Breast cancer, losing hope.

[Fuckmyliferightnow]

It’s been a long time since I posted on Mumsnet.

A bit of background, in October ‘20 I was diagnosed with invasive breast cancer, chemo was successful, I had a complete response after 4 rounds of Docetaxel. Surgery was great, lumpectomy with clear margins.
A year after chemo I started to get severe perimenopausal symptoms, pain in my spine mostly (which I had an MRI on, it was normal), no sleep, weight gain, palpitations, night sweats, anxiety, memory loss to name a few, all at once.

Oncologist refused to consider HRT so I went to a private clinic and spoke to about 3 different Drs who all agreed I needed HRT.
My GP fitted the Mirena Coil and HRT solved all of the issues, it has been a godsend.
I was a late starter with Tamoxifen as I was already getting symptoms and I didn’t want to make them worse, plus I was told I had such a good prognosis I probably didn’t need it.
So I started taking a lower dose of Tamoxifen when I started HRT last autumn.

Fast forward to now, a routine mammogram has shown I have an Intermediate DCIS, which is upsetting but good it was caught early. I am due surgery in August to have a mastectomy.

The problem I’m left with is I’ve had to stop all HRT and I’m in agony, pain killers don’t help, I’ve been put back on codeine and Zopiclone to help with sleep, how is that good for me?
I feel dreadful!

I’ve just lost all hope, I’m 44 with potentially many years of work ahead of me, I can’t do this, the pain is too much.

Equally I’m terrified of this happening again or worse.
I feel like my life may as well just be over.

I need help!

Oh god that sounds rotten, sorry. I don't have experience of this but could you see a pain specialist, maybe you'd feel a bit better with some treatment for your pain and menopause. I hate zopiclone, I have a different condition and had a variety of drugs at times but something that has been a game changer for me was propranolol a beta blocker for anxiety. I had to suggest it. It treated my anxiety immediately which had a knock on effect for pain and sleep. More impactful for me than serious MH meds. I couldn't get HRT due to bc risk and was v depressed. I hope you find something to help.

So sorry to hear this. I had BC 4 years ago so know the ins and outs.
My menopause was pre breast cancer and quite bad but I never got HRT. I was worried about the risk of breast cancer. Oh the irony.

First I will say that it passes. Almost all the menopause symptoms either go away completely or fade. Many things I had I never even knew were related to menopause.
So if you can't take HRT you need to approach each symptom and try to get help for them.
pain in my spine mostly (which I had an MRI on, it was normal), no sleep, weight gain, palpitations, night sweats, anxiety, memory loss to name a few, all at once.

Have you asked for help with the anxiety as that might ease some of the other issues - sleep and palpitations for example?

So sorry to hear this.

I don't know who you have seen so far, but if you could see Prof Nick Panay he is the leading meno specialist in alternative treatments for complex cases.

Have you had a bone density scan to check your spine? MRI scans won't look at the bone density.

Im so sorry you're going through this. J had it from the opposite perspective.
My breasyt cancer treatment threw me into a very abrupt menopause. I never had the opportunity to use HRT, my Consultant was adamant that I should not use it.

All I can say is, you will get through it - honestly. Everytime that sickening feeling starts as a red hot flush sweeps up your body, congratulate yourself that you're still alive and kicking 😉

Oh God, what I would give for a 10 second edit button. Sorry for typos🙄

Were you ER+? X

I am unable to have Beta Blockers as I have asthma.
I'll have to check about going back on anti depressants before my surgery, but I think I need to go back on them.

I think this can last for years but I'm worried about my future health too as I've seen a close family member age without hormones and it's affected her badly, this terrifies me.

I will look into Prof Nick, thank you.

I'm glad I'm alive
Yet I feel like I'm grieving the loss of the old me, I'm so sad.

@JinglingSpringbells I've read that Nick Panay has left Chelwest? The place has gone to the dogs. Appalling service. Maybe he is a available at a financial cost?

OP, breast cancer survivor here. I was refused HRT for months and months. The whole BC and HRT debate is shite, I know first hand. Also, don't take the whole " being grateful for being alive" crap, whilst you are suffering. You have a right to a decent quality of life.

I don't know where you are based geographically, but Dr Paula Briggs is the chair of the BMS. She prescribed HRT for me, with a history of aggressive BC.

