I have just had a lumpectomy for an LB IDC, grade 2 which thanking my lucky stars was all caught first time around. However, I now have to take Letrozole.
I am way past menopause as I had ovarian cancer and complete hysterectomy aged 34 - I’m now 65 - but I had been on HRT since although I didn’t do it very much, just enough to stop me going senile!! Of course that has now stopped.
I am extremely sensitive to side effects of drugs. I have taken statins in the past for skyhigh familial cholesterol but after 2 years they crippled me with fibromyalgia. The statins had to be stopped and no safe alternative was found. I still have fibro though which gets worse year or year symptoms wise. Currently, my particular sufferences are chronic skin pain, peripheral neuropathy, joint pain, chronic fatigue and brain fog, poor temperature control and constant excess sweating, low mood at times. My cholesterol is still through the roof. I am reading that all these are side effects of Letrozole, so I am going to get double portions of everything which I just can’t imagine how I will cope.
I need to speak to someone with expert knowledge about the effects of Letrozole contributing and worsening all my existing symptoms vs. the chance of cancer coming back or a new one developing if I were not to take the Letrozole. I don’t have any BRAC gene as I was tested a long while ago.
Can anyone point me in the right direction please - I don’t mind paying privately.
Thank you
Thank you
I’m the same, trying to get proper personal information about Tamoxifen. I should have started it 3 months ago, but some of the long term side effects frighten me. I want to know how likely it is to get secondary cancer, which really scares me. I don’t think we’re given enough personal information about the risk of recurrence.
Hi Balchik - I have found this really fab doctor on YT - Dr Amy - she is a doctor, but is also a cancer survivor and she goes into great detail about all the side effects of all the drugs and loads of other stuff about nutrition, exercise - all sorts. Heres her link: https://www.youtube.com/@dramycancerrecovery
Also if you try the Predict Cancer tool (Predict Breast) it tells you your individual chances of it recurring which is totally different to what the surgeon told me - she said I had a 2% less chance of getting in the affected breast and a 40% less chance of it happening in the other breast - but this tool tells me that I have a 90% chance of 10 year survival without the drugs and only a 1% better chance with it - 91% - so … at the end of the day its down to us but the doctors have to push this stuff otherwise they won’t be able to tick that particular box - don’t forget they all have guidelines and stuff to meet as well. Let me know if you find anyone. I need someone who will do a hormone blood test to see exactly what my levels of hormone are as I haven’t had any naturally occurring ones for the past 30 years. Best of luck, Amanda x
Thanks amandrose. To be honest, I don’t feel I’ve had much help regarding the Tamoxifen for me personally. I cannot fault the speed I’ve been dealt with for appointments, surgery & radiotherapy, but I’ve had no contact with anyone to help me. I just feel like ignoring it all & taking my chances without Tamoxifen & hope I don’t live to regret it.
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