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Rare condition and radiotherapy

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Re: Rare condition and radiotherapy

Hello,  I hope you may have got some answers from your medical staff.  I'm afraid I don't have any suggestions to help but I just wanted to say that you are not on your own as I think I have some type of endocrine quirk. It is a very long story (going back to 2017) but I was thought to have mild acromegaly.  Symptomatically I appear to be and my pituitary is on the top end of normal size (no tumour) but bloods are normal and eventually they said it was chronic fatigue syndrome. Ive been back to Endo last year for the 4th time and asked about psuedoacromegalodism (conditions that can mimic acromegaly) and signed up to the 100,000 Genome Project re Child Growth syndrome (could be up to 12 months until my genes are done.  I was diagnosed with DCIS July 2014 stage 1 grade 2 on biopsy,  grade 3 following surgery. It was only a 1.5 cm lump and no spread to surrounding tissue or lymph nodes. I was very borderline for chemo but  had 4 X FEC.  I had my hair down to the wood and the cool cap and kept my hair and only minor other side effects except for fatigue on top of the CFS. I was on a clinical trial for radiotheraphy (had more and more high powered) with no issues. I am on aromatase inhibitors for 5 years. Zero side effects for 7 months then they started. The CFS has more than doubled, I have joint and muscle pain and my manual dexterity is getting poor as is my eyesight. I have toe nail fungal infections that wont resolve. Side effects should start soon after meds start and settle over time but Im doing the opposite and nobody can tell me why. Ive switched from Letrozole to Exemstane to Tamoxifen (they thought I might have developed type 2 diabetes after 6 months (fortunately not)  which would have been rare and when I came off it for a 6 months break for respite my hair started falling out.  Im now on Exemestane again. Its all very odd but I think its Endo related. I really hope you dont have such a hard time if you have to take meds after radiotherapy. If there is anyone elseout there who had a pre-existing endocrine condition prior to breast cancer any information they have which may help would be appreciated. 

Member

Re: Rare condition and radiotherapy

Thanks Helena, they are, yes. But being a rare condition nobody can tell me what to expect. There can be bone effects with radiotherapy is all they know. I already have severe fatigue. Thanks for replying xx
Community Champion

Re: Rare condition and radiotherapy

Skylark

 

I presume that your breast care team are fully aware of this, I think when you go for your planning appointment they will check medical conditions out with you as well so you can advise them then.

 

Helena xx

Member

Rare condition and radiotherapy

Hi all, I have a rare endocrine condition that causes my calcium and potassium levels to crash without warning. It can be life threatening. I had an invasive ductal carcinoma stage 1 under 2cms with clear nodes . Just wondering if anyone else has a difficult condition to manage and how radiotherapy might affect it? Thanks