May 15, 2017 06:46PM balance wrote:
Teachermom46 I sent you a private message.
All Topics → Forum: Breast Cancer with Another Diagnosis or Comorbidity → Topic: BC & Autoimmune Diseases: How many? What does the research say?
Posted on: Sep 20, 2015 12:57AM
A 7-year BC survivor, I've developed an autoimmune disease that so far has not been clearly diagnosed: different docs say different things: Rheumatic arthritis; psoriatric arthritis, testing positive for lupus without the typical symptoms ... My symptoms are a progressive eczema on my hands: skin thickening, itchy then peeling. Swollen & red knuckles, intermittently similar symptoms on my other joints.
My doctors are mostly useless - thus far. Onc / BS not interested: see someone else: PCP or dermatologist or rheumatologist or ...
PCP is helpless and big eyed: see dermatologist.
Dermatologist has now for 2 years tried every cortisone ointment to no avail and has no other suggestions.
My suggestion that this is systemic and perhaps related to the BC, and the two skin cancers (SCC & melanoma) I developed since then is pooh-pooed. Each is an isolated incidence they say.
I don't believe it.
4 questions (perhaps we can have a survey of sorts):
1. How many of you do have both: BC and an autoimmune disease? What kind of autoimmune disease? Which came first BC or AD?
2. Do you know of any good research on the topic?
3. What steps or tests to take?
4. Do you have a recommendation for a good doctor in Southern California to address this issue?
Posts 61 - 90 (166 total)
May 15, 2017 06:46PM balance wrote:
Teachermom46 I sent you a private message.
May 21, 2017 09:10AM dsteaparty wrote:
I was diagnosed with an autoimmune reaction in 2015 and have been taking plaqunil since then. Breast-cancer was diagnosed in February of this year but was supposed to be 6-8 years old. Lobular.
May 21, 2017 09:15PM - edited May 21, 2017 09:16PM by susie_2017
I was searching for a discussion page that talked about celiac and breast cancer, because I have both!! I wonder about the connection. 2012-celiac but im sure I had it all of my life. 2017-breast cancer
Jun 15, 2017 02:24AM Basilbee wrote:
Hi! Newbie here looking for info about managing treatments for both auto-immune diseases and BC. For years, I went through flares of exhaustion and pain in my joints. Multiple drs and multiple diagnoses that never seemed to fit. Finally found a rheumy that narrowed down to RA and/or Sjogrens. Began plaquenil and became gluten-free about a year before BC diagnosis. Was really beginning to feel myself again. However, with the BC diagnosis/mastectomy, highly recommended to stop the plaquenil, so I did. Pain has returned but not at the level as before. I think the gluten-free life change has Helped:) I find out Tuesday whether I will have chemo based on my onctype test. My onc says I can take plaquenil but my breast surgeon whom I trust a lot, says no. Has anyone taken plaquenil during or after chemo? Would like to handle symptoms holistically, but have watched a friend's RA progress horribly without immun-suppressant meds. Curious if anyone else is dealing with this
Jun 15, 2017 07:55AM dtad wrote:
Hi there. I also have multiple autoimmune disease. The worst being a severe systemic peripheral neuropathy tat causes generalized pain in entire body. I also have Celiac so I'm gluten free. Others include Hashimotos, endometriosis and interstitial cystitis. Please feel free to PM me if you want to talk more. My medical issues before my BC diagnosis has definitely affected my decisions about treatment. Good luck to all navigating this disease...
Jun 21, 2017 12:15AM dsteaparty wrote:
basil bee - I am also on plaqunil for RA symptoms. My oncologist said it was best to manage my RA joint pain because my treatment was only going to make it worse. I am currently taking femara and Lupron injections and I am also gluten-free and dairy free. I feel OK most of the time. I have adjusted to most of the side effects. And for now the exercise and diet changes have really helped to moderate my pain. Oh wait I forgot, Cymbalta I am also on Cymbalta to help with pain and depression. It seems to be a cocktail that is working for me. I am still watching this page to see if anyone comes up with a connection between with cancer and autoimmune.
