BC & Autoimmune Diseases: How many? What does the research say?
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?
Comments
-
Coeliac disease is my auto immune condition and came before the breast cancer dx. Coeliac women are less likely to get breast cancer than the general population..... apparently.
http://www.cancerresearchuk.org/about-cancer/find-...
Southern California, wow!, don't know any good docs but could come out and help you look!! - I am from the UK.
0 -
I have Hashimoto's disease (causes an underactive thyroid). I was diagnosed with this about 3 1/2 years prior to BC diagnosis, but lord knows how long my thyroid had been sluggish. Of course, they told me my BC took years to grow large enough to be seen on a mammogram, so it is anyone's guess which one actually started first.
My surgeon said it was "very interesting" that I had Hashimoto's also and he seemed to believe there is a connection between autoimmune diseases (I also have pernicious anemia but was diagnosed with that years and years ago) and BC. My endocrinologist found the BC diagnosis interesting only because of worries about what RADS might do to my thyroid. Few doctors seem to be putting together a connection between BC and autoimmune diseases, but I do believe the connection is there.
0 -
I have psoaritic arthritis (PsA), I would say a moderate case (17 active joints), fairly extreme fatigue, it also affects my eyes. I had undiagnosed/treated psoriasis for about 5 years.
I was diagnosed with minor inflammatory bowel disease (colitis) ~ 10 years ago
I have had both basal and squamous cell carcinoma (one of each) in the past 5 years
My PsA was diagnosed almost 1 year to the day after my DCIS.
I think the literature pretty strongly suggests that there is a link to high levels of inflammation and cancer (and other diseases as well).
If you have an autoimmune disease then you should see a rheumatologist - if you have ezema, then you should ask your dermatologist if they can suggest one? (I am not sure that ezema is an autoimmune disease specifically, but maybe it is misdiagnosed psoarisis?)
whoops, edited: tests they will give you if they suspect the autoimmune joint diseases
1. blood tests: HLA-B27 antibodies, anti-CCP antibodies, CRP/ESR to test for inflammation
2. xrays: some of the smaller joints in your hand/wrist so they can monitor progression of the joint disease - or x-ray of the SI joint to see if there is any fusion
3. sometimes if there is obvious swelling around a joint they will test of the synovial fluid
if they suspect other autoimmune diseases that affect specific organs like thyroid, skin, or colon they will either do blood tests to test for thyroid function, biopsies for skin (unless it is obvious by looking at it), or colonoscopy with biopsies (how they diagnosed my colitis).
Good luck.
0 -
I had a very high ANA and complement levels together with tendonitis and swollen joints which indicated PsA and Lupus type symptoms diagnosed after a lot of going back and forth to the doctors. First the symptoms were attributed post chemo, then tamoxifen then menopause. I paid privately to see a rheumatologist (difficult to get referrals in the UK) who did the tests. He insists there are no links between autoimmune and bc. I take Plaquenil and methotrexate, been told biologics can't be given due to the fact I had chemo.
0 -
I'm waiting on results for a lupus panel. Positive ANA and high sed rate (inflammation marker) results after sudden decrease in kidney's filtration rate has my PCP suspecting lupus. <sigh>
0 -
I've had rheumatoid arthritis for 20 years and also sjogren's syndrome. As mentioned above my doctors tested ANA, sed rate, and antibodies and other things I can't remember. Someone else mentioned above a rheumatologist. I think seeing one is a good suggestion, since they deal with alot of autoimmune diseases.
Kendra
0 -
I had a positive ANA test in July and have an appt with a rheumatologist mid-October. At this point the only BC diagnosis (is it really even a BC diagnosis?) is ADH, ALH, and an atypical papilloma. I am scheduled for another biopsy (this time excisional - already had a stereotactic needle core biopsy on the left and an MRI-guided needle core biopsy of two spots on the right). The bleeding of my right nipple started at roughly the same time as my ANA results. My liver numbers were also sky high.
I don't know if any of this is related or not.
0 -
I have a long list of autoimmune diseases pre breast cancer dx. I have Hashimotos, endometriosis, interstitial cystitis, Celiac disease, and the most debilitating one is CIDP which stands for chronic inflammatory demyelinating polyneuropathy. Honestly while trying to live with all of this I never thought I could get breast cancer. Boy how stupid! Now Im starting to see there is indeed a connection probably due to the inflammatory factor. Good luck to all......
0 -
I also have Lupus. I was diagnosed two years after the birth of my daughter - she's now 19. I think I had it undiagnosed for many years before that, but have never had organ involvement, so it was under the radar.
I don't know of research about BC and autoimmune other than having an autoimmune disease increases risk for BC.
