Hello,
I am 4.5 years on from the start of treatment for breast cancer. 3years plus from being started on an aromatase inhibitor. I was initially told I was Her2+ and hormone-negative. I only found out about the ER+ part when my operation following chemo was cancelled and put on indefinite hold because of the covid crisis. At this time my daughter who came with me to talk to the surgeon asked them "And you are sure everything is being treated" I was having 3 weekly Herceptin injections. His immediate response was a dismissive of course he then after looking down at the file in his hand gulped and said oh no what's this? A week later ER+ was confirmed and I was put on an aromatase inhibitor, Letrozole (Femera). After 5 months of rapid weight gain worsened arthritis etc I was changed to Exemestane (Aromasin) and have been on this for about 2.5 years. I am by the way 74years old and had arthritis although nowhere near as bad now as before cancer (Randomly it was much better when I was having chemo, in fact, any pain from it went) Arthritis has gradually been getting worse, especially over the last year and I find it painful to walk. A recent X-ray has also confirmed that besides my feet/ankles and knees, it is now in my pelvis and lower spine. My GP suggested the aromatase inhibitor could be making it worse and I asked for a referral back to Oncology. I wanted to ask
1. If he could double-check that I was ER+ as well as Her2+ and was the level significant that the aromatase was called for. I never saw my Oncologist following the start of covid as it was only phone calls. I did at one point query it during a call from one of his staff who said, yes I needed it because of the chest wall. I never found out what was meant by this, at the time I was too taken aback. I was discharged shortly after this. So I also want to know what was meant by needing it because of the chest wall.
2. I also wanted to ask about a possible break from it.
3. I wanted to ask about a small fleshy mound underneath the scar line from my non-reconstruction double mastectomy. The mound is only under one of the removed breasts the skin is taunt under the other scar. I doubt it is anything but it is maybe some what bigger as I am noticing it more.
4. I wanted to know how they could be sure my extra aches and pains are due to arthritis and not to any secondary spread. Could I have a scan maybe to check or is there a blood test check. Not having any breasts I don't get any mammogram checks.
I did not get an appointment just a call from his secretary who said I was to take a different brand for 3 months to see if this make any difference.
MY concerns besides outrage that a secretary is now the person who gives over the phone medical consultations are
1. I am on the brand named exemestane Aromasin and I very much doubt the coating of this original tablet is to blame. I know from the online Macmillian strands that many ladies have found some brands suit them better than others and understand this is due to the different coatings. I am very much afraid that another brand will worsen my problems not improve them and also that I could be years going through the different brands if I have to stay on each for 3 months. PLEASE can you advise me about this? When I tried to raise my concern with the secretary just just kept repeating he is the consultant and this is what he says.
2. I didn't get a chance to ask any of my other queries. Surely it is not unreasonable that I have a face to face appointment. What should I do? I am thinking of writing to him. My GP is generally very supportive but was not much use when it came to explaining all the terms for example in my discharge letter.
Your advice would be very much appreciated.
Thank you
Rozalia
