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Lelle's avatar
Lelle
Member
4 years ago

Treatment decisions

Hi everyone!

 I was diagnosed with early stage, grade 3, ER/PR+ breast cancer in early April shortly after my 28th birthday. I had a lumpectomy early May and it came back with clear margins and clear lymph nodes (but not without a good infection and some extra fun in hospital!)

I'm currently in consult with my team on my next stage of treatment. Radiation is a given and I'm yet to see my medical oncologist but chemotherapy seems to be highly recommended for me but ultimately it's a decision I must make myself. 

I'd love to hear other people's decision making processes in a situation like this and the reasons why you may or may not have gone down that route? 

Stay strong x


10 Replies

  • Hi, sorry you are going through all this and you are young. I had grade 3 and hormone positive bc and no lymph. I had surgery, chemo and radium. I know chemo is tough but grade 3 ca is the highest grade and there are greater risks of return. In saying that there was no lymph. My oncologist recommendation my treatment plan ie chemo and radium and now tamoxifen to give me the best chance possible that this horrible disease won't come back. My oncologist is a professor and very learned. I was really happy to follow her advice and undertake my entire treatment plan. She had studied for years about all of this and she knew alot more than me.

    I did question all of it and the benefit of each treatment. They all do something different and each treatment targets a different layer in the body. My tamoxifen is for 5 yrs and is actually 60% of my treatment plan. Maybe ask your oncologist to break down the treatment plan into percentages to see the benefit of each. Good luck with your decision.
  • @Lelle
    Chemo is a daunting prospect for everyone. But it’s getting better all the time - more focussed, better attention to side effects. I hoped I might dodge it (mastectomy, hormone positive, one lymph node) but my oncologist (with what my daughter and her doctor friend described as excellent research credentials!) was clear in his recommendation. 
    One day, like me, it will all seem a long time ago. At the time, it’s an all consuming prospect. But I did dodge nausea and fatigue, I felt (and looked!) remarkably normal and six months went surprisingly quickly. Your oncologist will recommend  what he/she considers to be your best course to stay cancer free. You can of course seek other opinions. And ultimately it’s your choice. But if, like me, you knew very little about cancer before all this started, a knowledgeable guide is a good thing to have. Best wishes. 
  • Hi @Lelle. You find yourself with a really difficult decision. I think many of us, myself included, have been where you are. I saw my radiation oncologist for the first time right after my medical oncologist appointment, and it was so obvious I was really flustered that she asked me what was wrong. I was about to start crying and told her I was having a hard time deciding about chemo (in addition to other issues). My ca was hormone positive too, HER2 negative, stage 1, grades 1 and 2 because I had multiple lesions. I also had them in both breasts. I was 39 at the time. I had one lymph node with a micro met. I was supposed to have clear margins cos I had a double mastectomy, but my rad onco and new surgeon confirmed my margins were not clear. That’s why I couldn’t dodge radiation on both sides, even though i shouldn’t have needed it. I was told that the micro met didn’t pose any danger at all though. That wasn’t the reason my onc said I should have chemo. It was mostly because of my age. I said I couldn’t do the oncotype dx test cos it was too expensive so he had to decide based on what he already knew. So his recommendation was that I should do it because I was so young, but he was also comfortable with me not doing it. He wouldn’t twist my arm to do it. He said surgery was the Batman that got rid of all the ca. Chemo was Robin, who only helped. Batman could do the job alone, but he wouldn’t mind having Robin to help. He also said chemo was the cherry on the cake. Not necessary but made it look prettier. He also said that not having chemo wouldn’t be the reason in the case of (God forbid!!!) a recurrence, and that having chemo also wouldn’t prevent it. Not having chemo also wouldn’t mean having a recurrence. 
    Finally, I asked his registrar at the time, a young woman, what she would do in my case. She was telling me all the reasons why I should have it, and even said to me chemo wasn’t poison, after I told her I needed a good reason to be injected by poisons. I said to her ‘what would you do, in my case? Imagine everything is the same’. She said she was risk averse and wouldn’t have it. But that was just her. I said to her I’m also risk averse, and haven’t been given a good enough reason to go through that ordeal, with potentially life long side effects that would require more medication.  I asked if having chemo was recommended for me cos I had multifocal and simultaneous bilateral bc, which I’d read on google meant more prone to recurrence. She said no, don’t read google, and chemo isn’t recommended cos of that. So that was my decision. My surgeon also wanted me to have chemo due to my age, but I told her my age meant I want my body in a top functioning state, and chemo would hinder that. I was aware of her advice and it was my decision not to do it. My oncologist is also fantastic, and he’s key researcher at the Kinghorn Cancer Center and Garvan Institute in Sydney. So him telling me chemo didn’t guarantee being ca free in the future, and only gave me a 1% chance of higher survival rate, was the decider for me. Potential side effects, in my opinion, posed more threat. He also said that there was no question about me taking hormone suppressers for 5-10 years, which also had a similar function to chemo, and even better. 
    Good luck in your decision. I know it’s hard. Just make sure you’re comfortable with your decision, that’s all 🍀🍀🍀. 
  • @Afraser and @Cath62 Thanks so much for your replies!

