breasts is more likely to be successfully screened with ultrasound, which is a lot more expensive, and given the statistics, not warranted unless there’s a strong rationale (e.g. family history, a lump).
I appreciate Jen Williams perspective on having a mammogram but at the same time, let’s balance things out by being really clear with women on what the facts are, and what the practical application of that information should be.
For the record I was diagnosed with aggressive breast cancer at 39 after accidentally finding a lump (and with no family history, no genetic predisposition etc) so I’m no stranger to mammograms myself.
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Really well said @Ricki. I am a 33 year old woman with a family history of breast cancer and lots of little fibrous (so far benign) lumps in both breasts. I choose regular ultrasound despite the cost as I feel that the feedback is better and it is certainly a lot more comfortable process. I can’t fear getting breast cancer as there is no point creating stress about the things you can’t control. All I can do is manage those things over which I do have control, healthy eating, exercise and living as well as I can.
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To put the stats in another context…
By the time you are 85, your lifetime risk of having BC is around 12.5% (1 in 8). This is the one that gets used for marketing all the time because obviously it has the biggest scare factor. nb. Life expectancy for an Australian woman is currently 84. So in other words 7 of the 8 women left sitting around the nursing home, have never had breast cancer.
At the age of 35, your risk of having BC is around 0.4% (1 in 233). Not as scary for marketing purposes I grant you.
Yes, there are always exceptions and statistical outliers. I was one myself. Part of the reason I’ve educated myself on how the stats work is to be able to discuss it with friends of mine freaking out after my diagnosis, and after every news/blog/advertising piece that drags out the erroneous ’1 in 8′ number.
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I’m sorry to hear you have had cancer, and wish you a long and healthy life. Thanks also for the stats about the increasing risk with age.
In reading your posts, I was concerned about your statement:
“Life expectancy for an Australian woman is currently 84. So in other words 7 of the 8 women left sitting around the nursing home, have never had breast cancer.” Um, no, because that statement assumes every one who has breast cancer survives and makes it to the nursing home. And the 1 in 233, or the 1 in 8, is not the outlier or exception, they are the 1…
Nit picky? Perhaps. But while the stats for breast and ovarian cancer might be lower for younger women than for older women, there IS still risk, which can be mitigated by early detection.
Is it responsible or morally acceptable to imply that it’s not so important to be tested if you are younger, because he stats are lower?
It’s not about marketing, it’s about making women sit up and take notice, and saving women’s lives.
You were lucky enough to find your lump “by accident”; others might not be so lucky, and might need that mammogram/ ultrasound/ pap smear for early detection.
Please get tested regularly, whatever the stats are.
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Satistics are statistics. I can tell you though that I am shocked to see the number of women in the chemo centre when I go in regularly. I was diagnosed at 39, two years ago, and during that period I have met countless young women going through the surgery, radio and chemo turnstiles. My only regret at this stage of my non-curable disease is that I wasn’t paranoid enough. If I had been, I may have stood a better chance at seeing my kids go to high school.
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Very sorry about whats happening to you. Of course the stats don’t tell the stories of the individuals who DO get a positive diagnosis.
I remember seeing a heavily pregnant woman coming in for her chemo same time as me and thinking that I was only barely coping…imagine being pregnant at the same time! There are some very difficult stories out there.
As it happens I have a sister who is terminally ill (different cancer) and has kids and I know how stressed she gets about their future without her. She’s been lucky in that she was given 3 months to live…2 years ago! I hope the outlook improves for you.
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After a few bad experiences with GPs, I always go to the Sexual Health and Family Planning clinic for pap smears. It’s the best. The doctors are lovely and understanding and explain everything. They know how to deal with any issues (for example gynecological exams really aren’t fun when you are a survivor of sexual assault and GPs can be horribly ignorant and offensive about this topic).
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Great post and a timely reminder that no one is exempt from any disease regardless of age or circumstance.
One thing though and this is not the only article that’s done it but….”the mother of three children” so does this mean her life is more important? It irks me and there are plenty of articles that do it but having children doesn’t up your life worth, just like not having them doesn’t make it plummet, all life is precious, whether you’ve reproduced or not.
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It does mean that three kids are going to grow up without their mother, which in itself is a tragedy.
I don’t think it was a comment on the worth of her life over others, but her kids would be central to her life and death both to her and her family, that’s why it’s mentioned.
You may be reading too much into it.
