What Are The Issues Facing Younger Women With Breast Cancer?
Poster Presentation BCY1 Conference 2012
Being diagnosed with breast cancer at any age is an overwhelming and frightening experience, but being diagnosed with breast cancer when you are a younger woman brings its own unique challenges.
Facing a cancer diagnosis and undergoing treatment at a time when a young woman is typically focused on establishing her career, studying, dating, getting married or starting a family affects her in a variety of psychosocial and practical ways. She may feel isolated and alone as she comes to terms with fertility issues, early menopause, changing body image, maintaining a career while undergoing treatment, insurance issues and financial concerns.
In November 2012 I attended and presented at the first Breast Cancer in Younger Women BCY1 conference, which was held in Dublin, Ireland. BCY2 will be held in November 2014 in Dublin and I am hoping to be able to attend again this year.
There is a possibility of contributing to a session with the preliminary title of ‘Conversations with Younger Women with Breast Cancer.’ with the aim of educating health care professionals on the conversations they could be having with younger women. If you have been diagnosed with breast cancer under the age of 45 your answers to the following two questions would be most helpful.
1. What top three things would you like health professionals to be discussing at a conference about young women with breast cancer?
2. What top three things would a young woman want nurses to think about when caring for them?
I am looking forward to hearing your answers and thank you in advance for your input to this important discussion.
Health care professionals
1. Curing and better treatments. Young women are at a huge risk of not getting rid of the cancer.
2. Better scan options. It’s crazy that I would be expected to have a mammogram every year from twenty-something onward
3. Being realistic with treatments – before throwing chemo at us, check its impact on the removed tumour, explain and be proactive about the more intimate side effects. Balance quality of life with approaches – there is a lot of life left to live. (Etc)
Nurses to think about?
1. We are scared, a smile goes a long way.
2. We know our bodies, veins and reactions, so check in with us.
3. I found being patted and touched during the scariest moments to be hugely reassuring.
These last three have nothing to do with being young. Hmmm… I know, they can help us from feeling like an outsider by maybe placing us near other ppl our age in treatment? Or at least not emphasising how strangely young we are.
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As a young woman diagnosed with breast cancer at the beginning of the year while working for a breast cancer charity I feel I have seen the horrible effects of the disease from policy makers perspectives as well as from my own personal experience. For younger women there are many unique issues in fighting breast cancer but one stood out for me in particular. I believe many health professionals struggle to deal with the issues of fertility. I felt a lot of pressure to undertake fertility treatment before my chemo began. I felt that my surgeron and breast care nurse were simply wanting to follow procedure and tick a box rather then really listening to my concerns. After researching and speaking to specialists through the charity I worked for I choose not to undertake fertility treatment however I believe other young women are not being given all the information they need about fertility treatments to make their own informed choices. I was actually told by my breast care nurse that even if I could have children it might not be best due to the risk of breast cancer returing while my chemo nurse and oncologist said the opposite! I believe health professionals therefore need more information and training on this topic.
Hope this helps! Feel free to ask any questions!
Thanks Kirsty
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Thanks so much Kirsty, this is very helpful
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Thank you so much Catherine – your comments are very helpful indeed! I absolutely agree with you about throwing treatment options at a newly diagnosed patient without fully explaining the benefits vs risks and potential side effects. Your last point is so important too. Never underestimate the power of a reassuring touch or a kind word to make all the difference to a patient. Nurses have a powerful role to play here.
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Marie,
Thanks for beginning this important conversation! As a young survivor, and a navigator for young women with breast cancer, I am passionate about this topic, and can’t wait to hear what young women tell you about their needs.
As for me, here are my top 3 things I would like to see discussed at conference:
1. Reproductive health issues surrounding bc treatment: Fertility preservation, pregnancy after breast cancer, and menopausal symptoms.
2. Quality of life/survivorship issues – including body image and sexuality concerns, changes in which are rampant and often unaddressed in young women with breast cancer.
