Forum Discussion

inpink's avatar
inpink
Member
11 years ago

Medication decisions

I'm soon coming up to my 3 year anniversary of my breast cancer journey. My juggling act to maintain wellness is still a challenge as I weigh up the actions and reactions of the treatments I choose. As we know hindsight is a knowledgeable tool after the fact. So here is my juggling act: I was diagnosed with 100% hormone receptive breast cancer - bingo says my oncologist, very positive prognosis. I had a lumpectomy with auxiliary clearance followed by radiotherapy. Now all I have to do is take Arimadex for 5 years. Easy! Through fear at the time of diagnosis I thought a lumpectomy seemed like a less frightening and less invasive prospect. Now two and a half years along I still have a painful breast and very tender brittle rib post radiotherapy. Hindsight? Should I have chosen mastectomy and no radiotherapy and be free of pain and the long term risks of radiation? Probably. Maybe I could have had a double mastectomy just to be sure and therefore spare the good arm the destruction of sentinel biopsy with a later option of double breast reconstruction or indeed be happy with no breasts. I spoke with a plastic surgeon and he says he'd rather see this option offered more often over lumpectomy/radiotherapy. My breast surgeon says he cannot remove the radiated breast now, as I suffered a severe reaction to radiotherapy and the integrity of the skin could not be guaranteed. He has suggested a reduction of the good breast to match my continual shrinking other breast but I'm not so sure... After two and a half years on Arimadex I now have been fast-tracked into osteoporosis despite trying to meet exercise expectations. The next solution? - easy just take 6 monthly injections of Prolia to build stronger bones. Sounds too good to be true! Ah side affects? Well yes possible skin infections, bladder infections, heart inflammation, jaw necrosis, for gods sake this sounds scary. I already have issues with breast lymphoedema and skin inflammation. My oncologist says she really wants to keep me on Arimadex given I had one lymph node involved as This drug has a slight statistical advantage over Tamoxifen, yet Tamixofen is easier on bones. So am I now on the verge of possibly another hindsight regret? I hope not. Should I stay on Arimadex (the best option to prevent recurrence) or swap to Tamixofen (a tried and well know drug) and therefore avoid yet another brutal drug eroding my health. At the time of my specialist consultations their advice sounds reassuring and easy then when I get home, doubt creeps in. I am not so confident I will be one of the lucky ones and not experience awful side affects of this calcium drug. I want to get my hindsight right this time. So here I am practicing juggling and dropping balls in the hope that It becomes my skilful art.
lumpectomy
mastectomy
radiotherapy
Reconstruction
  • VivW's avatar
    VivW
    Member
    11 years ago

    Started on Arimidex last November, 5 months of this drug was horrid, my Oncologist then swapped me over to Femara, same drug different maker, slightly different side effects.  This is better for my body, I am yet to have my 12 month bone scan to see what it is dong to my body.

    As far as your breasts go, I too had major shrinkage with radiation.  Decided to have other breast reduced to match. Had 30% removed, this also reduces risk in this breast as well.  If I can offer any assistance drop me a message.