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Took the words right out of my mouth, MJ. Remember Jane Hibberd’s post just last week about her dad dying young? Or JJs post a month or so ago, about his father dying? It seems that Helen’s kids are so young that they may not even REMEMBER their own mother, and that’s a tragedy right there.
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I feel the same, don’t tell me I’m worth more or less because I have or have not had kids. But I do agree that the impact on children losing their mother would be huge and is a tragedy. As it would be losing a sister, cousin or friend…….
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No, losing your mother is different, especially to a child. But you are not worth more or less because you are or are not a mother.
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this is not about her being a mother, this is about children growing up without her mother.
you ask anyone here who lost their parents early, it is a tragedy and worthy of mentioning.
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Also don’t leave the pap smear thing til a certain age or sexually active. When my gyno found my very early cervical cancer (incidentally at my 6 week post natal pap) he told me nuns die of advanced cervical cancer because of this very misconception. Take care of your health, girls. I think of it as no more unpleasant than a brazillian?
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Also my sister in law had her breast off at 32 – found a lump Wednesday, breast off on Friday. That was 13 years ago and she has had a reconstruction since, and fortunately enjoys good health now.
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um wouldn’t nuns still be recommended to get it after turning 18?
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Really? Wow, every time I to go the doctor to get my pill prescription, they (I very rarely see the same doctor) ask me if I am due a pap smear and I tell them that I am not sexually active and then they tell me I don’t need one then… This is a number of doctors, not just the one.
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I don’t think this is quite correct about the nuns. They isolated HPV as a precursor to cervical cancer simply because nuns did not ever show HPV on pap smears.
If you have never been sexually active you cannot have HPV ergo no risk of cervical cancer.
The 1 in 8 stat is the same for men with prostate cancer, 1 in whatever at 85. Most men over the age of 85 has some form of prostate cancer (if they are still alive).
The young women with breast cancer and negative outcomes are the tragedy and therefore the ones that will be used in media awareness etc.
I had cervical cancer and a total hysterectomy at 28 but I had 3 children by then. The irony is my 30 year old daughter has it but unfortunately has not any children as yet. The treatments today are much better than when I got my diagnosis. Her treatment is keeping her options alive for a pregnancy. I did not have any choice.
Off topic a bit, sorry
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HPV is NOT THE ONLY WAY YOU CAN GET CERVICAL CANCER!!!!!!!!!
Nuns can get cervical cancer. Non sexually active woman can get cervical cancer. Woman who have the gardasil vaccines can still get cervical cancer. HPV is a very common way women develop cervical cancer but it is by NO MEANS the only way. I work in cancer research at peter Mac…. You need to get pap smears when you become sexually active or from age 18 (which ever occurs first) … Your misinformation scares me!
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Also, I have a friend who was sexually active before she was a nun. Some people receive the call later in life.
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Thanks for posting that.
My hair stood on end at: “If you have never been sexually active you cannot have HPV ergo no risk of cervical cancer.” WTF? Where did that come from?
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HPV is linked to cervical cancer, no HPV = no risk of cervical cancer. Women not yet sexually active cannot benefit from pap tests. Sadly, women in this country receive very poor information on cancer screening. No country in the world has shown a benefit pap testing women under 30,
(Ref: “Cervical cancer screening” in Australian Doctor, July 2006 by Assoc Prof Margaret Davy and Dr Shorne) but all have evidence of harm. Young women produce the most false positives. You can pap test every young woman, but sadly, it makes no difference to the tiny death rate.
Australia’s program is now about a decade behind the evidence – it was always excessive, but now needs urgent review. Two yearly testing is OVER-screening and that greatly increases the risk of a false positive and potentially harmful over-treatment or unnecessary biopsy for no additional benefit over 3 yearly and only marginal benefit over 5 yearly. The Finns have the lowest rates of cc in the world and send the fewest women for biopsies – they offer 5 to 7 tests, 5 yearly from age 30 – the Dutch have the same program and their women are also now using the Delphi Screener, the self-sample HPV device – the Dutch are also about to move to 5 hrHPV primary triage tests offered at 30, 35, 40, 50 and 60 and only those positive will be offered a 5 yearly pap test. Those negative can follow the HPV program or if monogamous or no longer sexually active might choose to stop all testing and revisit the subject if their risk profile changes. Only 5% of women are HPV positive by age 40. This will greatly reduce testing, false positives and over-treatment.