3. Novel treatments for triple negative breast cancer, more common in young women, and for which treatments options are more limited.
And what I would want nurses to know about me/what I want to know about my patients:
1. That, for a time, she may be hounded by the question “why did this happen?”
2. That many young women whose families have been affected by gene mutations and/or familial syndromes, or who have suffered similar losses, this diagnosis will be a trigger for increased anxiety and fear, grief of past losses, and anticipatory grieving.
3. That a mother’s terror at the prospect of leaving her children motherless may be completely unrelated to her stage of disease.
4. That survivorship is individual, and there is no “right way” to survive, take up the cause, or not, self-identify as a survivor, or not….
5. That there is life after this diagnosis and treatment; that she will be changed by the experience, yes, but that it will not always feel this shocky and scary and awful; that she will learn to live with the changes and the fears and she will laugh and sing and jump for joy again. 6. And that we are here to help her not just survive this disease, but to thrive as well, and that we will be with her every step of the way.
Great questions – can’t wait to follow the discussion! Will be crossing my fingers that you’ll be in Israel in November~
Beth
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Very good points, Beth. I want to give a extra cheer/vote for developing treatments around triple negative breast cancer. This is huge.
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Beth, thank you for taking the time to leave such a comprehensive answer to my questions. This is super helpful. Number one for me was lack of information on fertility preservation.
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Hi Marie,
I know when I was diagnosed first time with breast cancer, a couple of years later I attended a Younger Women’s Breast Cancer Forum which was organised via Breast Cancer Care in the UK. The one thing I wanted to do was to connect with other younger people, especially women with children (I had a 5 month old and 2.5 yo when diagnosed at 38) as I felt isolated and it was always an ‘older women’s’ disease. I met and forged friendships there. It was amazing to be able to talk to other like minded women. The forum was excellent and covered many of the issues that people have mentioned and highlighted here. There was a reconstruction surgeon to discuss options. There were professionals in various areas, diet, exercise, yoga, sexual awareness, relationships counsellor, body image, fertility etc that you could listen and talk to. They still run them now. I agree with everything that’s been said. It don’t think I could limit it to 3 things. It’s such a complex situation for younger women. In addition, I think one of the things that anyone with breast cancer should be made aware of if what to look for if there is a recurrence and to broach the subject of secondary breast cancer. It’s a very scary subject but something that is shied away from but awareness again is everything. Also what scans etc should be done regular. Knowing that they are getting the right checks can help with people anxiety and worry. The professionals need to give everyone the same care as I have found people who don’t get the same from one hospital to the next.
Take care and tweet you soon! Jo x
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Thanks so much Jo for taking the time to comment. I still remember the sense of isolation I felt when I was diagnosed age 32 – I found support online but there is nothing to beat meeting a sister traveler in person
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For sure 🙂 x
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Four years ago, at a National Breast Cancer Conference for African-American survivors, I was shocked by the number of young women, under 40 and as young as i20, that had been diagnosed with Stage III and VI cancer. Has anything been done to provide insurance coverage for mammograms to those under 40?
Also, though I am a six-year breast cancer survivor, I did not find out until reading a blog last year, that even though my cancer was Stage 1 — “20-30% of people initially diagnosed with early stage disease will develop metastatic breast cancer” (mbcn.org).” Until reading this, I was living under the assumption of a five-year survival and no future cancer problems.. I was told by my oncologist, a highly respected physician in the city where I lived) that my survival rate was 96% during the first five years. Nothing mentioned about the 20-30% recurrence. I know of other breast cancer survivors and their loved one are operating with this belief. Sorry, for the running on, on and on; but these two issues really concern me.
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Oh please Yvonne, no need to apologize! You make some really good points about survival rates. It is interesting that you learned this via a blog – I am constantly amazed at how much we can educate each other through social media – we find out so much more this way than we ever hear from our docs!
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1. What top three things would you like health professionals to be discussing at a conference about young women with breast cancer?