    Viv

  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago
    I am kind of in the same position as you.My cancer was hormone receptive,but I chose a mastectomy and chemo,but didn't need radiation.I was given a choice,and when I said mastectomy,my surgeon said,"I think that's a good choice".After chemo,my oncologist put me on Tamoxifen,as she believes that 2 years on Tamoxifen then switch to an Aromatase is kinder on the bones,and the difference in preventing a recurrence is so,so tiny.However,after I started on Tamoxifen,she sent me for a bone density test,just to get an idea of how things were,and thank goodness she did.I have advanced osteoporosis,so I went to see a specialist at RPA in Sydney.He prescribed Denosumab(prolia)injections ,every 6 months.To say I was very scared is an understatement.I read all the side effects,and pretty much convinced myself that I would get all of them!!!!However,I went to my dentist and had a check,before I started.He explained to me that necrosis of the jaw is VERY rare,and my dentist is a specialist in this area.I have now had my first injection.My doctor also told me that side effects are not common,and if I had some they would most likely settle down.I am pleased to report that I have had NOT ONE side effect.I had my injection about 3 months ago now.Because of the osteoporosis I will always be on Tamoxifen now.I feel happy with this,and so long as I make sure I have my 6 monthly checkups,and keep an eye out for any unusual things that may crop up ,I feel that this is a good ,safe path of treatment.Another lady on the blog has denosumab also.She had hot flushes to start with,but she said they have settled down now.All the best with your decision.Stay in touch.Cheers Robyn
  • Robyn_W's avatar
    Robyn_W
    Member
    11 years ago
    I am kind of in the same position as you.My cancer was hormone receptive,but I chose a mastectomy and chemo,but didn't need radiation.I was given a choice,and when I said mastectomy,my surgeon said,"I think that's a good choice".After chemo,my oncologist put me on Tamoxifen,as she believes that 2 years on Tamoxifen then switch to an Aromatase is kinder on the bones,and the difference in preventing a recurrence is so,so tiny.However,after I started on Tamoxifen,she sent me for a bone density test,just to get an idea of how things were,and thank goodness she did.I have advanced osteoporosis,so I went to see a specialist at RPA in Sydney.He prescribed Denosumab(prolia)injections ,every 6 months.To say I was very scared is an understatement.I read all the side effects,and pretty much convinced myself that I would get all of them!!!!However,I went to my dentist and had a check,before I started.He explained to me that necrosis of the jaw is VERY rare,and my dentist is a specialist in this area.I have now had my first injection.My doctor also told me that side effects are not common,and if I had some they would most likely settle down.I am pleased to report that I have had NOT ONE side effect.I had my injection about 3 months ago now.Because of the osteoporosis I will always be on Tamoxifen now.I feel happy with this,and so long as I make sure I have my 6 monthly checkups,and keep an eye out for any unusual things that may crop up ,I feel that this is a good ,safe path of treatment.Another lady on the blog has denosumab also.She had hot flushes to start with,but she said they have settled down now.All the best with your decision.Stay in touch.Cheers Robyn
  • Janet_Plummer's avatar
    Janet_Plummer
    Member
    11 years ago

    Gosh it's hard isn't it! So many factors to consider. From the information that you've mentioned I would be inclined to switch to tamoxifen if I was you. I have been on it myself for about 20 months without any problems at all.  Of course tamoxifen has it's risks too - blood clots, uterine cancer, eye problems - and it is slightly less effective than aromotase inhibitors in preventing recurrance in post-menopausal women (as I now am thanks to chemo). But overall it seems to be a bit more gentle on the body than AIs. 

    I am not a medical professional though. Perhaps you could ask your oncologist if they can put a figure on your chances of recurrance with tamoxifen verses arimadex. If it's a matter of a couple of percentage points it might be worth making the switch. There are never any easy answers with these decisions. Good luck. I hope it works out okay for you. Janet.

     

  • Janet_Plummer's avatar
    Janet_Plummer
    Member
    11 years ago

    Gosh it's hard isn't it! So many factors to consider. From the information that you've mentioned I would be inclined to switch to tamoxifen if I was you. I have been on it myself for about 20 months without any problems at all.  Of course tamoxifen has it's risks too - blood clots, uterine cancer, eye problems - and it is slightly less effective than aromotase inhibitors in preventing recurrance in post-menopausal women (as I now am thanks to chemo). But overall it seems to be a bit more gentle on the body than AIs. 

    I am not a medical professional though. Perhaps you could ask your oncologist if they can put a figure on your chances of recurrance with tamoxifen verses arimadex. If it's a matter of a couple of percentage points it might be worth making the switch. There are never any easy answers with these decisions. Good luck. I hope it works out okay for you. Janet.