Forum Discussion

BloodyNuisance's avatar
BloodyNuisance
Member
5 years ago

How do you decide on treatment?

Hi,  this is soo not a me thing to do - I'm basically a very private person and struggle to ask for help, but I was filling in some sleepless hours reading some posts and decided I should bite the bullet... I was diagnosed late May initially ER/PR+ HER2- grade 2 from biopsy,  so suggested treatment was BCS followed by radiation for 6 weeks, then probably tamoxifen for 5-10 yrs. My immediate thought (not really listening)  was that it wasn't bad as I could just have the lump + a bit out and it would be gone - haha!! 
So after telling each of my family separately (ie repeating it 5 times) I suddenly came to the realisation that I would never cope with (over 1hr each way) trips to the hospital 5 days a week for 6 weeks, so a call to my surgeon to change my mind - and a mastectomy was had. New pathology results suddenly meant new treatment regime - my Her2 came back questionable followed by Her2+ after further tests.  Thankfully nodes -. So now I'm looking at 12 weeks of Taxol, 12 months of herceptin,  3 years of zoledronic acid then letrozole followed by tamoxifen. So everything has basically gone to shit and I'm in the midst of trying to decide what to do, hence another sleepless night 😕
I had my 2nd appointment with my oncologist today and asked a heap of questions and I'm still unsure....  I had almost decided to not do chemo or herceptin, and possibly just do tamoxifen....  I'm a bit all over the show... I think I just find it really hard to accept that I should do something to my body that is most likely going to make me feel like shit!!  I haven't been sick for absolutely ages - why would I choose to be???  Now I think maybe I should just do what they suggest, but I'm quite concerned about the effects of the herceptin on the heart ... And how is all this treatment going to affect life in general... So many things to consider.  So I have to somehow decide this stuff before my next appointment in a week and he wants to start the chemo next Thursday if I agree.... 
Do most people just "listen to the experts", or pick and choose what to do - and how the hell do you make those decisions?!!?!?!
Sorry - such a long rant....  Xx
chemotherapy
her2
herceptin
  • PV123's avatar
    PV123
    Member
    5 years ago
    Hi @BloodyNuisance
    My diagnosis was similar to yours.  I first had a lumpectomy, started taxol and herceptin.  Once chemo was finished I had bilateral mastectomies.  I still have a few months of herceptin remaining.  I was very scared of chemotherapy initially, however didn’t have any major issues with taxol.  I had mouth sores, skin issues and some diarrhoea.  I did do the ice treatment to prevent potential neuropathy. I had  slightly lowered heart function with herceptin at 6 months but in my last echo this appeared to have resolved itself.  

    The oncology nurses are very good and helpful.  The oncologist mentioned that herceptin has improved outcomes for her2+ breast cancer tremendously.  I always felt that if I didn’t follow the advice of the oncologist I might have regrets later on, I also wanted to do everything I could to beat this. The initial period is extremely stressful as you have to make so many decisions but it does get better with time.  Good luck with your treatment.
  • BloodyNuisance's avatar
    BloodyNuisance
    Member
    5 years ago
    Thank you so much for your replies - @jennyss - I guess we have to put our faith in some
  • MicheleR's avatar
    MicheleR
    Member
    5 years ago
    I start chemo next week and I have to say ive been terrified. Surgery was something I could relate to as ive had caesareans and appendix. It was the easy part or so i thought. Fear of the unknown thrown in with a blood and needle phobia hasn't helped but you know all the health professionals I have dealt with are fabulous and I don't feel they recommend things that aren't needed.  Trust is needed and as you say accepting help is hard. You can read things on the internet but its probably not all factual. You can't become an expert in the time frame needed. My surgeon and oncologist do their job all the time, they are up to date with new procedures, different treatments and they studied for a long time to get qualified. Their reputation is at stake. If you don't feel comfortable with your health people then maybe get a second opinion to allay your fears or at least find something you can bear with. 