– menopausal and sexual changes/issues
-long term side effects from chemo/radiation and other treatments
-reconstruction options
2. What top three things would a young woman want nurses to think about when caring for them?
-that we are worried about our children/families if we are to die (not so worried about ourselves)
-that we want to be able to function as a wife/mom/etc…during treatments
-survivorship and followup care that is individualized
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For nurses – please do not pathologise my anxiety about being in hospital or my tendency to be hypervigilent about pains. Instead please sympathise with me and validate my right to be scared. Remember that I am a mother, a daughter and a contributing member of your society and that my life is valuable just as yours is.
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You pose some very interesting questions indeed and I hope that you are able to attend the conference to be able to discuss them further.
1. What top three things would you like health professionals to be discussing at a conference about young women with breast cancer?
Consistency of care: women talk, especially those who are active users of social media. That’s why I strongly feel there should be both more consistency in treatment decisions from one hospital to the next and more explanation of the treatment decisions made. Every cancer is different, but that doesn’t stop women wondering, for example, why some stage 3 patients get a bone scan as standard whereas other don’t and why one person might get 14 rounds of chemo while another may qualify for six. Even advice over something as simple as whether or not a woman should wear an underwired bra after breast surgery seems inconsistent.
Fertility: when diagnosed, my mind immediately turned to my ability to conceive in the future. I wrote a feature about the experience for a charity and have since heard from women who thought it would be too dangerous to go through fertility treatment (especially with ER positive cancers). I believe every woman should be given the chance to preserve their fertility and make an informed decision about their future.
The future: the media constantly bombards us with content about how we can actively prevent cancer from coming back, but treatment for cancer seems to revolve around immediate treatment rather than lifestyle changes. If there is real substance to a lot of what is being communicated, it needs to be factored in to every treatment plan provided to patients.
2. What top three things would a young woman want nurses to think about when caring for them?
A focus on the mind as well as the body: in many ways, while relentless and painful, the treatment is the easy part. I think hospitals are often so busy treating that they sometimes forget that the mind needs time to heal too. I have been really lucky with my care, but there have been difficult times. For example, after DIEP reconstruction surgery I was left in front of a mirror with my nightshirt off to wash myself with no warning. I was shocked by the scarring with no one to talk me through the changes and how amazing they really were.
A focus on the individual not the cancer: I have been blessed with amazing care, but there were a few occasions where nurses didn’t take any time to understand me and how I might respond to certain messages. I am a naturally positive and motivated person and to be told not to turn myself into a victim before I had even said hello at one visit, was quite upsetting. I believe nurses should aim to get the best out of their patients so they can stay positive and heal well.
How cancer treatment can fit into life: as a young woman I am always being told to keep going, keep working, keep fighting. Trouble is, the treatment plans and care pathways don’t really take this into account. Cancer is still very much perceived as an illness for older people, so why can’t there be more consideration around appointment times and support for younger people, so they can keep going? Or, more of an acceptance that the commitment in terms of appointments and treatments means it is not as easy for us to carry on as normal.
Hope this helps.
Good luck with compiling thoughts.
Jackie
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Jackie, these are fantastic comments. I really appreciate you taking the time to answer these questions. I agree so much with you regarding consistency of care – the number of times I’ve seen and heard of inconsistency has truly been shocking. Our treatment should not depend on whether we’ve been lucky or unlucky enough to be treated by a certain doc or at a certain treatment facility. There absolutely should be standardized care across the cancer continuum.
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I was diagnosed at 29, I’m now 45 and feel very fortunate to be healthy. A lot of the points mentioned above I can totally relate to. One of the things that really helped me was joining a breast cancer support group. Once all my treatment had finished I felt very isolated and scared. Hospital appointments, while a nuisance at times do offer a security blanket of reassurance. One of the breast care nurses gave me a bunch of leaflets and amongst that was info on a local support group. While a large majority of the women there were older than me there were a couple under 40. I 100% agree with the comment made about the nurses just smiling and a reassuring pat or touch, the human element of carers is such an important part and it’s something I would like to see grow. I’m fortunate in that any of the health professionals i encountered during my treatment were all fantastic but I know it’s not the case for everyone.