Our GPs receive target payments for pap tests, IMO, this is unethical and a potential conflict of interest. (PIP scheme and Financial Incentives Legislation)
Our doctors should have walked away from this program years ago and put our interests first – we are some of the most over-screened and over-treated women in the world – cervical damage from excess procedures and especially cone biopsies and LEEP can lead to infertility, high risk pregnancy, premature babies, cervical stenosis etc…
The lifetime risk of cc is 0.65% – take out false negatives and fewer than 0.45% can possibly be helped by testing – our lifetime risk of referral after an “abnormal” pap test – almost all are false positives, is a massive 77%.
As a low risk woman my risk of cc is near zero, I made an informed decision not to screen almost 30 years ago.
I thought I’d have breast screening, but over-diagnosis is a major concern and the benefits are controversial. Unfortunately, all real information is suppressed here, so I’ve relied on the UK and elsewhere for my information. The UK, thanks to some amazing advocates for informed consent in women’s cancer screening like Prof Michael Baum and others, have forced the NHS to do a full review of breast screening. Recent research suggests the fall in the death rate is about better treatments and not screening.
Our screening programs are paternalistic and that is unacceptable – we all have a right to balanced information so we can make informed decisions about testing. Men are treated very differently – they got risk information very quickly for prostate screening and doctors were reminded to obtain informed consent. A double standard seems to apply…
Women under 50 should be very careful with mammograms – there is an excellent decision-making aid for women aged 40 to 49 – it’s online and was produced by our Dr Alexandra Barrett. I made an informed decision to pass on breast screening – for anyone interested in a complete overview of the evidence – the Nordic Cochrane Institute have produced, “The risks and benefits of mammograms” – it’s at their website. They criticized the brochure produced by Breast Screen in Australia and in several other countries.
Screen or don’t screen, but at least do some reading and make an informed decision. It really is quite disgraceful that women have to go looking for the facts and evidence and that the “information” we receive is unbalanced, incomplete and IMO, is also misleading.
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What are your qualifications Elizabeth? (serious question, not a “smart” one).
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I found a lump in my breast when I was 32. It was just a cyst and I was diagnosed with fibrocystic breast changes which required 2 yearly mammograms and ultrasounds, just to be sure. In 2008 I was so grateful for the breast clinics insistence on the checkups as they found a cluster of atypical cells that progress to cancer – I didn’t even have a lump at that stage, an area of my breast just “looked funny” to the radiographer and she suggested it be biopsied. If you are unsure or just want a check up, talk to your GP and get a referral. I pay to go to the Wesley Breast Clinic in Brisbane, but I think it’s worth every cent!
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I lost my beautiful younger sister to breast cancer when she was only 32, luckily she didn’t have children but she did leave a husband and her family behind asking ‘Why’, it’s relentless and has no specific criteria so the earlier you can check the better. Thank you for sharing this story with us.
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How old do you have to be to have one? First one? Pap smear is since sexually active or 18 whatever comes first every 2 years. What about mammogram
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I’d like to know this as well. Also can somebody please bully me into having my papsmear? It’ s not that I don’t want to but I’m magnificently effective at putting things off.
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as someone who has had cervical cancer please go and have a pap smear – yes it is a little awkward and uncomfortable but JUST DO IT!
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Big tip for increasing comfort during your pap smear = when nurse/gp starts to insert speculum, slowly breathe out through your mouth. It naturally relaxes your muscles. Or concentrate on wriggling all your fingers as it has the same effect.
Can also do these things while having injections or mammograms. Tensing your muscles increases pain and discomfort.
Best bit is to reward yourself with a coffee and a movie
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I’m with you there Susan As Well – breathing out relaxes your muscles. I was a bit overdue for my pap smear this year and once I had it done, I felt a massive weight off my shoulders. Also I have a lovely female doctor – I am just more comfortable with her and it makes the whole process much easier.
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Its actually really easy your normal GP can do it. I prefer a female but its up to you. So next time you go to get a prescription or certificate for your sick day at work (naughty) just ask if they can do it. I think you can claim off medicare too. Its all over very quickly
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Better to mention it when you book the appointment though, so they make it a slightly longer one.
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Think of it this way: yes it’s a bit embarrassing and uncomfortable. Definitely not the most fun you can have. BUT dying of cervical cancer would be infinitely worse so just suck it up, put on your big girl pants and just do it! There. I’ve said my bit!
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Oh God. I really need to book in and have a papsmear done too. I’m 24 and have never had one… Eek.
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Really???
