Can't decide on treatment.

Roxette69Roxette69 Member Posts: 9
Hi. I've only posted a couple of times and am finding it hard to post this.  I'm a 48 yo mum of three.  I was diagnosed in October and have had three surgeries, the last one on 5 December which was a mastectomy. I have just seen my oncologist on Friday and she has given me my treatment options. I was diagnosed with a 15mm stage 2 ER+, PR+ and HER2- with no lymph invasion. I have been offered chemo but am unsure if I want to given the stats on mortality rates. It apparently only gives me a 1% benefit. I don't know if anyone else has gone by these statistics.  I have also been told that a good idea would be, if I don't do chemo, to be put into early menopause so I can take Aromatase inhibitor instead of tamoxifen. I would just like some input, advice or suggestions as I am finding it very hard to decide. I hate decisions and there have been so many over the last few months. 

Comments

  • DeanneDeanne Sunshine Coast QldMember Posts: 1,999
    Hello @Roxette69,
    Ah for a crystal ball! It is tough when any choices have to be made and they are not clear cut. My decision re chemo was clear cut (stats for my pathology were 17% better off to have it). Your situation is very different and I honestly don’t know what I would have done in that situation. Sorry no help I know! 

    I was 47 when diagnosed and did start off on Tamoxifen after chemo etc. But, when my periods returned a year or so after chemo put me into (obviously temporary) menopause, it was recommended to do something more permanent so I could switch to an Aromatase inhibitor.

    I chose to remove my ovaries and tubes and then went onto Femara (Letrozole). Surgery was laparoscopic and recovery was quick. As I had already been through menopause of sorts during chemo I found that my side effects were not too dramatic after the ovaries were removed. Of course there are the usual side effects of Femara (joint pain mostly and vaginal dryness). I am now almost 5 years from diagnosis and have found ways to live well with any side effects. This network is great for support and practical advice.

    I wish you all the best with your decision making. This is a decision that only you can ultimately make but I am sure that others who have faced the ‘to chemo or not’ question will be able to explain their thought process in helpful ways. Take care. xxx
  • Roxette69Roxette69 Member Posts: 9
    Thank you so much for your reply Deanne.  It really helps to get other perspectives. I was also 47 when diagnosed in October and haven't had my period since then which is quite bizarre. So I'm not sure what's happening there???  I may already have started menopause, who knows?  Thanks again.
  • AfraserAfraser MelbourneMember Posts: 1,462
    Hi Roxette
    While it's good to have surgery behind you, it's hard to start a new year with this kind of decision. No lymph node involvement is good. Most people find the prospect of chemo very scary, especially when the overall value may seem very low. Menopause and AI however are factors that, like chemo, are hard to evaluate as everyone's experience differs in some way.

    Some questions may help your thinking:

    * negative side effects of AI can be bone thinning leading to osteoporosis. Have you had a bone density test? If your bone density is good, this may not be a major issue.
    * another one is vaginal dryness or atrophy. May range from nuisance to a distinct change in your sex life. 
    * joint pain and menopause-like symptoms are common (although I have been on Femara five years and never had either). I was post menopausal when diagnosed, and was virtually symptom free during menopause anyway, so can't comment much on that.
    * if your oncologist is considering chemo, what specific therapy? Ask for some written information on the most likely regimen. However you won't get all of the side effects noted, and may get few. Nausea and fatigue are common, but some people get neither. You may also feel awful.
    * how long a course of chemo? 
    * while no-one can make guarantees about the duration of side effects, when a course of chemo is done, it's done. Tamoxifen is considered 5 years good, ten years better and some recent research is beginning to go that way with Femara. 

    Best of luck with whatever decision you make, but you are ultimately the best judge of what's right for you, at this time. 
  • MollygirlMollygirl Brisbane Member Posts: 213
    Gosh @Roxette69, I certainly feel for you. I was told you're having chemo so I can't imagine having to make that decision myself. I'm 47 and yes the chemo put me into menopause, and those symptoms are bloody awful ( night sweats kill me ) but you know, I guess I wouldn't want to have a recurrence and wish I'd done the chemo ( shite can't believe we'd wish for chemo but you know what I mean).  I also still consider myself young at 47 and wanted the best chance at a lot more years yet. 
    Sorry I can't be more helpful it's such a roller coaster the treatment ride. Hope you're recovering from surgery okay, it's a lot to deal with. Have you a breast care nurse you can chat to about all this too?  Massive hugs xx
  • AineGAineG Member Posts: 53
    Hi @Roxette69, my situation was probably quite similar to yours, I was 44 when diagnosed, mum of three (4-7-9 at the time) and I also had Stage2, Grade2 ER+ PR+, 40mm on the left and various dcis in the right.  I had double mastectomy & node sweep on the left (as there was one node involved)  I did radio because of the node involvement, but was also told chemo would have limited benefit because of the Ki67 result which in my case was 5%.  At the time I remember feeling that not having chemo was like not getting treatment, 'cos that's what we associate with cancer, but research has improved and treatments have changed.  it's good to understand that this indicator has only been around for 5 or 6 years, so before that chemo was pretty much offered to everyone.
    I did go on the zolodex for ovarian suppression and Aromasin as my daily hormone tablet so far so good.  Yes, I get hot flushes, but I figure I would have had them sooner or later anyway, and in my case they haven't been too bad.

    It's just over 18months now since my initial diagnosis and I've been on the hormone treatment for about 14-25 months. Honestly I haven't looked back.

    Ultimately, you need to go with a treatment you feel comfortable with. Trust your team, maybe your surgeon or GP or breast care nurse can help talk it through.  

    Best of luck with your decision.  
    Aine
     
  • Roxette69Roxette69 Member Posts: 9
    Thank you so much for your replies ladies. I'm still undecided. I'll have a chat with my bc nurse and see if I can come to a decision. I see my oncologist again on Friday so will have to decide by then. Thanks again. 
  • MollygirlMollygirl Brisbane Member Posts: 213
    All the best @Roxette69 let us know how you go - we're here to support you whatever you decide. Xxoo
  • Roxette69Roxette69 Member Posts: 9
    Hi ladies. I haven't been on for a while as it's all go with school holidays, one week to go!  I decided to not have chemo. My treatment will be tamoxifen for a couple of years then switch to aromasin inhibitor after that. I haven't started yet as I have to have an ultrasound on my leg to check for DVT. I had an aching leg but it has gone now, I think it is because I am so used to being active and have been so inactive lately. I can't wait to get back to the gym once the kids are back to school. I have an MRI on Monday on my other breast just to check that. Well that's about it for now. Hope you are all enjoying your Saturday. It's so hot outside, Im in enjoying the aircon!  
  • Roxette69Roxette69 Member Posts: 9
    Oops, I meant aromatase inhibitor!!!
  • AfraserAfraser MelbourneMember Posts: 1,462
    Good you have a plan! No air conditioning needed here in Melbourne, cool, pouring with rain and the thunder just started! 
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