Forum Discussion

Sheeba's avatar
Sheeba
Member
4 years ago

Terrified to sacrifice my bones

I am 42 and have just completed neoadjuvant chemotherapy,  3 lumpectomies and radiation for stage 3 breast cancer...now I am about to start hormone blocking treatment. 
I honestly expected to be given tamoxifen and was prepared for those side effects, but my oncology recommended letrazole and a monthly ovary suppressing injection ( I have not has a period since chemotherapy but the oncologist said the injection will ensure no oestrogen is made in my ovaries)
I understand aromatose inhibitiors are slightly more effective in preventing cancer recurrence and want to survive, but I am shocked by how my bones will be affected. 
I was surprised that my bone scan showed my hips were on the lowest end of normal for my age and that my spine is in the pre osteoporosis stage. I already have muscle pains in my legs at night and joint stiffness and I am honestly terrified of becoming decrepid with bone deterioration and wonder how my life will be from now on.
When I felt positive I have thought about continuing to exercise and add in weights but I am stressed by the thought of fitting all this in and trying to pick up a "normal" life again. 
Can anyone in a similar situation give me tips on how they have managed this please?

5 Replies

  • Sheeba's avatar
    Sheeba
    Member
    4 years ago
    Thank you for the prolia information,  I will speak to my oncologist about this.
    Congratulations on being so close to the end of your 10 year!
  • Afraser's avatar
    Afraser
    Member
    4 years ago

    If planning to take Prolia to reduce bone thinning (when on Letrozole) you may wish to discuss the following with your oncologist. I’m in the last year (tenth) of Letrozole treatment and have some osteopoenic areas. My oncologist is willing to stretch the guidelines and provide injections but I think I will hang out for 12 months. If I was much younger and osteopoenic at the start of treatment, I’d probably have a different response. The info is from Prolia’s online information. 

    Increased risk of broken bones, including broken bones in the spine, after stopping, skipping or delaying Prolia®. Talk with your doctor before starting Prolia® treatment. After your treatment with Prolia® is stopped, or if you skip or delay taking a dose, your risk for breaking bones, including bones in your spine, is increased. Your risk for having more than 1 broken bone in your spine is increased if you have already had a broken bone in your spine. Do not stop, skip or delay taking Prolia® without first talking with your doctor. If your Prolia® treatment is stopped, talk to your doctor about other medicine that you can take.

    Best wishes. 
  • Sheeba's avatar
    Sheeba
    Member
    4 years ago
    That is so reassuring thank you MicheleR.
    You have motivated me too.
    I hope you have a lovely weekend 💗 
  • MicheleR's avatar
    MicheleR
    Member
    4 years ago
    Hi @Sheeba,

    I was 48 when diagnosed and have had mastectomy, chemo and radiation. Like you I have preosteoporosis (osteopenia) in my femurs. I take exemastane which is an aromatose inhibitor as well as the monthly injection. My oncologist has had me get a bone infusion every 6 months for 2 years to strengthen my bones. You could ask about this. I find this is quick and little side effects. It is important to do exercise to keep your bones strong.

    Regarding the aromatose inhibitors vs tamoxafin, its probably because you were stage 3 and you are relatively young. They want to give you "the works" to give you longevity. I was stage 2b which for me was large tumour no lymph nodes. The grade of your tumour is also taken into account. 

    I choose to do vigorous exercise 2 or 3 times a week. Yes it is hard to juggle sometimes. I have teenage children. I was never an exerciser before but now i really enjoy it. Ive been doing exercise since chemo about 1.5 years ago. 

    Aromotose inhibitors affect people differently. I get sore elbows and hips but when i exercise it lessens. I do get hot flushes and i was getting night sweats which i blamed on the ais but this has turned out to be sleep apnea. Now not night sweats. 

    I just take things day by day, week by week. Some weeks i dont fit everything in. But overall im getting there. I work 20 hrs a week in order to prioritise my health and kids.  Im also able to fit other things in like craft and coffees with relatives. Life feels more balanced. This is my choice. 


  • Locksley's avatar
    Locksley
    Member
    4 years ago
    @MicheleR do you have any advice. 

    Wishing you all the best.  I'm on letrozeole.  I'm 54.