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Hi Joanne, I appreciate you taking the time to share your experience with me. It is good to hear that your interactions with medical professionals was positive – sometimes I think we hear too much about the negative experiences, so it’s good to celebrate those who make a positive difference. Wishing you continued good health as you journey beyond breast cancer.
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I was diagnosed at 30, I’m now 33. I’d like health professional to discuss the effects of surgery and hormone therapy on young women’s sexual life. As for nurses, I cannot think of anything in particular. Maybe because all the nurses looking after me have been just wonderful, more than doctors.
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It’s wonderful to hear your praise of nurses and thank you for your comments
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As I am reading your conversation, I really learned a lot. Thank you that I found this blog. Awesome! Keep posting about breast cancer. 🙂
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In General:
1. Mothering with Cancer: No one talks about this!!! Oftentimes during chemo I felt like a scarecrow mother. I was so ill or tired the very best I could do was prop myself up on the couch, but there’s got to be a better way.
2. How to Talk to Your Team: I think a lot of women struggle with how to articulate their needs and wants when it comes to their treatment.
3. How to Handle Fear: I also think a lot of women are scared and suffer from anxiety during diagnosis. Maybe some tips for how to deal with this.
For Nurses:
My best nurse was a lady named Irene. The reason why I liked her was because she was very knowledgeable. Every piece of advice she gave me was accompanied by facts. She also bent over backwards to make sure I got my treatments on time, so I could tell she really, actually cared about me. She showed empathy, she was gentle and polite–I really could not have asked for a better nurse.
Things nurses do that drive me crazy:
1. Forget about me. (District Nurses)
2. Deal with me in a hurry. (District Nurses)
3. Offer personal judgements and opinions. I don’t want to be judged by you, and I really don’t want opinions on my ways to improve my life that are not based on facts.
4. Discourage someone from making positive life changes. If I say I want to eat healthier or exercise more the correct response should be something like, “Yes, good idea,” and not something like, “Oh, I wouldn’t worry about that if I were you.”
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Mahalia, thanks so much for such a comprehensive answer. I really appreciate you taking the time to do this.
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So helpful Mahalia. Mothering through cancer must be so hard. I wonder if we know how best to support or advise women with this.
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My 3 issues
1) Self esteem after surgery: This is important for women of all ages but I feel it’s particularly so with younger women (I was 40 at diagnosis). After treatment, your self-esteem very low and it’s difficult to discuss it with people who’ve not been through it.
2) Sex/libido: The effect that treatment, surgery, medication can have. Linked to point no 1.
3) Explaining to young children about cancer – how much do they need to know?
The nurses I had during treatment were fantastic, I had their mobiles and could text them with question and concerns. The support during treatment was great, but once you’re ‘better’, you’re ‘on your own’ and I found this difficult – it was like a security blanket being taken away. In hindsight, I should have maybe done some counselling. None of this is the fault of the nurses, they are just so busy with new patients that they can’t be expected to check up on the ones who have finished treatment but there is a gap between being sick and well that many fall through…
I hope this helps.
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Issues
1) Self-esteem – it’s not that this doesn’t affect all ages, but I think appearance is more important for younger women. Post-surgery, post-chemo, post-cancer, self-esteem can be extremely low and it’s difficult to discuss with people who have not been through similar.
2) Sex/libido (or lack thereof) during or after treatment/surgery/ongoing hormone tablets.
3) Talking to children about cancer – how much they need to know.
I found the nurses fantastic during my treatment. I knew their mobile numbers, could text with questions and they were so supportive. But then you’re ‘cured’ and suddenly you’re on your own and there’s very little support – or that’s how I felt. It’s not anyone’s fault, the nurses have to move on to new patients but I remember feeling as if my security blanket had been ripped away. In hindsight, I should have done some counselling – I know there are support groups but I didn’t follow up on this.