Your story is typical - many different issues that seem unrelated, several docs with slightly differing opinions, no clear diagnosis, etc. I'm not surprised the PCP is basically helpless. My suggestion would be to go to a rheumatologist at a university teaching hospital (if you can) but a rheumatologist nonetheless. S/he will be able to sort through all the symptoms and put the pieces together for you through testing. The Lupus Foundation may be a good place to start in your search for a doc: http://www.lupus.org/
Please feel free to PM me if you would like.
ETA: here's the find a doc resource from American College of Rheumatology: http://www.rheumatology.org/Directories/Find-a-Rheumatologist
0 -
Hi All,
I feel like there is a very real connection between autoimmune disease and BC. I was diagnosed with Graves disease (overactive thyroid) 13 years before my BC diagnosis. Surgical removal of thyroid and I have been on synthroid for 15 years. I was diagnosed with colitis one year before BC. I also have arthritis. Some days I feel like I am falling apart ! Just got to laugh to get through some days.
0 -
Thank you all for your responses.
I am taking note of all of them. It helps to know the tests that you've had. I had some of those but apparently could have a more comprehensive set in order to reign in what I have. I have seen both rheumatologist and dermatologist regularly. They test and prescribe. Without ever knowing what I have. Traipsing around in the dark and trying out mediations to reign in what I might have in instead of figuring that out first.
I don't want to be treated with heavy duty drugs for random diagnostic guesses. I need a doc who knows her/his stuff and is a good diagnostician. If any of you have any suggestions for one in Southern California please let me know.
Please keep your responses regarding your own bc & autoimmune link coming. It helps me to figure out things; research links & tests; and it will help others too.
0 -
Ailenroc, I'm sorry you're having so much trouble. Unfortunately, autoimmune disorders can be VERY difficult to track down. In fact, even though I have many symptoms of Lupus, my doctor will not give me that "label". He calls what I have "Undifferentiated Connective Tissue Disease". Personally, I don't care what it's called as long as I get help for my symptoms - which I do through Plaquenil. It seems to me that far too many doctors are willing to slap a label on someone just to make themselves (and sometimes their patients) feel better, like they know what's going on. When I first started taking Plaquenil a colleague of mine said that she had Lupus and also takes it. I asked her what her symptoms were. She said that years ago her elbow hurt and they did the ANA test and she's been labeled with Lupus and taking Plaquenil ever since, no questions asked! Shocking to me, as the ANA test is NOT a "Lupus test". Up to 15% of healthy people will have a positive ANA test, and ANAs can show up in other autoimmune diseases.
0 -
I have had a diagnosis of lupus for 14 years. I believe it was triggered by Lyme. I had an extremely high ANA (not diagnostic) and a skin biopsy (said either lupus or dermatomyositis but not quite exactly either).
I think, for dermatological symptoms, that a skin biopsy can be helpful.
I don't really care about labels. I just know my body attacks itself and my immune system "has gone awry" (as one MD put it). I react to lots of foods and meds too, so my immune system is too strong (not too weak) and very misguided. It makes perfect sense to me that this could be related to cancer, since an effective immune system is needed to fight it off.
One interesting thing: I have been diagnosed via blood tests with paraneoplastic syndrome. This is an autoimmune disorder in the brain, triggered by the immune system revving to fight the cancer. My main symptoms are unusual eye movements, which make it hard to read sometimes, some muscle twitches, and fatigue. Only 1% of cancer patients get this. MD's don't know if it gets better or not: my impression is that it is improving now that surgeries are healed.
0 -
Hi Ailenroc,
I'm not sure if you're still looking for a good doctor in Southern California, but my rheumatologist is Dr. Shuntaro Shinada at USC. He's excellent... and so patient. I suddenly, mysteriously and frustratingly developed a multitude of symptoms the year after my BC diagnosis. I was tested for two years for brain/spine mets, MS, neurological viruses and I don't know what else. Diagnosis evaded my docs until I finally landed at Dr. Shinada's office and was tested for lupus. If you don't mind driving from Irvine, it would be worth a try. He's on the Health and Sciences campus; let me know if you'd like more information.
I hope you have some answers soon, and mostly, I pray you begin feeling better soon. Take care
0 -
i just had bloodwork that shows a high RA factor of 28, but normal sed rates. I've had ongoing pain in my left arm for three years which had been attributed to Lymphedema (I lost 27nodes) but i now wonder if it is actually RA, and I've always had weird rashes on my elbows and under my right arm, (which had been diagnosed as granuloma annulare). My left foot and big toe have been bothering me for a while. An X-ray showed a bone spur which needs to be addressed by a Podiatrist. Next on the list is a "dangerously high" cholesterol level.
