BC Treatment fallout!

[bravetreacle]

Hi I am three years on from diagnosis of Stage 2 invasive lobular BC. Unfortunately as my cancer didn’t show on mammogram (20% don’t!) it had already spread through the whole breast and into one lymph node.

I was advised mastectomy, chemo radiotherapy and oestrogen suppression. All of which I have endured! Education and informed consent has been appalling throughout and I had no idea about the numerous long term side effects. I want that situation to change for people coming up behind me in order that they can make more informed choices. The numerous posts on this forum add fuel to that fire as healthcare professionals largely ignore our pleas and dismiss our side effects as inconsequential. They are not! They are completely life changing and life limiting. I went from athletic and fit at 50 to feeling and moving like I was 105!

I have had to do so much research to find the answers that clinicians couldn’t or wouldn’t give me! Now I want to help others have a voice.

There are almost too many things to post about! Yellow card reporting is really essential as it ensures side effects go from rare to common so then they might actually take notice. Most people don’t know how to do this or assume healthcare workers will do it for them. In most cases they don’t! Google it!

I sailed through treatment relatively unscathed and blissfully unaware of the long term fall out that was to come post treatment. Had I not asked for genetic testing or researched chemo options for my type of cancer I would have been given chemo I didn’t need! No one mentioned that I’d no longer be able to have a sex life, that I could be suicidal on AIs, get bilateral Achilles Tendonitis linked to Letrazole, have a post chemo rheumatoid reaction in my muscles and joints, suffer breathlessness and tachycardia just walking the dog, have FAI ( they told me I needed a hip replacement which I might in due course) alongside tinnitus, rapidly failing eyesight and complete insomnia where I am totally unable to sleep without meds! Had I known any of this for the small % benefits I would not have had many of the treatments recommended. Empathy is pretty much non existent as it’s not happening to them!

What are the answers? Research a lot and drive your own care! Get a second opinion where possible. Check that you really need the treatment and understand the benefit/ risk ratio. Potentially 100% side effects for a few % gain! Due to lack of research there is often only anecdotal evidence available which is why clinicians don’t always recommend things like supplements for example.  GTN patches are off label but worked wonders with my AT where nothing else did, COX 2 inhibitors helped with joint pain where standard pain killers didn’t. . Could you have Phisio for FAI rather than a hip replacement? I’m still working on the rest of it and will keep you posted. In the meantime report, report, report side effects and share on the forum until we get results. Be the solution that you want to see. Message me if you think I might be able to help. Good luck! X

[Kay0987]

I’m so sorry you’ve had such awful side effects. It sounds like you’ve been put through the ringer and I completely agree that everyone should always contemplate risk versus rewards of any medication. However, there is more than a few percentage points difference in recurrence rates for most of us on endocrine therapy. Mine is 7 percent for instance and I consider that substantial. Also, I don’t have any real side effects and I’ve gone through chemo and have now been on endocrine therapy for 4 months. None of it’s been easy but I’ve made a full recovery or am well on my way (just had reconstruction surgery over six weeks ago). From what my oncologist has told me, most do fully recover especially if you have a regular exercise routine. It doesn’t help if you don’t fall in the category of “most” though and I would love there to be a preventative medication that doesn’t have long term possible side effects on bone strength and cardiovascular muscles. But right now this is what we’ve got and it’s been proven to save lives. Unfortunately recovery from breast cancer, any cancer really, is just hard and the body can struggle. 

[Seagulls]

I fear I don’t know what FAI is or GTN

That’s another problem about professionals they do like their abbreviations.

sorry to carp

Seagulls

[Hayleigh]

Thank you for taking the time to help and inform. I was diagnosed with hormone positive breast cancer in spring 2021. I had 2 surgery’s and radiotherapy then letrazole. I was taking it for about  17months and I was housebound, total stranger to myself, in pain and felt 100. I spoke with a bc nurse and she approved with my oncologist a break of a month. I haven’t spoken to them since but I know I can never take them again. I can’t go back there. I admit I’m scared about stopping treatment and the possibility of it coming back but I just can’t ‘live’ like that. I’m gonna have to get myself together and get fit and stop hiding away. I’m 53 with a history of being so sociable and I haven’t seen a friend since it began. I look different, weight gain and hair loss and I can’t face people. I’m gonna try though and I appreciate your message. Take care  

[Jaybro]

Hi

You are right. Long term side effects can be intolerable. I’m in the position where chemo for metastatic bc builds on existing side effects from adjuvant therapies 4 years ago. I’m typing with numb fingers and no fingerprints. I went to sleep this morning at 5.20, according to my Fitbit. I’d had to wait for the inevitable cramps that came at 2.30 and led to a full half hour squatting on the loo. When I get up and dressed, I will need to have a rest through sheer exhaustion. When I go downstairs, I will clutch the rail as I have neurological damage from paclitaxel, and I will delay returning upstairs as that will be it for the day!

Compare four people on the same treatment and you will get very different pictures. If I’d been alerted in a meaningful way about how chemo, radiotherapy and AI would make me feel long term, I would have been even more reluctant to face the treatments. But I think almost every one of us would prioritise life at (almost) any price - and oncologists are there to give us a good a chance as possible. They have no way of knowing which patient will develop peripheral neuropathy or vaginal atrophy, lose their libido or develop body dysmorphia. In fact, that isn’t their job - it’s for other clinicians like GPs to address. And that’s where the problems partly lies - GPs are not well enough educated on the side effects of cancer and cancer treatment. Most don’t want to know.

Oncologists’ job is to get rid of every trace of cancer to prevent recurrence and/or metastasis. That’s why we have such an armoury of treatments. But even with genome sequencing and other new developments, cancer remains an insidious disease and oncology an imprecise science. So they have to throw in treatment after treatment on the offchance that it may work. Destroying the cancer has to be their priority over side effects. Research has to focus on finding better (and easier) treatments for individual cancers. Funding is limited. For that reason alone, much as I agree that the situation is unacceptable, I foresee little change.

It seems that you were treated by an unsympathetic team. My oncologist takes action when I report any side effect though there are times when he has to, apologetically, ask me to persist. And I do and I am defying the odds for MTNBC - for now. Quality of life is not brilliant but there are days, like Friday when we were snowbound, when I could sit in the sun, gaze at a cloudless sky and feel that life is good (I have low expectations lol). There are other days when, glued to the loo at 2am, I question my sanity at putting myself through all this sh*t. I look at the members of my local support group and am awestruck at what they will tolerate in order to survive - most of them have young families they dread not seeing reach the next birthday!  It is heart-wrenching. You are three years cancer-free. With good fortune and the work of your oncology team, you should never be troubled by breast cancer itself again. It’s a choice and a gamble. I think most teams make sure people have some idea of what they are letting themselves in for (why else did I catastrophise over osteonecrosis unnecessarily?) - and why. Beyond that, no-one can know.

As to the statistical differences various treatments make, they are nonsense on an individual basis. For every patient where chemo is predicted to make a mere 3% difference, there will be patients for whom it will make no difference and some for whom it will make 100% difference. No one can know where they stand on that spectrum. Again, it’s a gamble and we have to decide what risks we will take for what potential gains.

Best wishes

Jan (PS. I had a clear mammogram too. I had “nothing to worry about” according to my breast consultant. That’s cancer for you).