Hello!
bit of background - I’m 37, young family, diagnosed with stage 3 breast cancer in January, ER and HER positive
had a mastectomy and axillary clearance and have had chemo and radiotherapy. Now on tamoxifen and Phesgo.
genetic screen negative but still been told I’m high risk.
I don’t know what to do about risk reducing surgery - I’ve been told it’s an option but then I obviously won’t have any form of screening. Does anyone pay for private MRI screening? Any personal experiences of similar circumstances?
i also wonder whether oophorectomy/hysterectomy would be better than medical induced menopause but I’m not sure if this is far too aggressive an approach - again any personal experiences welcome…I am worried about hitting the menopause so young as I cannot have any HRT - hot flushes are already pretty ridiculous!!
I keep losing sleep over the fact I took at johns wort during my chemo - I knew no better but now I’m told it could’ve affected the benefits…no one has a real solid answer on this and I’m kicking myself…the thought that I could’ve scuppered the benefits of a rather awful treatment is driving me batty!!
Lastly - I really feel like I want to turn this yuck part of my life into something good - giving back in some way. I’ve thought of training as a counsellor maybe or getting involved with some charity work…has anyone done something they would recommend and would care to share with me? I still have a few months before I’m due back at work and it seems like the perfect opportunity to change tack or add a new string to my bow
thanks for reading and replying!!
First of all it’s only a few chemo drugs that St. John’s Wort MIGHT effect - “Taking St. John’s wort with irinotecan (Camptosar, Onivyde), docetaxel (Taxotere) or imatinib (Gleevec) might reduce the chemotherapy drug’s effects.” And again, that’s a might. Nothing you can do about it now but you were probably on multiple chemo drugs so if one was effected the other might have been just fine.
Secondly I would definitely do risk reducing surgery IF they found a gene. But they didn’t in your case. Did they thoroughly check? If not it might be worth checking independently just to make sure you are comfortable with surgery. After all, there’s no going back once something is gone so you definitely want to make sure. As far as a oophorectomy/hysterectomy, I am thinking of it, too. But it’s because we have a history of ovarian cancer in my family. I have not tested positive for any genes yet (although I have a few more I am being tested for thanks to my breast cancer diagnosis) but even so, with a family history of ovarian and now a personal history of breast it seems a oophorectomy/hysterectomy should be a no brainer. But my oncologist isn’t so sure and I might have a fight on my hands if I don’t test positive for anything so just be aware. It does not reduce side effects in comparison to taking the pill and an oophorectomy is associated with death at an earlier age and hysterectomy is associated with quite bothersome physical side effects. Every surgery, everything you take out effects your body and thus possibly your immune system in ways we can’t predict. And your immune system is going to be your life long defense. So truly it is a very careful balance we have to tread with any kind of treatment weighing carefully risk versus reward.
And giving back to the community is a fantastic idea. I haven’t gotten that far yet personally but I wish you the best of luck.