What the heck! How can all of this be?? I was super healthy, then I turned 55 and bam!
Any info or comments would be greatly appreciated. The way I see it, I'm a walking time bomb! To say that these symptoms are not related seems a bit naive. How can they not be?
0 -
I have been wondering about autoimmune diesases and bc for a while. I have had a couple of minor but odd things during my life, alopecia twice when younger, also little white spots with no pigment on my otherwise freckly fair skin which a number of doctors have commented on over the years without me saying anything. I recently asked a dermatologist who thought it was vitiligo. Both these can be autoimmune I believe. Also my mother died as a result of pure red cell aplasia which had no obvious cause like a tumor. I understand that it is a rare and autoimmune disease too. Certainly food for thought.
0 -
i was diagnosed with RA in 2006. Dx with ILC Oct 2015.
0 -
Thanks for starting this topic. I've been asking similar questions, but from a different angle.
How does estrogen affect the immune system within the realm of breast cancer?
This may be a tremendously important question to answer as the Oncology industry is shifting towards Immunotherapies and ER+ breast cancer has had a bad reputation of being "immunologically silent" (i.e. immune system doesn't see ER+ BC as foreign). That's probably why many early stage Immunotherapy clinical trials are focused on the triple negative (TNBC) population (as well as HER2+ patients).A couple months back, I did some quick boolean searches on google for estrogen and the immune system.
I wanted to find the researchers who are looking to exploit Immunotherapy for hormone positive BC. Due to limited time, I didn't get far. However, I found studies done by Dr. Wael Jarjour who researches Immune system genes activated by estrogen causing autoimmune disorders like Lupus (SLE). That 2014 research is here: "Immune system genes activated by estrogen may hold clues to Lupus origin"His lab website, here, essentially wrote:
"In investigating the role of estrogen receptors and estrogen in Systemic Lupus Erythematosus (SLE) and other autoimmune diseases, Dr. Jarjour of Ohio State demonstrated that estrogen up-regulates numerous genes that regulate the immune response. In 2013 publications, the team identified two novel targets of estrogen that are significantly up-regulated in SLE patients and play a critical role in regulating inflammation, specifically ZAS3 and TLR8. The research team is currently exploring functional consequences of this up-regulation".I know this is not breast cancer related, but think about the statement: "estrogen up-regulates numerous genes that regulate the immune response."
Can this knowledge be leveraged and applied to breast cancer?
I may be grasping at straws, but I think regardless of steroidal status (ER or PR), the immune system has a bigger role in being able to fight breast cancer, despite those that still feel ER+ BC is not very immunogenic.
Where are the Labs conducting research on the connection between estrogen, breast cancer and the immune system?
To quote the The Emperor of All Maladies, "if cancer exploits the power of evolution to survive, perhaps only a commensurate weapon, equally adaptable, also perfected over millions of years, can overcome it. That weapon many scientists believe is the human immune system".
Immunotherapy drugs are the future for cancer therapy.For those interested, here's the full article from Ohio-based Dr. Wael Jarjour:
Immune system genes activated by estrogen may hold clues to Lupus originDate: April 16, 2014
Source: Ohio State University Center for Clinical and Translational Science
Summary: Most autoimmune diseases disproportionately affect women, but scientists do not know why. Researchers say they've discovered a group of immune-regulating genes that increase activity in the presence of estrogen, which could help explain why women are better able to fight off infectious disease – and why they are more at risk for developing autoimmune diseases like lupus. The discovery also opens the door for new therapies that could help regulate estrogen's impact on these hormone-sensitive genes.Article:
It's a phenomenon scientists observe whether they look at mortality rates in the United States, where medical care is relatively good, or third world nations, where medical care is often scarce: women are less likely to die from infectious diseases than men.The lower death rate has been attributed to a beneficial, yet unexplained effect estrogen has on the immune system. However, some scientists also believe that estrogen may contribute to the development of autoimmune diseases, which overwhelmingly impact pre-menopausal women, causing debilitating and deadly symptoms.
"Estrogen appears to be a double-edged sword - on one side, protecting women from disease, on the other, potentially causing it," said Wael Jarjour, MD, director of The Ohio State University Wexner Medical Center's division of rheumatology and immunology. "However there isn't much research explaining how estrogen might have this duality, so it's a controversial theory."
Now, Jarjour and a team of immunology researchers at Ohio State and the University of Virginia (UVA) say they have some evidence to support that theory. They've discovered a group of immune regulating genes that become more active in the presence of estrogen, offering a clue to how the hormone's normally protective effects could go awry.
