To chemo or not to chemo

CellyKCellyK AdelaideMember Posts: 23
Hi there, any thoughts on this would be appreciated.  
My early breast cancer is:  no node involvement, no blood / vascular involvement detected, HER2 negative.  I've had a complete single mastectomy.  The invasive mass was 10mm, grade 3.  But there were also 3 non-invasive, (grade 2 or lower / DCIS) masses of ~5mm size.  I have smaller, dense boobs - so they took the whole thing.  

Now, I've been told that my 10 yr prognosis with hormone therapy is 83-88% depending on how they describe the mass - which as you see - didn't fit neatly into categories.  Chemo would only add 2-3% to that - maybe.  Whereas there are all sorts of short, medium & long term potential risks with chemo.  So my initial gut reaction was - hell no.  The oncologist says I'm really 'on the fence' as to if chemo is worth it at all.  She's left it up to me.  I'm pretty sure I'd rather invest in nurturing my body - you know, fitness, good food and stress management, which could equal the 2-3% benefit anyway.  I know there's no guarantees either way.  Anyone been in similar situation??
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Comments

  • CellyKCellyK AdelaideMember Posts: 23
    I forgot to mention it's hormone receptor positive.
  • ZoffielZoffiel Member Posts: 876

    Hi @CellyK

    There has been a great deal of discussion about this over the years. It is a really tough personal choice and the risks and benefits are hard to weigh up, particularly when the statistics suggest improvements in survivorship are small for people in your circumstances. Sometimes there appears to be a significant percentage difference between chemo and going without, sometimes not. 

    One thing that does seem to be a constant is that regardless of how well you look after yourself, you can not completely mitigate the risks of cancer returning. Yes, you can not do really bad stuff--which you would think should help--but there are many examples of fit, healthy people who have lead exemplary lives getting cancer. Which totally sucks. Studies recently are suggesting that luck--or a lack of it--has as much a part to play as lifestyle or genetics. Which basically means no-one really knows.

    You'll have to go with your head on this one. Others weighing in and pressuring you can make those sorts of decisions really hard to make as well. In my case the increase in survival was about 7% if I had chemo (for the second time) Like you, I initially went 'Nah' then made the mistake of letting my son and partner know that it had been offered and I was going to refuse. I should have kept my mouth shut.

    This really is a shit of a disease. Marg xxx


  • RomlaRomla AdelaideMember Posts: 354
    Hi Celly -have been given a similar prognosis 2-3% risk reduction with chemo - and all 3 oncologists didn't think worth it in my case . I was recommended to have radiotherapy followed by hormone therapy which I've just started. As am post menopausal and er+ am on an aromatase inhibitor Letrozole trade name Femara for 5 years.Am also osteoporotic so Prolia injections 6 monthly to counter bone fractures. Have been told by oncs and read Prolia also helps prevent recurrence. My medical details are on my profile if it's of interest.Re nurturing just found out about Encore a free 8 week course run by YWCA incl hydrotherapy might be of interest have been told it's great
  • RomlaRomla AdelaideMember Posts: 354
    Oops radiotherapy completed just starting hormone therapy 
  • TonyaMTonyaM Member Posts: 2,462
    In my experience (twice on the bc ride) if your oncologist says you MUST have chemo then you need it.If they leave it up to you,then you probably don't need it. They have to offer it because some women will want that 1% help regardless. Just get all the info and stats for your situation and then go with what feels right for you now.
  • melclaritymelclarity Member Posts: 2,422
    @cellyk I agree it's a really good question, like Tonya and @Zoffiel I too am twice on the BC ride. It was the recurrence in 2015 I had 2.5cm IDC Stage 2 Grade 3, no node involvement. my Oncologist said based on Grade 3 he always does Chemo as rule of thumb. I am only ER+ yet you have Her2 negative as well. Its so so hard, I was so against chemo but I did it because of recurrence. 

    It would be great to think that healthy food and exercise will do the trick but if that were the truth none of us would have gotten it in the first place I guess. I do all these things plus nurture me, the biggest key to it all...but for no other reason do I do these things to feel good only, I enjoy a glass of wine when I want and chocolate too LOL. 

    I was on Tamoxifen for 4yrs and had a recurrence, im now on Aromasin after being pulled off Arimidex, will that do the trick?? ummm no idea but I don't think about it anymore. It's the million dollar question really if chemo was necessary for me as I then 14 months post chemo had a single mastectomy/diep flap recon in February, pathology of the breast was perfect bittersweet I guess :/ So it really is super personal you really do need their expert opinions. 

    In hindsight after 6yrs?? of this shit road?? in 2015 I should have done a mastectomy and no treatment, but its done, but if I had my time again that's what I'd do. 

    Oh and I had so many people say to me...YOU HAVE TO DO IT FOR YOUR KIDS!!!! My Response??? If I cannot do it for myself first and foremost how the hell can I do it for anyone else. It has to be about YOU and nobody else...theyre not going through it. So try and filter what people say to you trust your gut and you'll choose the right thing for you..Hugs Melinda xo
  • CellyKCellyK AdelaideMember Posts: 23
    Yeah, that's basically what the onco said.  She also said "I can't guarantee it will be a benefit to you - but I can guarantee you'll have long term toxicity from chemo." ...so it's pretty hard to like the idea.  What a shock, I went in there very naive - thinking chemo - especially early - was basically a cure.  I hadn't heard about all the long term effects until she told me.  Now I'm trying to absorb a complete change of perspective, while trying to make a decision.  Bleh!
  • iserbrowniserbrown Member Posts: 1,643
    Have you discussed other treatment options? 
  • CellyKCellyK AdelaideMember Posts: 23
    @iserbrown Hi, 
    I'll be having hormone therapy - tamoxafin since I'm pre-menopause.  That was given about a 5-7% contribution to my long term survivorship - which I think is worthwhile.  Radiotherapy is not needed - because there are no targets left.  Other than that I have no idea what other options there would be - neither my surgeon or oncologist has mentioned anything else.  If there's something else, let me know. 
  • primekprimek Broken HillMember Posts: 3,182
    Wondering if any immunotherapy trials you might be able to go on which have much less issues but might improve stats.
  • CellyKCellyK AdelaideMember Posts: 23
    @primek I'll certainly ask about it.  I had assumed they would've mentioned all options by now... but we know what assuming does!  
  • primekprimek Broken HillMember Posts: 3,182
    Here are some current trials. I think the immunotherapy trials are only for metastatic disease. But there are others that may be suitable. 

    https://www.anzbctg.org/mobile/clinical-trials


  • socodasocoda LeumeahMember Posts: 1,457
    @CellyK, I like you was offered chemo but told that it would not be of much benefit. I was also offered genome testing where breast tissue is sent to america to rate % chance of recurrence. I turned that down too. I was stage 2, grade 1, 2.7cm tumor with benign satellite. I had mastectomy with immediate silicon implant. Eo+, PR+, Her2-, am on Tamoxifen for however many years. Just finished 1st year, all scans clear. Only you can decide what is right for you. If in doubt write up a list of pros and cons to see it in black and white, go with your gut instinct. Wishing you all the best with your decision. Xx Cath
  • iserbrowniserbrown Member Posts: 1,643
    @CellyK ; - I can see others have come on.  Yes there are always options, but are they suitable to your diagnosis is the question.  Take care
  • NadiNadi Member Posts: 516
    Before I decided, another factor for me was how I might feel if I didn't do chemo and then had a recurrence.  I know I would have found it hard to accept that there was something I could have done but chose not to.  But then my onc pushed chemo as I was HER2 positive. Good luck with your decision.
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