Jun 30, 2017 11:24PM robinblessed54 wrote:
Hi dtad, I have Hashimotos too. It was diagnosed about 15 years ago. I just found out I have Selective Immunoglobulin A Deficiency while testing for Celiac. No Celiac, but now have this. I have chronic constipation and the GI was testing for any and all causes. I also have fatty changes in liver and Spondylolisthesis. (Say that fast 3 times!!) ILC in 2014. Wondering if autoimmune disorders make us susceptible to BC?
Thanks for any input.
Jul 1, 2017 12:48AM ready2bedone wrote:
Very interesting thread. I was diagnosed with sarcoidosis about 5 years ago. It's an immune disorder and does have a higher risk of lung cancer and lymphoma but I have no idea if it raises the risk of breast cancer. Anyone else here with sarcoidosis?
Jul 1, 2017 01:03AM - edited Jul 1, 2017 01:04AM by marijen
yes I think there is a correlation between bc and the immune system. What you have discovered is fascinating. I looked it up and there is a free 276 book to download on the immune system.
Jul 2, 2017 10:32PM robinblessed54 wrote:
Maryjen, excellent website! Thank you so much. I was able to go to the pages concerning IGA Deficiency and was very informative.
Jul 2, 2017 11:01PM BellasMomToo wrote:
In 1990 I was diagnosed with a hyperactive thyroid and Grave's Disease and Hashimoto's Disease. (My thyroid was knocked out with Radioactive Iodine.) One of my Mom's sisters had BC. She was diagnosed in 1988 (at age 48 and is still cancer free). I don't know her well, but I do know that when she was younger she was dx'd with a thyroid disorder.
My mother had three sisters and there are only three daughters among them. My aunt and I are the only two that have had thyroid disorders and BC. As far as I know, no one else has an autoimmune disease. And I'm very sure that no one else has had BC. (On my Dad's side, no autoimmune diseases or BC.)
Makes me wonder....
Jul 3, 2017 02:08AM - edited Jul 5, 2017 01:57AM by marijen
J Rheumatol. 2007 Nov;34(11):2259-63. Epub 2007 Oct 15.Joint pain with aromatase inhibitors: abnormal frequency of Sjögren's syndrome. Author information Abstract OBJECTIVE:
Since the results of the ATAC study, women who have undergone surgery for breast cancer and who require adjuvant hormone therapy are often treated with aromatase inhibitors. With these treatments, joint pain is frequent (30% to 40%) and quite often disabling (5% to 10%). Our objective was to investigate the origin of the pain induced by the anti-aromatases.METHODS:
Twenty-four women of mean age 59 years with joint pain of > 5/10 on a visual analog scale underwent a rheumatological consultation and systematic laboratory tests.RESULTS:
In 5 patients, pain was considered to have a well defined cause: osteoarthritis, shoulder tendinitis, or paraneoplastic aponeurositis. The other 19 patients had inflammatory pain of the fingers, wrists, shoulders, forefeet, ankles, or knees, with slight synovial thickening of the PIP and MCP joints. Two had an inflammatory syndrome on laboratory tests. Nine of these patients had antinuclear antibodies (ANA > 1/160 on HEp-2 cells) and 4 had rheumatoid factors (> 20 U). Ten patients had sicca syndrome of the eyes or mouth, 7 had probable Sjögren's syndrome according to the San Diego criteria, and one had definite Sjögren's syndrome. One had rheumatoid arthritis, one had Hashimoto thyroiditis, and 2 had positive hepatitis C serology.CONCLUSION:
Is the almost total estrogen depletion induced by aromatase inhibitors conducive to the development of sicca syndromes with ANA? Our results should be considered in relation to the Sjögren-like syndromes occurring in aromatase knock-out mice as recently reported.
Jul 7, 2017 04:18PM sarahrae wrote:
thanks for posting this study, super timely as I was just having this very thought. I have been having significant pain in my feet, shins and hands/wrists/elbows for about 2 months, at times its so bad that I can't make it to work. After changing my AI prescription from arimidex to letrozole and not seeing a change, they have told me that my pain 'is not related to my BC diagnosis' and that I'm on my own.
I am 43, have been getting gosrelin shots every month and taking an AI daily since 10/16. Also did one round of TC chemo and 33 rounds of radiation.
I was handling life and my semi physical full time job fairly well until, two months ago.... boom, pain. Pain that I could not get rid of without heavy pain pills.
Has anyone out there experienced something like this and stopped treatment to see if the symptoms abate? I realize its unlikely, but worth asking. I stay up on the alt. med and complimentary med forums as well.
