First time using a forum here so please bare with me. Just a small bit of background first.
I am currently 35yrs of age and still in the throws of side effects, complications, surgeries etc. Especially 4 years post diagnosis.
I was diagnosed with left breast cancer in March 2014. Unfortunately this was just 3 weeks after my mum passed away from secondary cancer. I started immediate chemo. Double mastectomy was delayed by 6 months due to bi-lateral near fatal PE’s. Whilst waiting for surgery, I tested positive for the BRCA 2 gene mutation hence the decision to have the double mastectomy.
I had a lot of discussions with different doctors on whether I should have my ovaries removed at such a young age to prevent ovarian cancer. All of my mums sisters and first cousins had had cancer at this stage, I was first in the family to be diagnosed so young. My oncologist advised against it for a number of reasons, 1. I had not yet had children, 2. The younger you are, the more horrific the menopause symptoms are, particularly as you don’t enter menopause naturally. We tried to compromise around age. He said 40 was best but at a push he would agree to 35.
Post chemo, double mastectomy, radiation therapy I was put on tamoxifen. I received pelvic ultrasounds every 3 months to monitor my ovaries. This scans kept showing a thickening in the lining of my womb and on a few occasions it showed blood and free fluid. I was actually diagnosed with ovarian cancer at one stage to be told three days later it was a wrong diagnosis. Each time I had to travel to another hospital to have further investigations. We came to the realisation that it was most likely the tamoxifen causing the thickening of the womb. However there was still a real concern there that it could turn more sinister. Especially after I had a large benign tumour removed from my pancreas (another risk of BRCA 2).
To cut a very very long story short, at age 34, I had my ovaries removed in November 2017. Just two days post surgery I felt like I had been hit by a train and thrown into a lake of sweat. Every day has been an absolute nightmare and really makes me ponder if I am able to keep going. I met with a new oncologist 2 months after my ovarian-surgery(my other one had since retired). The oncologist took me off tamoxifen and put me on Letrozole stating that the removal of the ovaries meant I didn’t need tamoxifen anymore. I asked her what could I take that would help these debilitating symptoms the menopause was throwing my way. She advised me that all that was safe to take was evening primrose oil. When I asked how long would it take before it started working, she said 3 months. I just broke down there and then, too tired of being too strong for too long. I had had a discussion about my symptoms with my GP the week before and I understood at that time that it was not safe to have HRT so I didn’t even broach the subject. She decided to phone my GP and together they both came up with a tablet named Dixarit. I think it is primarily used for migraine but does something with the blood to lessen hot flushes. Anyways, just 3 weeks after starting Dixarit I noticed a slight decrease on the severity of the hot flushes. But it did not reduce the frequency etc.
The letrozole has since caused the severe pain and swelling in almost every joint in my body. My hands, my fingers, my thumbs, my hips, my knees, my ankles and every single bone in my feet. Getting up out of bed every morning is a real real challenge. I have been discussing this with my oncology nurse over the past couple of months. We were suspicious it was the Letrozole causing this and she decided it was time for me to see the oncologist again. But this time she told me my original oncologist was back doing locum for a couple of months and would I like to see him? I thought ‘hell yeah, this man saved my life’.
It was the best day of my life in years!! The oncologist was able to tell me that the swelling and pain is a condition called Tenosynovitis. I had already stopped taking the Letrozole 6 weeks prior to this appointment, the symptoms had not yet lessened because I had not had any treatment. He has put me on a one month course of steroids and oh my god, 3 days in, my ankles have a normal size again and I can actually stand without holding onto things. My little doggies wag their tails and run to the door because they’re able to go for a walk again for the first time in months.
So during the consult with my original oncologist, he told me that I could in fact have HRT now because all my risks have been taken away. And if I really wanted it, he would prescribe it. I have no breasts and no ovaries so he more or less said the cancer cannot come back there. I asked about my pancreas and he advised that it was not driven my oestrogen and I was not at risk by taking HRT.
I am pondering why the new oncologist did not suggest this the day I broke down in her office. I was an absolute mess.
I have yet to make a decision yet on the information I have been given. Has anyone here had any experience with BRCA genes, menopause and HRT? anyone taken HRT surrounding similar circumstances and had an improved quality of life?