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Thank you so much for commenting on this. It is really helpful to point out where you had good care and where you might have benefited from more help. i wonder did the nurses deal with the three issues that you raise?
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Points no 1 and 2 become more prominent after treatment so would not have discussed much of this with the nurses. I don’t think the nurses would have had the time either, they are under incredible pressure, they do an amazing job. In an ideal world, with plenty of resources, I think there should be a referral service maybe post-treatment for ongoing care, counselling, etc that nurses could be involved in….
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The fact its so common! I felt very alone and thought I was one of so few young girls (30) which I have found im not, to discuss the stages and details as soon as diagnosis. …I didnt no what was coming next in regards to ops and treatment. ..or what lymphnodes etc were giving a little more control over the process possibly, thirdly to be spoken to about the positive side to this dreadful disease….how treatment of today is advanced, how you can keep your dignity, pride, body image, beauty and youth throughout with todays make up, wigs etc
2nd question…..empathy is much more easier to take than sympathy or pity. To discuss young groups to join of ladies where we have similar interests and more in common such as babies and social side. I would also say to look at wards and cubicles and try to place young ladies together. I was more upset listening to grandparents at the dining table crying after a mastectomy pleading to see their great grandchildren grow up whilst im comforting her my mind has heart breaking thoughts such as…gosh if only…I just want to see my babies grow I cant even think about grandchildren! Hope my answers are ok. Regards.
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– that sticking you for your operation on a Gynae ward because it’s all women bits is so wrong
– to not treat me the same as an older woman with breast cancer, I have kids so getting to hospital for 7am is not do able when breakfast club doesn’t open till 8!
– that if I get an infection during chemo I do not want to be put on any old ward that will take me when I have no hair and the nurses have no clue! There’s a cancer unit there so why not use it!
In regards to nurses the breast care nurses are amazing where I had my treatment and are always on the end of the phone.
– more nurses specially for breast cancer are needed
– ideally a breast cancer nurse to be on your ward after your operation
– remember I’m a younger woman with breast cancer so treat me that way, not the same as a 70 year old fog through it.
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Think about plans for regular mammograms after the 5 years. Mine finish at 40 when asked what happens after that it hadn’t been thought of. They said regular screening programme so a 10 year wait then?!
better mental health services for entire family.I got no support and had to fight for my young children to get help. One later got diagnosed with a psychosomatic disorder.
Support and encouragement for women who choose not to have reconstruction.
Everything is geared around telling young people that they need to go through this major surgery where in fact there is a choice and many young women like me are happy to live with a prosthesis.
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Second question
sorry technical issues.
In my experience if you get admitted into hospital there is no specialist care outside of oncology so if you’re seriously ill with an infection overnight the standard of care is poor. A&e don’t know how to look after cancer patients. I got dumped in all sorts of wards with no specialist care in some cases very poor care. 24/7 cancer wards in every hospital for me.
better after mastectomy care. I got send home 24hours later in tears with tubes/drains in back to a young family with a softie shoved in my bag in a cupboard.
Better access to mental health services if needed.
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For doctors to discuss,
1 – preserving fertility
2 – is chemo necessary? Why can’t those eligible have the oncotype DX test on NHS to help make the decision.
3 – quality of life post diagnosis and treatment. Ongoing therapy and monitoring. Is there anything to help the side effects of early menopause.
For nurses:
1 – take partners to one side and speak to them individually about diagnosis. They don’t want to worry us.
2 – give us time, this is a big thing.
3 – give us a hug, remember our names and treat us as if we’re special. I felt like I didn’t belong at oncology as I was the only young one there
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We really appreciate that you all took the time to leave such comprehensive answers. Clearly, there is a lot that needs to change in the treatment of younger women with breast cancer.
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