Starting hormone therapy

Going through breast cancer treatment Hormone therapy
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I’ve recent been diagnosed with stage 4 breast cancer which is hormone receptive.

I’ve had the implant to induce menopause and am starting on Letrozole in a couple of weeks.

They want to put me on another medication as well but one of the side effects can be inflammation of the lungs and I’m currently suffering from breathlessness.

I’m with the respiratory team and they aren’t sure what is causing the breathlessness.

I’m not looking for negative feedback on hormone therapy. The team believe it’s just as effective as chemo.

Anyone had any success on this treatment? I’m desperate.

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Hi there, my understanding of letrozole/hormone therapy is that is is indeed very efficacious with hormone receptor cancer cells. That’s where I’m headed too.

I was already -but only just -post menopause when I was diagnosed with ER/PR+ IDC. Im guessing you are younger than me/still ovulating- hense the implant to induce early menopause?? Sorry, not up with implants but:

Could this breathing issue be the implant?? Sorry if that’s a stupid question.

I mention it because, at my worst, prior to starting hrt, I too had breathlessness. I felt like I was starting with asthma (had it bad as a youngster). And the menopause doc said it’s not uncommon to experience respiratory issues and sinus problems/allergies if your estrogen level suddenly drops off a cliff.
How bad is it?

Obviously, you need it looked at to make sure your lungs are ok and your heart is coping, but it’s worth looking at the estrogen drop as a possible culprit. Im no oncologist/doc but I would expect your specialists would look at that as a possible?? But in any case, it wouldn’t hurt to ask the question, if only to rule it out…

Once I found a hrt that suited me, it improved dramatically… so the drop in hormone definitely did affect MY breathing but it never felt that bad that I couldn’t cope…
I’m not sure how that compares to your situation, or if any of this helps but I thought I’d say so anyway…

Anyway, I hope you get to the bottom of it soon, it’s obviously a worry. Hopefully whatever IS causing it, fingers crossed that they or your BC MDT can help you with it.

All the best
:crossed_fingers::crossed_fingers:

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Thanks so much, sorry to hear you’re on a similar path.

I’ve had the breathlessness for nearly a year and they don’t think it’s related to my diagnosis.

I’m going to get a second opinion on both my treatment and the breathlessness as I don’t think they’re being aggressive enough in treating it.

I’m not looking forward to the onset of menopause and yes they’re inducing it so I can start the Loztropole.

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Good morning @kbm, I think a second opinion is sensible. If it’s been lingering for a year or more, it’s about bloody time they got you some answers!! You need your strength for the breast cancer treatment.

It’s really difficult to predict how you’ll fair with induced menopause. Some sail through and some don’t -induced or not. I struggled a bit but we women are tough cookies when we need to be. Strap in- get through it and all the very best to you.

getting through your cancer treatment, in tact, is paramount for your long term health so keep pushing for answers. It’s your quality of life that’s important as well.
Anything that makes the next few years harder, if it can be addressed, it should be. If for no other reason than it’s one less thing to bloody well fight!!

Good luck to you. Go get that cancer :muscle::muscle:
Xx

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@kbm just thought I’d check in & see how you getting on??
I hope you’ve had some more productive conversations since our last posts on here :crossed_fingers::crossed_fingers:
There’s an awful lot that they can do with medication to control stage 4 these days and let you get on with living your life.

I had to have another lot of surgery after my first lumpectomy but I’m getting there. I’m heading for radiotherapy a bit late to give me time to heal properly but, tbh, I’m glad of the break. It’s nice to just feel normal sometimes :wink:
All the very best to you.
Xx

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Thanks for checking in and I hope you recover well.

I started my letrozole yesterday and am not looking forward to the side effects!

The implant gave me more energy which was amazing but I believe letrozole can give you fatigue. They want to start me on another drug but one of the side effects is lung inflammation and I’m already suffering from breathlessness.

I’m also with the respiratory team and under investigation. I’m suffering from a lot of pain where my lymphs are as well! There’s a lot going on.

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Hay lovie.
I wish you luck on the letrozole. Some women tolerate it very well but, like everything’hormone’ it’s always a mixed bag :crossed_fingers::crossed_fingers: it’s very effective though, so should really give you an head start in controlling your migrating critters!!

The lymph pain is very likely your nerve endings trying to heal. I get weird sort of sunburn sensations and stabbing sorts of sensations still. It was in my armpit but seems to have moved to mid, outer arm now :face_with_peeking_eye:… lord knows?? It’s all very odd. But they seem to think it’s all normal. I always feel like shouting “nothing about any of this is ‘normal’ to me, mate!!” It’s all decidedly abnormal :roll_eyes:

What you said about the implant made me smile. When I first stopped the hrt, I also felt great… I also lost half a stone without trying (happy days!:grimacing:). No idea why…

Anyway, I hope the energy increase balances out your letrozole lethargy and you find a happy medium.

I need to start on my anastrozole but I’m giving myself this bank holiday to feel normal before another onslaught!

The other meds you mentioned might be for your bones?? Is is a Bisphosphonate?

When you speak to your oncologist ask if there’s any supplements you can take to protect without taking something else as well. You might need to anyway, of course, but I’m looking at Vit B/calcium and joint supplements… I need to get more info but I’m happy to share after Wednesday.

Just re read your post above and it doesn’t sound like a bisphosphonate if it can cause lung inflammation… the bone hardeners can cause digestive issues etc early on but they don’t effect everyone like that…

With you being stage 4, they’ll be throwing everything but the kitchen sink at it, to get on top of everything- get it in retreat. Then they’ve a good chance at controlling it, so you can manage to get on with your life for many happy years to come.

I wish you all the best… hopefully the letrozole side effects will be kind to you :crossed_fingers:. I think sometimes it would be nice to hear more positive things about these drugs. They ARE effective but we always tend to hear only from those who struggle with them. And I know it’s dreadful for those that do, but not all ladies have such a bad reaction. A lot do very well on them. A bit of stiffness first thing, dry hair maybe. I hope we are both, very much, in the latter group. I think your age is a big bonus . Very best of luck to you. :crossed_fingers::crossed_fingers:

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Thanks all. I had a bit of a nightmare, suffering from pain in my armpit, a swollen arm, numbness, vomiting and a new mass on my breast bone. My hospital was less than useless and I was told on Wed even if it is progression, they wouldn’t change the treatment.

I’m still chasing up respiratory as I can’t start the CDK4/6 inhibitor until the respiratory issues are diagnosed/treated. I sent a message to PALS as I’m not happy with my care. Ultrasound hasn’t even been organised and it’s been over 2 weeks. My specialist nurse just said to take paracetamol :roll_eyes:

Obviously I want to start the other medication asap as it’s considered more effective.

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Oh Lordy, what a time you are having! It’s outrageous that they haven’t sorted your scan yet! You do right complaining to PALS. I did the same thing after haematoma complications and a fateful weekend of A&E, which added insult to injury, quite honestly. The fact that I had recently had breast cancer surgery didn’t seem to factor into anything- and it bloody well should!

I ended up needing another surgery and have since turned a corner, but you really do need to push, push, push these days. It’s just hard going when you keep coming up against brick walls. Keep being a pain in their butts! Then they won’t forget you lol!

Good luck lovie :hugs::hugs:

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