I am assuming that I will eventually be diagnosed with some kind of myalgia or other autoimmune sitch if things continue unchanged.
I am pretty down and nervous. thanks for any feedback.
Jul 7, 2017 04:45PM - edited Jul 8, 2017 11:41AM by mybee333
Sarah Rae - Prior to my BC diagnosis I had already previously been treated for Hashimoto's with Synthroid, had a hysterectomy and been diagnosed with fibromyalgia which was VERY mild and manageable with exercise and diet. After my mastectomy I was prescribed an AI and tried every single one but was almost unable to walk due to the pain in my feet, ankles and other joints. I then took tamoxifen. I was on anti-hormonals for a total of three years and then stopped. I was doing pretty well despite having undergone multiple surgeries before using the anti-hormonals. But the medications flared my fibromyalgia and I have not returned to my previous level of health and functioning. I struggle with pain that now seems to be progressive. I have not taken an AI/Tamoxifen for two years. At that time I saw my oncologist for the last timeand expressed to her how much pain I was in and that I was unable to exercise or really be at all active without using Norco every day and she said "do what you have to do". I made a decision to discontinue the medications knowing that I'd had the hysterectomy and that it would help. I'm now having difficulty with arthritis and other things that I guess my grandmother had but neither of my parents did. I'm in a lot of pain. I'm also having issues with dry eyes, almost constant vaginal infections/dryness, UTIs etc.
I'm very much hoping things are different for you. Without a fibromyalgia diagnosis perhaps it will be. I looked into it before I stopped taking the medications – there's a very high percentage of women that do not make it through the five years let alone the now recommended ten due to pain and other concerns.
Jul 7, 2017 04:47PM marijen wrote:
You are welcome sarahrae. I was interested in the article because the joints and eyes are related (collagen?). Anyways, you are 43, and your body is cutting out more estrogen than an older woman. It's not surprising to me that some of us can take it and some of us can't. I didn't get a boom, do have joint pain and eye troubles. Hypothyroid - immune system and thyroid nodules, allergies. Just too sensitive I guess : ) We are all the same and yet we are all different. My feet have begun to hurt. Actually I reported it a year ago, but now they hurt more. Maybe a comfortable pair of shoes would help. Good Feet is out - way way too expensive. I tried another arch support but it just made my heal hurt more, although it might have helped my hip pain. All these little things are making me nuts these days.
You can take the study to your doctor? More at Femara. Femara and vision problems, Ai and blurry vision. And several sites questioning whether to stay on the AI or not. Let us know how you are doing.
Jul 8, 2017 08:14AM dtad wrote:
mybee333...so sorry you are suffering. I have multiple autoimmune diseases. The worst being peripheral neuropathy. It was the main reason I refused anti hormone therapy from the start. Its been 2 years since diagnosis and so far so good! Good luck to all navigating this complicated disease.
Jul 8, 2017 12:04PM mybee333 wrote:
Thank you for your concern. It is appreciated :-) I'm sorry that you are struggling with multiple auto-immune disorders. I wish it didn't have to be this way for so many of us. My dream is that there be centers established for individuals like us where doctors work with these disorders as a whole, sort of a one-stop shopping for the patient, as opposed to having to go from specialist to specialist in an uncoordinated fashion. I feel sometimes as if in many ways I'm spearheading my own treatment through online reading, trying to coordinate it all on my own, and zigging-zagging from provider to provider.
I'm glad it has worked well for you to forgo the anti-hormonals. It looks like you have made a decision that was right for you. There is certainly a danger of complicating medical conditions with the use of these medications. I really struggled with what to do myself at the time; the decision to choose to be ultimately non-compliant with treatment was not an easy one. Recently my ob-gyn has said he will not treat my vaginal atrophy with localized estrogen replacement without consent of my oncologist, (I'm 59 but struggle with issues usually confronted by women somewhat older, it seems to me). I have decided to try some self-treatments rather than deal with her and the lecture, cowardly I know, but perhaps better to be conservative anyway. So far so good.
I was not aware peripheral neuropathy can be an auto-immune disorder. These posts and comments are so informative. I wish they'd find out why some of us are stricken with such a constellation of syndromes.
