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Radiation decision

micmocmicmoc Member Posts: 3
Hello everyone,

I was diagnosed 5 months ago with stage 3 triple positive (er+, pr+, and Her2+). I was told I needed the full package deal - surgery, 6 months chemo, radiation, Herceptin for 1 year, then hormone therapy for 5 years. Two weeks after diagnosis I had a bilateral mastectomy and lymph node clearance. Both breasts were bad - one very bad and the other not so much but it still had to come off. When my doctor told me I needed the bilateral mastectomy, I was immediately happy and chose to go flat, a decision I do not regret. I love it. I had no shock, worry, fear or any other emotion about having cancer. I don't know why, but I feel quite dissociated about having BC and still feel fine about it all. 

I completed my chemo a couple of weeks ago and am now due to start radiation. I became stubborn and told my team I didn't want it. My BC profile put me in a grey area where it was not essential (I had no tumour to shrink) but would greatly decrease my risk of recurrence. I read much evidenced based research on the matter but most studies were inconclusive as to whether it was totally necessary for my type if BC. But I knew it would reduce my percentage of recurrence a great deal. Following a few consults with my radiation oncologist, I was still against having it until the night before I had to tell my doctor of my decision. I chose to go ahead with it for one main reason - if I did not have radiation, I would always wonder if I should have. Would I be leaving myself open to a greater chance of recurrence because I was just being stubborn about side effects or the fact that my profile was in the grey area. 

I have a couple of questions for everyone here -

Has anyone here had similar challenges about treatment options?
and has anyone had similar dissociation or little emotional response to having BC?



Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 6,120
    Welcome to BCNA, @micaela ... to the club you never thought you'd be joining!  It is a terrific platform for information & support xx

    Well done on getting thru your treatment so well - I hope you're bouncing back well after the chemo xx ...... Those puppies certainly weren't doing you any favours, so as they say - better out than in!  Terrific that you've not been worried about the double mastectomy & staying flat ..... it is a choice that I would probably make too, if I had to - but my own treatment was lumpectomy, rads & tabs.  

    I was offered 'minimal' treatment as an option after my surgery (which meant no radiation) - but I really preferred having 'standard' treatment, knowing that I'd thrown as much at it as I could  - as I am not sure if I could live with the 'what ifs' if i HAD had a recurrence ..... so in a funny way, the opposite situation to what you were in!  

    But your situation is certainly different as you've had most of the flesh removed with your bilateral mastectomy so I fully understand your initial concerns/decision.   You chewed it over & have decided to go with the rads - and good on you xx  Compared to the surgery & chemo you've already had - chances are, you'll sail thru the rads.  I was amazed at how 'relative easy' it was, compared to what I THOUGHT it would be like.    This bloody disease often mucks with our brain even MORE than our body! grrr

    Re dissociation with the diagnosis ..... that would be a No from me .... having nursed my husband thru his first cancer diagnosis, surgery & chemo - I 'thought' I knew all about it ... but when I got MY diagnosis .... I was in shock & had all the other emotions as well! :(

    Take care, when do you start your rads?  Put your town/city in your profile - we may have other members nearby who can point you to other services in your area .... cheers xx
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,308
    edited December 2021
    Hi there @Michaela When I was first diagnosed with BC in 2006 radiation therapy was recommended. There was no public service where I live and the provider would only give an estimate of costs --  about 10k.

     I didn't have the money, being a single mum, and the only local provider suggested I sell my house if that was the only way I could afford the treatment. I told them to bugger off and I'd take my chances. In was already broke, and I couldn't see how don't homeless would help. At least the house was insured and I had a bit of super which would give my dependent son half a chance. That was a shit position to be in, but was common enough at the time.

    My cancer came back in 2016 but by then there was public radiotherapy here, even if I had to travel 100 km each way for it. I don't regret doing that.

    To be honest, rads is a doddle compared to surgery and chemo. None of this is fun and I ended up with some nasty burns, but they only lasted a fortnight. Which is a pretty small price to pay.