    I think for me I've been pretty confident so far about taking the recommendations and advice from my team (they're all wonderful), anything to give myself a better quality of life in the future and stop this coming back again. And I know everyone reacts differently to their treatment, so here's hoping it doesn't hit me too hard like my surgery did! I'm very positive about doing everything I can now and kicking this whilst I'm young and otherwise healthy
  • @FLClover Thanks for your story. It's interesting to see your reasoning and I will definitely be having a good chat with my medical oncologist about the reasoning behind the chemo recommendation and also the hormone therapy which I will inevitably be having.
    I think the grade 3 is a huge factor in the advice for me to have it and that's something that has started swaying me. At my first scans and biopsy, it was only a small lump. By the time I had my surgery 4 weeks later, it had pretty much quadrupled in size (it was actually 2 that were kind of fused together so classed as one) and though not found to be anywhere else, I had a small margin on one side so still chance some were missed. 
    I definitely won't do anything I'm not comfortable with, it's a big decision and I want to make sure I'm doing what's right for me to help me stay as healthy as possible for as long as possible. 
  • @Lelle the fact it was grade 3 is def smth to consider. The fact it was growing so quickly is very important. Just make sure you know exactly what the chemo will do in relation to the grade. As I said, I thought me having chemo was recommended mostly due to it being multifocal and bilateral. That scared me the most. But after it was confirmed that it would def not help in that regard, I didn’t see the point. And I did think long and hard about it for a couple weeks. Ask your oncologist to tell you how chemo will prevent future lesions growing at the same rate, and also how it will help with mopping up any current stray rogue cells. It’s about weighing up pros and cons as we all know. If the answer is that chemo will be more beneficial than not, def go for it. 
    M Xx
  • Hi @Lelle,

    I was recommended for chemo. My oncologist started reeling off stats etc. But i said look I dont want to know. It will just make it worse. 

    Having it recommended i just took the approach that you want to do everything you can for yourself for a long life. I was 48 and you are even younger. 

    I did 5.5 months of chemo and its a small cost to me for a longer life. Ive thrown everything at it. If it comes back at least ill know that its not because i wavered. I also know if i have to i know i could manage it again. Cross fingers not required. 

    Radiotherapy isnt necessarily easier. Its just shorter and different. Radiotherapy treats your chest wall. Chemo is systematic and chases those cells that might have got out around your body. 

    I hope this helps. 
    Michele
  • Hi @Lelle I think you are doing the right thing by gathering as much information as possible to help you make your decision. My breast care nurse said to me right from the start, ‘You want to throw everything at this.’ You sound like you have a great team who will be able to help you with the decision.

    Age, stage and grade all have an impact on the plan. I did chemo and came through it pretty well; tiredness was the challenge. The doctors and nurses will do everything they can to keep you as well as possible. Chemo is doable.

    I was someone they put in the ‘grey’ area for radiation - the radiation oncologist was ‘comfortable if I did it and comfortable if I didn’t.’ Decision was completely mine which really messed with me. I gathered the facts, spoke to doctors and breast care nurses and decided against it. I had chemo, BMX with clear margins and nodes. I wanted to make sure I would not look back or lose sleep over my decision and, in the end, I am happy with my decision. I definitely followed the recommendations of my medical oncologist and he was happy for me not to do rads. Take care x
  • Definitely get all the information you can. When I met with the medical oncologist, once she realised she didn't need to simplify info for me, she gave me so much detail. Specific stats of what treatment would add what percentage to recurrence and survival rates etc.

    I had stage 2 grade 2 ER/PR+ HER- at 45. I opted for a mastectomy due to anxiety and 2 sentinel nodes were biopsied. Nodes were clear and tumor was the size it showed on MRI 5 weeks before surgery (35mm at largest point). My surgery choice meant no radio and my surgeon had hoped no chemo. However I wasn't expecting to be told by the med onc that 'I should consider chemo as it could help a little bit'. I was proper 'grey zone' and an ideal candidate for genomic testing. That came back as a low risk of recurrence and chemo was not recommended. 

    What I learnt through this process is what is probably most relevant to you. Chemo only 'sees' rapidly multiplying cells and attacks them. So hair, nails, immune - and cancer. But not all cancer. In my case, genomic testing showed it was a 'slow grower' therefore, chemo would be unlikely to find any stray cancer cells as they wouldn't be doing anything fast enough to raise chemo's attention. We have no idea how 'old' my cancer was as I had no lump and never had a mamogram before (this one was to check what turned out to be a cyst), but given it was 3.5mm of IDC spreading out from 10mm of DCIS, I'd say it had been there a while.

    In your case, it sounds like yours is fast growing - so their recommendations will all be based on this. Plus you have the multipliers of young age and grade 3 too. So I'd start to mentally prepare that they will want to throw the kitchen sink at it! All the best, I found all of the decisions needed so stressful and overwhelming!