Alternatively, look up other specialists who can help with complex cases. They are out there.

I have the greatest of empathy for you. It's hell.

Xxx

Re 'grieving the loss of the old me' - I had radical mastectomy x 1 chemo, rads, mastectomy number 2, oopherectomy, reconstruction....... the one and 9nly time I really broke down was when I was packing f9r a holiday, opened the suitcase and found bowls and spoons we had bought when backpacking around Thailand.

It hit me so very hard that I would never be that person again.

The person I am now is pretty okay though OP.

You WILL come through the other side xx

Agree with the PP re: the grief. M
I suffered awfully after my mastectomy and even more so after reconstructive surgery, I hated it.

But, many years later, I have accepted my body for what it is.

You will reach that point too.
One step at at time 😊 x

@Runaround50 I think you are right on that but not sure. I know he is working on new treatments especially for women who can't take HRT. Yes, he has a private clinic and fees are on his site. I know too that there is a lot of controversy over HRT and BC, with many different views.

@JinglingSpringbells yes the controversy just keeps on continuing.

Suppose we need more Nick Panays on the scene; preferably without the cost.

I have asthma and was given calcium channel blockers as I can't have beta blockers, not for anxiety though so may not help. Actually I think there is an excess of caution over beta blockers and would happily try them myself if I was allowed.
Have you seen a physio about your back? Not an osteopath or chiropractor but a proper physio.

So many replies, thank you.
I'll try and reply as much as I can.

I haven't had a density scan but will push my go for this.

My cancer was ER+ PR+ and HER2+, grade 1 no lymph node involvement. This time it's been caught super early.

I feel sad for my health and the pain my body is in, I have never had pain before chemo, now it's all the time.
I know what you mean about never being the same person.
I feel this about the pain.

I am being referred to to physio on the NHS but will wait ages, also I have surgery in August so no point in referring myself til I'm recovered. I won't get seen before then.

Sorry to hear things are so difficult. I had breast cancer in 2021 and did the year's chemo, surgeries, radio, Tamoxifen etc a few years older than you.

I am not sure if anything of this will help but wanted to sympathise and say what has helped me. Firstly I swim a mile twice or three times a week, this helps me mentally and physically and means I have not put on weight and am managing without anti-depressants despite cancer and a hospitalised child. I would say its a skin of teeth thing though and I have been told you can take certain anti depressants with Tamoxifen though I am reluctant to add to side effects. Memory mine has improved a lot by researching and keeping brain active and its almost back other than I get brain freeze sometimes where everything goes from my mind. But its so much better than just after chemo. Night sweats etc I find sugar can trigger, not that I have done anything about that as I love sugar. Pain goes with Wellwoman 50 vitamins though it depends what causing but worth looking into vitamin deficiencies. Sleep is awful though I sleep at some point. No HRT, advised against. Days out help, canoeing, wildlife. Though agree with you will never feel like before sadly. I do have neuropathy, hair is chemo curls which I hate and breast chopped off and face I think is slightly swollen but it is getting there. And massive sinus issues and only thing solves is sauna, steam room.

I've had BC I can recommend acupuncture for night sweats ( reduced with one treatment and gone in 3) and to help pain along with magnesium and vit D

I'm really sorry that I've bumped an old thread of yours Fuckmyliferightnow. I hope you're ok, I'm so sorry to read of your update.

I am on hrt and dialling down due to hormone positive bc, then post surgery I will be going onto tamoxifen. They've said no hrt at all 😬- and I've been here under another name seeking and starting hrt. It wasn't always perfect though! But I was in peri.

I have been extremely scared dropping the hrt as well as starting tamoxifen so I do understand how hard this is. I also have predicted it will hit me further down the line, now knowing how hormones or lack of work!

I have been working on how to manage all this; I certainly recognise all your symptoms.

I have asthma and can take beta blockers, I only noticed a slight issue when I it was bad with a virus. But everyone's asthma is very different, I can take ibuprofen but only do so if I really have to.

Palpitations can be apparently completely normal but I also find them very bothersome. They've gone back now but I had a heart trace a while ago and no issues.

For me brainfog and joint pain is the hardest thing to deal with. I'm happy to share some tips if it helps.