    Throw everything at it if you can. Mxx

  • MazbethMazbeth BrisbaneMember Posts: 191
    Hi @micaela, I can totally relate to the ‘grey area’ as I was also in it. I didn’t even know there was such a thing. I had ILC, did neoadjuvent chemo followed by a BMX (my choice) and I continue to take an AI. Pathology showed clear lymph nodes, clear margins and no LVI and from what I understand, I had a good response to chemo. I knew from diagnosis that I would do whatever was recommended - I did not want to have any regrets. I was prepared to throw everything at it. My breast care nurse was excellent and really reinforced my thinking. 
    I was referred to the radiation oncologist to have what I thought was a conversation about ‘why I wouldn’t be having radiation’ as I had already had the BLX.  My area of ILC was 4.8 cm which is where the grey area came in - over 5cm puts radiation in the equation. In the words of the radiation oncologist ‘I am comfortable with you having radiation and I am comfortable with you not having it.’ He actually could not really say if there was going to be a benefit given the ‘good’ pathology results.  They are the exact words and I actually left his rooms and cried because I felt like I didn’t really get an answer. I felt like I was asked if I wanted sauce on my pie - it was there if I wanted it. ‘
    My oncologist actually contacted the radiation oncologist to try and get some clarity for me and in the end I said no to radiation and all my medical team were okay with the decision.
    My diagnosis really rocked me and I was pretty devastated, but then I just got on with the business. 
    I think everyone is very different and I can see that in the 2 years since my diagnosis, protocols have changed and improved.  Take care 🌸
  • Julez1958Julez1958 SydneyMember Posts: 392
    Hi @micaela
    I had a mastectomy following diagnosis of a 5.5cm lobular cancer, hormone positive.
    I was not recommended chemo as there was no cancer in my sentinel lymph node, but the guidelines suggested I have radiotherapy due to the size of the tumour.
    My breast cancer surgeon referred me to a radiation oncologist and she recommended radiotherapy , she advised it would help prevent recurrence so that was good enough for me.
    I had 28 sessions and it was not too bad at all.Have a look under the “ radiotherapy” thread in this forum , there  are lots of useful tips , I had mine at the Genesis Centre in Darlinghurst , the out of pockets  were approx $2,000 , the service was excellent but many others have said they had a perfectly good experience in the public system.
    I am also on the hormone therapy ( Letrazole) for 5 years.
    I had a big emotional response to my diagnosis and even had a couple of sessions with a psychologist ( first time ever).
    As time goes on I’m much more together but the grief is always there - I liken it to grief at the loss of my “former bulletproof self.”
    Take care.
    🌺
  • AfraserAfraser MelbourneMember Posts: 3,884
    Hi @micaela
    I am quite certain I have never experienced grief over cancer. Initial shock yes, as there was no cancer in my family but it seemed that if other people can get it, then why not me? I think I have been in tears (very briefly) about three times and once was when I accidentally singed my wig! People react in different ways. I didn’t particularly like losing one breast - who does? - but I certainly felt no need to mourn the loss or keep a photograph, although I can understand that others may feel very differently. I did see a counsellor for a short time - my issue wasn’t about cancer but whether some persistent side effects of treatment meant I should be changing how I lived. She was great - no I didn’t have to change anything, but I might want to consider my hectic schedule and think about how I spent my time. Cancer pushed me to consider my own mortality - something I had cheerfully ignored for nearly 70 years!  Nothing dramatic changed, but gradually I became much clearer, even happier than before. It was about a year after diagnosis that I took on new work challenges (but a four day week), planned more travel and made time for more recreational activity. In a sense, batty to wait for cancer to prompt some deep thinking, but better late than never. No one in their right mind wants cancer, but dealing with it can be a positive thing. Best wishes.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,120
    Gosh, you've had some trials even before the BC diagnosis xx

    Good on you @micaela - I live in a small regional town & can never envisage going back to a major town/city ...... when you look at whereabouts you want to 'move to' .....just do a google on any of the nearby hospitals first!   Our 'local' hospital is 1/2hr away - and when we moved here 21 years ago, was told 'when in pain, take a train'!  So when hubby & I were diagnosed with different cancers, we went to Sydney for our surgery.  Our other 'local' hospitals are still 1.5-2hrs away for followup treatment (rads, MRIs etc.)

    Having BC definitely shortens your bullshit metre ....... don't sweat the 'small stuff' .... use it on the big stuff.  

    Yep, we've just got to 'get on with it' as we don't really have a choice, do we!  

    Onwards & upwards .... I hope your forward journey is as easy as it can be ..... let us know the 'area' that you are interested in moving to, as we may already have members there!!  ;)

    take care xx. All the best xx
  • Keeping_positive1Keeping_positive1 Member Posts: 391
    I wasn't really in shock about the cancer diagnosis either, but my main concern was how was I going to keep my roof over my head as I am also on my own.  Also the mechanics of getting to appointments and chemo on my own was what really overwhelmed me.  I had friends step forward to drive me to chemo and back, so that was a blessing.  I took leave from work, as I was not going to try to work shift hours and get to appointments, and the nature of my work was that my shifts needed to be covered ahead of time, so I took leave.  

    I embraced many changes in my life which included taking out time for "me" and taking up old hobbies and going on leave from work, and never ended up returning.  When we hear the old saying "why me", I actually said "why not me".  Of course nobody wants cancer, but I have family history and my grandmother passed from breast cancer the year I was born.  

    micaela, I was also 61 when diagnosed and ER positive and HER2 positive and in lymph nodes, so I also got the "works", surgery, chemo, herceptin, radiation therapy and hormone therapy (still on it, but having a break from it), and now 5 years on from diagnosis.  My cancer diagnosis forced me to slow down!

    Take care, you sound like you are doing well, and accepting the diagnosis, and I truly believe that is over half of the battle.  Perhaps us who get diagnosed later in life (over 60 years), can accept it a bit better.....idk.. thoughts anyone ?????? 
  • micmocmicmoc Member Posts: 3
    It sounds like we have some things in common Keeping_positive1. I took time off work as well and returned to just a little a couple of months ago. I've learnt to take time out for me as well. So much so that I too never went back to part of my work and only resumed a few hours a week. I don't have nay money and can barely pay my rent, but it doesn't matter. Quality of life and loving according to my values are more important. It feels like my BC has given me permission to live according to my values, not others'. 

    Keeping_positive1, I'm with you on slowing down. I thought I could return to one of my jobs, just 4 hours a week, 3 weeks after my surgeries. I went for 1 day which floored me and I never went back. Having something as severe as cancer certainly makes one face a reality check, where the mind has been going full steam in one direction, sometimes on autopilot, and the body says 'No you don't. Enough of that! Time for a life reset'. It really turns your life around and make you reassess where you are headed. 
  • Julez1958Julez1958 SydneyMember Posts: 392
    Yes @micaela a common theme among the ladies here is that a BC diagnosis often causes a “re prioritisation “ which is not surprising because it forces us to think about our own mortality.
    I have learnt to say “no “ more and to think seriously about what is important to me.
    I have played the “ cancer card” on occasions as it is a reality for me that I just don’t have the physical and mental energy I had pre diagnosis.
    I am lucky I am semi retired at 63 so that has helped me slow down and smell the roses.

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