Jul 8, 2017 03:00PM sarahrae wrote:
Thanks for the recent posts, It feels good to be 'seen' in this way and know there are folks out there that are so informed, understanding and brave.
I am also very frustrated with the zig and the zag as I am between GP's currently, why didn't my onc simply refer me to a trusted rheumatologist that works with BC or other cancer patients. How easy would that be???
Not that I necessarily want to travel down the long road to a AI diagnosis and treatment.
Thinking about going off the letrozole for a month to monitor pain(while continuing my monthly Goserlin injection), my hope obviously being that after I stop treatment all together that I am not left with debilitating pain.
not sure if it will be even near conclusive if I maintain the monthly injections, but baby steps maybe?? if so, I will start back up with DIM, yoga/chi gong, anti-inflammatory diet. continue omegas, turmeric, proteolytic enzymes, quercetin and bromelain.
another thumbs up for 'constellation of symptoms'
hugs and blessings!
Jul 8, 2017 10:49PM robinblessed54 wrote:
mybee333, none of my doctors would touch the use of localized estrogen on me either! But for the atrophy and dryness, especially during sex, thePA in gyn department recommended Aloe Cadabra. It saved my life and marriage! It is wonderful. I apply a pea sized amount everyday after my shower in the vagina. It changes the landscape of that area completely. I also use as personal lube during sex. It is the only one that doesn't sting. It's 95% aloe vera. I am 63 and am on Femara.
I have Hashimotos and just diagnosed with Immunoglobulin A Deficiency.
Hope this helps,
Jul 9, 2017 12:48AM marijen wrote:
Robin, looked this up...
Robin, when you were diagnosed with Immunogobulin A Deficiency did they explain it to you and tell you what to expect? I just figured out I have Hashimotos, as I always thought of it as hypothyroidism.
Jul 9, 2017 01:34AM mybee333 wrote:
Robin - Thank you so much! I will definitely try that- I see that it is easily available through Amazon. Unfortunately I don't have a partner but it's the monthly infections, irritation etc that s a problem for me and I think it's due to dryness. I've been trying a moisturizer but I like the natural composition of this one better so thank you!
Jul 9, 2017 07:48PM robinblessed54 wrote:
Marijen,I just got diagnosed a week ago so I haven't seen my oncologist until August 24th. I have researched a lot about it. They were looking for Celiac and this showed up. I know they usually don't find it unless they are looking for something else. No celiac than goodness. Hashiotos is hypothyroidism, but when the immune system starts attacking your thyroid it is relentless to kill it off. Mine is completly gone and I take Synthroid 137 micro grams per day. So now i have another autoimmune disease which is very common. I will look that link up. You can never have enough information when it comes to your health. Thanks, Robin
Jul 24, 2017 04:45PM robinblessed54 wrote:
marijen, boy, isn't that the truth!! There are always new aches and pains. I will be interested to see what the MO says on August 24th. I have read quite a bit about this and there is immunoglobulin injections, but not sure if they do that much. Funny how it says you are prone to infections. The only problem I have with that has been cellulitis, twice in the same arm 2 weeks before BMX and then a couple of years ago. I have been plagued with UTI's most of my adult life, but have that under control for years. So it is kind of weird. I just think that possibly the Femara has caused a lot of these things. The other two AI's gave me arthritis, trigger finger and now Spondylolethisis. So like a lot of us have found out, cancer is the gift that keeps on giving.
I will update after my appointment.
Jul 25, 2017 01:36PM jaycee49 wrote:
I am new to this thread. I was dx with MS in 1991. I do ok with that (you don't have time to read all about that) and then dx with BC in 2014. By 2016, I was stage IV. I have always had issues with UTIs, v dryness, v atrophy, and (of course) yeast from all the antibiotics. Really circular and frustrating. Hard on me and DH. We haven't had what DH calls "regular" sex (with penetration) in many years. I was digging around looking for I don't know what and found Robin's and mybee's posts. I already have some Aloe Cadabra in my Amazon shopping cart. I'll probably pull the trigger soon. This would be a HUGE thing for us. I like that it seems to be thick. I discovered Luvena a few years ago and it is very good but very thin. When you get up to go to the bathroom at night (which I do often), it runs out. It is very expensive and that is depressing, to feel it slowly run into the toilet. I hope this stuff will help. Thanks for the idea.