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Side effect worries

I was diagnosed with stage 3 estrogen positive breast cancer in 2021. Had chemo, then mastectomy, then radiotherapy.

Now 3 and half years of taking Anastrozole Hormone therapy and I am beginning to struggle with stiff aching back and hip pain. I was told to take Calci-d and admittedly have not really took it as again side effects with that. My stomach feels bloated and constipation sets in.

I have my 4th follow up appointment in couple of weeks and should I ask for bone density scan to see what effect the Anastrozole has had on my bones as I am scared that maybe I am on the brink of getting osteoporosis as the pain now is constant every day. I have only had one bone density scan before I started the hormone treatment in 2031 so should I have had more by now?

I really don't know what to do for the best as hate all the side effects of all the treatment.

A lady I met who had the same diagnosis as me has just died as her cancer kept coming back and unfortunately the chemo she had affected her liver and she died from liver failure a month ago. This scares me as it wasn't the cancer that killed her in the end but the effects of what the treatment did to her.

It really is a very scary thought going forward of what is the best thing to do. Of course I am glad the cancer has gone but even after a whole years treatment I am still suffering with the effects of the hormone treatment just hoping it will keep the cancer away.

I am going to try and take half of the Calci-d daily and see how I get on with that but obviously it probs won't be as effective in helping my bones. Maybe any help is too late now for my bones.

Also If they offer to change my Anastrozole and I try another aromatose inhibitor I will still get other side effects and my consultant did say that Anastrozole was the best one to be on and wants me to stay on it but I don't know how much longer I can put up with the pain in my bones Without needing the help of another drug which will add further side effects.

They say they want me to be on hormone treatment for 20 years, is that really necessary. I have had 3 and half years so far but I know my bone health has definitely been affected after this short time. The thought of Osteoporosis is scary also as possible bone fractures really scare me as live alone with steep stairs so how I would manage with a fracture is unthinkable really.

I just do not know what to do for the best.

Tracey

tracey16

1

Re: Not sure what all of this means

Thank all of you. I was thinking I would see if I could record it, my app will transcribe it. Been reading about lumpectomy & radiation treatment vs. having a mastectomy.

I will look into the virtual support group. Thank you again. I'm not a social person so knowing I have people to "talk" to means a lot

july31

1

Re: My Husband, My Life, My Love, My Family, My Cancer

Irishlove - if only your sister could walk in your shoes for a day or too. What a gut punch to lose her support. Our oldest daughter always asks me how I’m doing. Our youngest never asks but she sees my demise on a regular basis (at least a couple times a week).

It’s ironic that we all complain about our arthritis getting worse on our meds yet there is never any clinical correlation! When I saw my oncologist last week I complained about the anastrozole affecting my joints. She negated that theory and said that drug makes for a more generalized ache all over. Not sure I believe her….

goldensrbest

4

Re: My Husband, My Life, My Love, My Family, My Cancer

@candy-678 - Yes, those anti estrogen drugs really do promote and aggravate arthritis! I feel like my parents seemed to me when they were 10-20 years older than I am now. I think no matter what age we are, these drugs makes us feel much, much older. It's such a shame!

threetree

3

Re: Phesgo vs. H&P side effects

I did not suffer fatigue when I switched to Phesgo, but I did feel like those minor Herceptin side effects which had subsided, came back again. Those were the itchy skin and constant runny nose/watery eyes like I had at the beginning of Herceptin IV.

I was also getting a reaction at the injection site (I’ve described it in other posts here) if the injection was given at the top of the thigh like the literature recommends the nurses do. Redness and and even stiffness of the muscle….this did not happen when I was injected on the side of the leg.

Glad to hear you are feeling better now with IVs.

olma61

1

Re: Nervous about switch from Letrozole to Exemestane

I’m so glad to find this thread! I have been on letrozole for over 2 years now and the joint pain, fatigue, bladder leaks, and trigger finger are getting worse. I took a drug vacation for my 3 week actual vacation and was feeling much improved. I even stopped worrying about having extra bladder pads in my purse.

Now back in the US and back on letrozole for just short of 3 weeks, all the side effects are back. So what are the side effects of exemestane for the former letrozole ladies? How long did it take before you knew what side effects you were getting?

kathrynw1thasea

1

Re: Nervous about switch from Letrozole to Exemestane

Today is my first day on Aromasin/Exemestane I switched from Anastrozole. I started Anastrozole in Feb 2025. Lots of side effects, hair loss, fatigue, join pain, just to name a few. I took a 2 week holiday and felt better. Restarted Anastrozole and the side effects came back. Switched to Aromasin today. Cautiously optomistic se's will not be as bad on Aromasin.