Apologies if my post is long. This is the first I've posted but have other cancer related questions so will post then elsewhere. Since lumpectomy in July for early stage invasive ductal breast cancer, delayed radiotherapy in November because I had major surgery for something else in August which resulted in sepsis and a bowel obstruction and then 4 months of Letrozole things seem to be deteriorating rather than improving recently. I had some mild discomfort initially extended under my armpit and round on to my back where I have a numb, tingling/neuropathic pain type sensation which doesn't bother me. I have a large rectangle of darkened but healthy skin in those areas due to radiotherapy. When started on Letrozole I quickly realised it was exacerbating some of my other chronic pain symptoms, hot flushes back with a vengeance which I am struggling to deal with and a really unpleasant metallic taste in my mouth I had been blaming on oral thrush as that took a while to clear up after surgery. I dedided I was feeling too unwell already as I am struggling to recover from the surgery to continue with Letrozole. I told the Oncologist I'd stopped it and didn't want an alternative which she was ok with and suggested that early breast cancer was hardly the priority having looked more closely at my Urology and gastroenterology notes. That does mean I'm completely discharged from the hospital although am still to have yearly mammograms and an appointment with the breast surgeon a year after last years surgery. If the next mammogram's fine I'll opt out of the surgeon appointment. I started to notice I've been getting quite a bit of collarbone pain over the last few weeks. I intially blamed it on the way I was sleeping but since sleep is something I've rarely done over the last thirty years and that's been worse since November 2021 as I can't sit or lie down due to severe sacral pain caused by nerve compression. The collar bone pain extends across the centre of my neck, under my jaw and into my mouth, throat and ear. I don't have tmjd. Has anyone experienced this following radiotherapy? and did it improve? I do have a history of oral problems, including severe pain around my left tonsil, the back left section of my tongue and the left hand side of my throat. This makes eating really painful so massive weight loss, problems with swallowing, choking and speech as well as lots of sores in my mouth. I had my tonsils removed urgently about 4 years ago because of suspected cancer, which it wasn't, Since then I've etold it's most likely a form of neuralgia but I didn't ever experience collar bone pain previously and the throat pain itself is much less severe than that triggered by neuralgia. Morvern.
Hello ,
I am sorry you have to be here in the place none of us wanted to be - however, now you are here, you will see there is a great group of people here with a wealth of knowledge.
I am sorry my reply will be brief (hmmm will it though) as I only nipped on and need to finish a paper before I go to bed.
You are still very early days with your recovery - it might look healed on the outside, but inside there are lots and lots of nerves, muscle, fibres etc that have all been displaced, cut, pushed and pulled ..... so there is still a lot of healing going on inside. Please be kind on yourself and give your body time to heal and recover.
With regards to letrozole again I would say 'give it a chance' and remember there are so many ways to deal with the side effects - the various 'brands' can play a part in side effects - due to the different fillers or colourings they add in. One tablet that is not good for one person can be great for another.
Remember why we take the letrozole and 'what the letrozole is actually doing'....
The letrozole is taking the oestrogen 'out' of our bodies.... oestrogen is our bodies lubricant, our WD40 - so taking the oestrogen out of our body will cause our body to age quicker than normal - so we encounter the aches, stiffness (I had trigger finger... in my thumbs)....
In doing this having the aches etc - we know in a way the letrozole must be working and if it is working that means it is helping to protect us! 'C' uses oestrogen to feed on for want of a better word, so any reduction is of help. (I can't think of the right way to say that - I think you will understand me).
With regards to the side effects there are different things available to take to help reduce pain, aches, etc - some ladies are even told to take Loratadine, (sold under the brand name Claritin among others), it is a antihistamine medication used to treat allergies, however it can help ease certain side effects.
(I'm that tired I can't think right now, so I do hope this makes sense)....
I would say to anyone, as scary as it is, I was petrified to start taking it - I can remember it as clear as anything - I truly felt like I was never going to be the same, I thought I am going to take this (I take mine at night) and wake up bed bound - I had such a fear .... then one of the ladies on here said take it 'one day at a time' just see how you go and that is what I did and I will be honest I can't tell if I have side effects from the letrozole or if its just ageing - what I will say is 'give it a try' ..... imagine how your would feel if you never tried and something happened - at least you are giving yourself extra support (if this makes sense) - you might not get side effects and if you do .... you can stop of you can alter how you take them, half a tablet or every other day (I have to say ... I am not a Doctor and you would need to seek your Doctors advice on all this - these are my own thoughts and words).
Finally, so much for a quick reply hahaha ....
There is a tool you can access online called "Predict" this can give you ideas of life benefits from taking and not taking medications, etc, you and others on here might find it interesting to try......
Its called "Predict" it is on the NHS Website....
Predict is an online tool that helps patients and clinicians see how different treatments for early invasive breast cancer might improve survival rates after surgery.
What does Predict do?
Predict asks for some details about the patient and the cancer. It then uses data about the survival of similar women in the past to show the likely proportion of such women expected to survive up to fifteen years after their surgery with different treatment combinations.
Who is Predict for?
Predict is for clinicians, patients and their families.
Patients should use it in consultation with a medical professional.
Here is the link to the webpage....
I really hope this helps - and to all new on this journey, please 'try not to worry' ....
Also, look out for the AWAKE thread - we all tend to gather there both night and day - drop in, ask questions, have a laugh, a scream or just read the posts, again, link for the AWAKE thread is....
https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/general/128753/awake/1831112
x