    I agree it is very hard and I wish you all the best whatever you decide. 
  • Blossom1961's avatar
    Blossom1961
    Member
    5 years ago
    I did not want to put those nasty chemicals in my body. Nuh uh. No way. However, I knew the Onco and BS knew better than me so I closed my eyes and jumped in. It wasn’t fun. I am now nearly two years with NED, my flat side chest has a lovely tattoo and my hair is as curly as a poodles. I have met some awesome people on the way. Would I do it again? Absolutely, If I had to. Your heart gets checked regularly whilst on Herceptin. They stop it if required. Side effects can last for awhile after treatment, I won’t lie to you. However, it is all doable. At least we have a choice nowadays. Best wishes. Sending big hugs as you navigate this next step.
  • ddon's avatar
    ddon
    Member
    5 years ago
    I hated the thought of chemo - I never get sick, I had taken good care of my body and I felt perfectly well, and the thought of letting myself be infused with nasty chemicals was horrendous. Many sleepless nights. But I had no choice really - take the treatment or give up on a future - so I did what I was told. I don’t know if any of it will work but I am out the other side of 9 months of treatment and I feel perfectly well again. I am not sorry I went through with it even though it surely wasn’t fun. None of this is easy and your body is in your hands as far as decision making goes. As Zoffiel said - the time goes very quickly.  Best wishes xx
  • iserbrown's avatar
    iserbrown
    Member
    5 years ago
    https://www.bcna.org.au/understanding-breast-cancer/treatment/chemotherapy/


    https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

    Hi! Welcome to the forum.  The links above give you an understanding of treatment.  You mentioned zoledronic acid injections.  BCNA has a fact sheet that will help you understand why 

    The treatment regime recommended is tailored to you based on pathology results.  

    Best wishes with research and treatment 

    The next phase if you are considering it is reconstruction so here's another link

    https://www.reclaimyourcurves.org.au/


    Take care and stay safe 
  • Zoffiel's avatar
    Zoffiel
    Member
    5 years ago
    @BloodyNuisance that decision to ditch the boob might have saved your life, but it's thrown up a whole new conundrum. This happens all too frequently.
    Over treatment might be a 'thing' but it's impossible to say how often it happens. You are obviously looking at all your options, unfortunately the one we all for search for, that it's all a misunderstanding and we can go back to our normal lives, rarely materialises.
    Don't get too caught up in the numbers and the potential side effects.  Look at the time frame and how quickly the last six, twelve, eighteen months have passed. 10 years will go by, whether you are taking meds or not. In most of our cases, they are more likely to go by if we swallow the bloody pills and write off a few months for the tough treatment. I hated putting myself through my treatment. Hated it. But much like the decision to try to swim if I fell off a boat (I have BTW) it seemed like my best chance of survival. Hang in there, you will figure this out. Mxx
  • Afraser's avatar
    Afraser
    Member
    5 years ago
    Dear @BloodyNuisance

    Cancer is just that - a bloody nuisance. It interferes with our plans and lives and forces us into decisions that most of us have little training or experience to do adequately or with conviction! But like most bloody nuisances, it has to be dealt with. From my point of view, I’d rather deal with it once if at all possible. I had no
    option about a mastectomy, but I could have refused chemo (I had three months of A/C, then three months of Taxol). And a year of herceptin. I accepted what my oncologist recommended - he was well qualified, good research credentials and knew a lot more about bc than I did. I didn’t have a perfect run, most of us don’t but I was never sick through chemo (worked throughout) and my heart was carefully monitored through herceptin and no side effects. If it all gets too much, you can stop, you know. But, like many, I felt it was worth doing all I could to stop the bloody nuisance returning. Did it work? Don’t know, but eight years in, so far so good. It’s a horribly personal decision, but ‘no regrets’ was the clincher for me. Best wishes whatever you decide. 
  • jennyss's avatar
    jennyss
    Member
    5 years ago
    Dear @BloodyNuisance,
    Lucky me - somehow four years ago, I didn't have any choices:  It was lumpectomy, no nodes, chemo ( docetaxal I think) , radiotherapy and long term anastrazole tablets. I think 'listen to the experts' worked for me. I had a fantastic breast cancer nurse. 
    Best wishes for your advice and choices.