Hello, I have Sjogren’s Syndrome and would like to hear if anyone else does and what effect radiotherapy has had on them.
I had a lumpectomy in November and am still struggling with the decision. My surgeon was not aware that Sjogren’s is relatively contraindicated for radiotherapy, otherwise we may have opted for mastectomy with no radiotherapy. The margins and lymph nodes are clear. This must be about the toughest decision I have ever had to make!
Janet
I was a borderline case for Rads and I chose not to have it after much research because it was a belt and braces exercise and I was worried about damage to my ribs. I was scared of them cracking as they are displaced due to scoliosis. I had a spinal fusion as a child. Hope some body comes along soon to help you as I am not sure about your condition. What is it ? Love Tracy x
Hello Tracy
I think you replied to my post on the new members intro forum and I did try to reply then but it wasn’t shown. There has only been one other response but that was a message of support (very welcome) but not about Sjogren’s.
It is good to hear from someone who chose not to have radiotherapy. All the stories in the form seem so grim.
Sjogrens’ Syndrome is an autoimmune disease a bit like rheumatoid arthritis. It affects mucous membranes and connective tissue. This means, eyes, mouth, gut, vagina etc.
If you or anyone else, would like to know more have a look a this: http://www.bssa.uk.net/pdfs/informationsheet.pdf
The oncologist tells me I run a 10% risk of significant fibrosis and distortion of the breast as well as the usual so-called short term side effects. I am tempted to wait and see if I get recurrence before having any more treatment (I am on Letrzole) as life is uncomfortable enough as it is!
All the best Janet
Hi jmbrin
I too have sjogren’s syndrome, and had mx with snb. I was told I would still need rads. Ran through all my medical conditions with oncologist and mentioned Sjogren’s (also have RA) but nothing was said, so thank you for bringing this to my attention. I am starting chemo soon, so have a few months before rads start, but I must remember to bring the subject up when the time comes. I also have psoraisis.
Hi Janet,
i don’t have Sjogren’s either, but I did have radiotherapy after my first surgery in 2007 after which I had a very dry mouth for several months. My dentist gave me artificial saliva, which helped, and eventually it went away.
I really sympathise with you having to make this decision , it’s not easy even when there is only one condition to consider!
I hope someone posts with more relevant experience, but I think this is quite a rare disease isn’t it?
Anyway I wish you well whatever you decide.
Jojo
Hi Janet,
I understand what you mean about waiting …I decided that as you can only have Rads once I would wait and see what happened to me. Are you a borderline case ? What statistics can the Onc give you and % rates of reoccurence ?
It is so very difficult , but once I had made the decision I was very happy and never looked back. I take Tamoxifen now so hopefully that is killing any stray Cancer cells. Take good care of yourself Tracy xxx
Hi Tracy, thank you so much for getting back.
Not too sure about borderline as have (had) grade 2 cancer. The Onc said I have a 20% chance of recurrence with a 1 in 4 chance of metastic disease (5%?). I think he means within the next 5 years, but didn’t say so.
A 80% chance of non-recurrence looks like good odds to me. This should improve by taking the Letrozole. Of course, as the breast care nurse keeps pointing out, there is no way of knowing whether I am one of the lucky ones with non-recurrence.
The worst case I can think of is that I do the rads, suffer serious painful long term side effects, I get metastatic cancer and because I have already had rads, assuming same breast, cannot do it again.
Repeating the surgery if needed doesn’t bother me that much.
I have asked for another chat with oncologist, but so far nothing.
I am in danger of leaving it too late to have radiotherapy if I dither about much longer.
All the best janet x
Hi Everyone,
I am in a similar position to Janet in that I have a decision to make too. I have DCIS. WLE results show clear margins. I don’t know the grade of the DCIS but the surgeon was so positive about everything that I think it must be very low. He confirmed that it was a pre-cancerous condition. However, he proposed radiotherapy but left whether or not to have this up to me. I was thinking no until he said that if not, he thought tamoxifen would be prescribed. I definitely don’t want a recurrence of the menopause for 5 years — at least radiotherapy is a much briefer period of problems, from what I’ve read, than Tamoxifen. I’ve been referred to a radiologist to discuss radiotherapy further. Really don’t know what to do. I’ll kick myself if DCS returns but I’ll also kick myself if I get bad side effects from radiotherapy. It’s causing me a lot of anxiety at the moment — how on earth can I make the best decision? It seems that even the medical profession is at odds about whether radiotherapy is really necessary or not. The NICE guidelines suggest that it should be offered after WLE, whether margins are clear or otherwise but there’s a lot of stuff from the medical profession about possible over-treatment of DCIS. Oh dear! I’d be grateful for any further thoughts or experiences that any of you have to offer.
Hi Janet
Sorry to hear of your predicament. Bad enough have BC without having to worry about Sjogren’s as well. I had a 2cm tumour in 2011, grade 2, ER+, lumpectomy and SNB, then cavity shave to clear out some stubborn little buggers. Hadn’t spread so no chemo Huzzah! 15 sessions of radio. The only reason I commented was your comment about all the radio stories being so grim.
For me it was a complete doddle. Everyone said I’d be completely floored, not able to get out of bed, etc. Apart from 1 day when I felt a bit tired, I can honestly say it really didn’t affect me at all, at the time. My ribs ache quite often now, but I put that down to stretching a bit too much at yoga, cycling, and good ole arimidex/anastrazole. Both my surgeon and onco blame it on that. All I’m saying is radio isn’t necessarily as horrible as it’s usually portrayed.
By the way, don’t know if it’s relevant, but I’m 61, ie no spring chicken!
Good luck with your decision.
All the best, Monica
Thank you for all your kind thoughts. I decided not to go ahead with the radiotherapy in the end as have a hard enough time coping with arthritis and inflammation in my affected hand and arm from the Sjogren’s as it is. I couldn’t face adding possible lymphoedema and fribrosis to the mix. Hopefully, the Letrozole will keep recurrence at bay.
My gynaecologist has suggested ovary removal as well.
Just as well I am 65!
love Janet
Janet,
My tumour was Grade 3, 3cm in size. Had three nodes removed but only one affected. I had mx, but was still told I would need rads. As I am having chemo, and will be having Anastrazole for five years, I’m thinking that I don’t want rads. Along with the RA and Sjogren’s, I also have a lung disease and as mx was on left side, have heard that rads MIGHT leave me with heart disease later. I’m 62. Your info has helped me decide this, but I still have to tell the oncologist and radiographer. Good luck.
poemsgalore xx
My sister in law has recently finished three weeks of rads after her lumpectomy and chemo (FEC-t).
She swanned though radiation therapy completely, with no side effects other than mild redness, and actually drove herself 35 miles each way for treatment with no problem at all.
She as actually worked all the way through her treatment, all but a short post-op period, and a few days off after each chemo treatment!
I just wanted to say, radiation is not always a horror story. I’m sure the main people who post online about it are mainly the ones that have problems to talk about!!