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You can go to the Breastscreen NSW buses for free at age 40, although they don’t send reminder letters or do marketing at you until you’re 50. My mum had a near-miss a couple of years ago – it went as far as a lump biopsy, but pathology was clear – so I made an appointment for the bus when it was in a nearby suburb a few weeks later.
I have my mammogram and my pap smear coinciding. At first it was chance, but it works well to have an annual ‘grease and oil change’ at a set time.
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I’ve been going since I was 18 when I just wanted to get a smiley sticker for good health only to find out I had some issues that needed to be fixed which I cant remember what it was now but if I had left it any longer things could be more serious than they were!
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Be bossy and pop the speculum in yourself,always get the angle right that way and so not painful!
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Book one for next week
. Honestly the wondering ‘what if’ is 1000x worse than the actual process, then if you are all clear you don’t have to have another one for 2 years. It’s not that bad, maybe a tad uncomfortable but that’s it.
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Hi Hayleyjane,
As your friendly Internet bully, I am withholding all chocolate and wine from you until you get one. Oh, and if you don’t ring up for an appoinment this week, I may have to flush your head down the virtual toilet and give you a wedgie
Seriously, the anticipation is far worse than the actual event. You’ll feel really proud of yourself when it’s over and even if you feel too young to be thinking about having kids right now, I promise you that you really don’t want the option taken away from you later. I’ve had early stage cervical cancer and early detection is SO important. Now, pick up the phone!!!!!
P.S. Even if you do get a less than perfect result from your smear, don’t panic – it’s often a bit like the dentist: there may be issues to deal with, but it doesn’t mean you can’t eat anymore!
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Oh the kid thing did it!
Will call and make the appointment tomorrow! Thank you everyone!!
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(See my comment above.) You can make an appointment for Breastscreen NSW, either their head office or a caravan, for free at age 40, although they don’t market to you or do reminder letters until you’re 50.
If you have a reason to want one younger than that, eg you find a lump or have a family history, just ask your doctor for a referral to a breast clinic.
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Women under 50 need to be mindful that mammograms may not necessarily pick up an abnormality as the younger breast tissue is more dense making it harder to scan. Regularly checking your breasts yourself in the shower etc is very important & any concerns should be brought to a gp’s attention.
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I mentioned this in reply to a comment above, but really? I am 26 and am not sexually active and am on the pill (for health reasons). Every year when I see a doctor (not the same one, I’m yet to find a GP I like) to get my new pill prescription they all ask if I’m due a pap smear and I tell them I’m not sexually active and EVERY SINGLE DOCTOR has told me that I don’t need one then…
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Anon if you have NEVER HAD SEX you should be fine without a pap smear BUT the recommendation is over 18 or sexually active.
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Well written article as I have missed several appointments and need to re book in the new year. I was in the room and felt all the anticipation. Just what I needed to read. Bring on my appointment and stop procrastinating.
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Very well written, I recently had a skin cancer scare and removal of an aggressive litle sucker as I like to call it. When I was researching the particular skin cancer I found a beautiful lady called Marie who had passed away from malignant melanoma aged 31. She left behind a beautiful family as well and all I could think was why does this happen and how much she helped me roll with the punches and appreciate what I have and how lucky I was to just have a ‘scare’. So glad your results are clear and thank you for putting everything into perspective again.
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Oh god I am in tears!! I am 31 with 3 kids!! Do I need to be having mammograms? Or is it only I I find a lump?? I thought I was years away from this??!
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I thought the same thing!!!!!!!!
I was told from age 40..
Such a beautifully written story. I felt like I was in the room with you. x
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My understanding – not as a doctor, just as a woman who has asked her’s – is that mammograms are not particularly useful on young women because our breasts are more dense. The most important thing is to become familiar with your breasts, and if you notice changes see your doctor.
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Unless you have a family history of breast cancer, mammograms normally start from the age of 40. You do need to continue regularly checking your breasts for lumps or changes. If you are worried though a dr’s visit couldnt hurt. Enjoy those beautiful kids
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My GP told me that with most women it starts from the age of 50, unless there is a history of breast cancer in the family, My mum had it, and even though there are no other female relatives who have had it my GP wants me to start from the age of 40.
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You are. There are a lot of young women with breast cancer who have generated a lot of publicity about the issue (Kylie Minogue, Christina Applegate) but it’s actually unusual. A doctor once told me that under age 40 (if I remember rightly), the chance of finding cancer is even less than the risk of the radiation in the machines causing it.
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beautiful, beautiful post.
thanks for sharing your experience i am so glad that your results were all good.
what an amazing legacy that helen hackett has given us.
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