Endocrine treatment.

[Tilly101]

Following diagnoses of stage 3 invasive breast cancer and surgery in March followed by 5 weeks Radiotherapy l have been unsuccessful in being able to tolerate either Tamoxifen or letrozole due to it exacerbating my existing joint and muscular pains..

I have been given a couple of weeks respite from taking either of these treatments to allow me to make a decision whether l wish to proceed with endocrine treatment of not..

Your views on this would be greatly appreciated..

Thank you.

[KathrynA]

Hi Tilly101,

Greetings from Vancouver!

I am sorry you are going through all this.

I am 62 and have Stage 3A, Grade 3 breast cancer. I had a mastectomy, chemo and radiation. I have been on Letrozole for 1 year and 8 months. They have to list and warn patients about all the side effects but I was told that most patients tolerate it well after time. For the first few months my bones and weight bearing joints were really really sore and I moved like a 90 year old. But I stuck with it and walked at least 45 min. a day even though I did not feel like it at all. Anyway, now I don't notice it and feel so much better! I realize every body is different, but I would stick with it. I seriously deliberated about quitting but it is a super useful and helpful drug for extending our lives, which is what it is all about!

Today, almost 2 years after my mastectomy, I am happy to be seeing my plastic surgeon about my DIEP reconstructive surgery sceduled on Monday.

Take care,

Kathryn

[Tilly101 in reply to KathrynA]

Thank you Kathryn for your positive and helpful reply.

I am pleased your reconstruction surgery is imminent and you are now Cancer free l hopefully the surgery will be a walk in the park compared with what you have already gone through...

Re the Endocrine treatment l am at the peak of pain with Fybromyalga which was first diagnosed when l was 25 every muscle and bone hurts and the condition has definitely got worse since the Cancer diagnosis ..

I took the Letrozole for 2 weeks followed by the Tamoxifen then l was told to stop taking it for 6 weeks then try again - the 6 weeks is up this Monday when l see the Oncolgist again ...

Part of me feels l should stop taking and face the Cancer again if and when it returns..but l have a few more days left to decide...

Enjoy the sunshine in Vancover and thank you again for taking the time to reply its very much appreciated..

Warm wishes.

Tilly..

[Semple]

Tamoxifen alone was my first line of treatment when I was diagnosed with stage IV metastatic breast cancer June 2018, at age 79. I was on it for 3 months, without any side effects. However, CT scan in October showed increase in size of multiple metastic adenopathy in the left lower neck. November 2018, I started Ibrance & Faslodex & Zometa infusion every 6 months. Everything was fine until July 2020, Pet scan showed left breast module increased from 2.8 to suv max 5.6. August 2020, switched to Femera, Ibrance, Zometa. November 2020, Pet increased size of breast mass now SUV 7.8 and new 8mm axillary node. I started feeling pain in my left breast, the mass felt more solid and I was afraid it would burst out of my skin. I had a lumpectomy January 12, 2021. Feb 2021 restarted Femera/Ibrance. May 2021Pet: disease progression including a new 9 left posterior trigonometry node with SUV max 2.9, an enlarging 12mm left posterior trunk followed with SUVmax 5.0 compared to 6 with a SUV max 2.6 previously. Progression of osseous metastasis L 6th rib, R femur, posterior L iliac. June 27, 2021 started Zeloda, 1500mg, po, 14 days on/ 7days off. June 17, end of week off, developed G3-4 diarrhea/hand/foot, requiring admission 2x, scheduled Imodium/lomotil. Received octreotide x1. Took 3 weeks to recover. Scheduled for a Pet tomorrow. I will be 82 this year and I know I have few options left. Tully 101, I didn’t mean to go on and on with my prognoses. I pray your next treatment works.

[Tilly101 in reply to Semple]

Hi Semple,

I don't know what to say without sounding pathetic and banal - we just have to keep our heads down ,grit our teeth and get on with it.

You are in good hands and are being cared for l send you positive thoughts and well wishes..

Thinking of you.

Tilly.x

[Dimsdale18 Partner]

You can speak with someone by calling SHARE's Breast Cancer Helpline 844-275-7427. Everyone who answers is a breast cancer survivor. You can ask for first hand experience with your side effects.

[Tilly101 in reply to Dimsdale18]

Thank you Dimsdale 18 for your reply.Share have been very helpful as I contacted them when l was first diagnosed.

I had my appointment yesterday with the Oncolgist and it was my decision not to have Endocrine treatment due to my being sensitive to drugs and having unpleasant side affects.

I feel relief now having made that decision as it had been playing on my mind since March..

Have you finished your 10 yrs of Tamoxifen?

Warmest wishes.

Tilly.x