Jarjour and his team studied a family of immune response genes called toll-like receptors (TLRs), which are responsible for sending out chemical "danger signals" when a bacteria or virus is detected. These signals prompt a cascade of defenses designed to kill the pathogen; however, in a person with autoimmune disease, these inflammatory responses inexplicably turn against normal tissue. The team hypothesized that estrogen may stimulate TLR signaling, leading to a hyper-reactive immune state.
"When estrogen triggers these genes to become more active, the genes tell the immune system to get ready to fight," said Jarjour, whose lab is one of the few in the nation focusing on sex bias in auto-immune disease. "This 'standby' mode lowers the immune response threshold, which is helpful in fighting an infection, but could also set the stage for an autoimmune disease where the immune responses are out of control."
To test their theory, scientists triggered an immune response in cells from men and women with and without lupus -- an autoimmune disease that women are nine times more likely to get than men. Then, they added estrogen to see if gene activity changed, honing in on TLR8, an X chromosome-linked gene whose expression has already been implicated in the development of lupus.
The addition of estrogen boosted the level of immune response in all of the study samples, but the reactivity of cells from women was almost two times greater than that of cells from men.
"Clearly, estrogen regulates TLR8 and other TLRs in ways that change the threshold of an inflammatory response, and female cells are hard wired to be more sensitive to this change," said Nicholas Young, PhD, a molecular biologist with Ohio State's department of immunology who worked on the study.
Margaret Shupnik, PhD, a Professor of Medicine at UVA's School of Medicine who also worked with Jarjour's team says she hopes that the findings will prompt other researchers to develop novel therapies that regulate TLRs, and offer lupus patients the kind of treatment options that they currently don't have.
"There has been only one new lupus treatment introduced in the past 50 years, and our most powerful drugs shut down the immune system, causing difficult-to-manage side effects," noted Shupknik. "With evidence that TLR8 changes the way lupus patients respond to inflammation, therapies that regulate this protein might help prevent or treat this disease in ways that don't compromise the immune system."
The study on TLR8 was published in the March issue of Clinical Immunology. It is the second estrogen-regulated gene that Jarjour's team has discovered, and they are currently working on identifying several more. The researchers also plan on applying for a grant once they have compiled their findings on all genes in order to fully explore the estrogen-autoimmune disease connection.
"We have only just begun to appreciate the powerful and complex role estrogen plays in the immune system. More than 1,000 genes have estrogen receptor binding sites that control their expression, but less than one-tenth of those have been studied," noted Jarjour, who is also an associate professor of immunology at Ohio State's College of Medicine. "The overwhelming sex bias of autoimmune disease demands that the estrogen connection be studied more deeply."
Study enrollment of patients with and without lupus was supported by ResearchMatch, a service provided through the support of the Ohio State University Center for Clinical and Translational Science.
Systemic lupus erythematosus (SLE or lupus) is a chronic inflammatory autoimmune disease that impacts the entire body, but especially affects the skin, kidneys, lungs, blood, joints, brain and heart. Lupus is characterized by periods of activity (flares) and periods of remission. According to the Lupus Foundation of America, for most people with lupus, proper treatment can minimize symptoms, reduce inflammation and pain, and stop the development of serious organ damage. The disease can start at any age, but is most common in female minority populations, and 90 percent of people with lupus are women. It is estimated that 1.5 million people in the United States have lupus. The disease is more severe in children.
0 -
I had malignant melanoma, ulcerative colitis, and PCOS prior to my breast cancer diagnosis. I also have. Vey cystic thyroid and had the right half removed. interesting topic. I am unlike anybody you however in that oval ER negative but Her2 +.
0 -
Fascinating information JohnSmith.
It will take me a while to read through and absorb it all.
Thanks for posting all this info.
0 -
I had a very high ANA and SSA-RO test a year and a half ago, while on HRT. I saw a Rhematologist, but declined to use standard medications (true to form) such as Steriods or biologics, so there was no where to go. Then Big C 6 months later.I have early onset arthritis, and facing my 3rd joint replacement at 58 next week. Bone scan showed arthritis all over. I chose not to do chemo, as I have enough pain and quality vs. quantity of lifeis most important.
If stopping Estrogen will help in the long-run that would be interesting. I'm not sure the results suggest that. I fear what I'll be like at 70 if I keep going this way. I am a slightly overweight person from inactivity (recent gain of 15 lbs) who goes to the pool at least 5 days a week. I use a lot of alternative treatments to cope. Sounds like for many of you Cancer was the icing on a yucky cake too. How does that affect your tx decisions?
0 -
JohnSmith - it is interesting, but I am not sure of the point? That estrogens someone interact with immune response? My autoimmune diseases (psoriatic arthritis and ulcerative colitis) are *not* more common in women so - "The overwhelming sex bias of autoimmune disease demands that the estrogen connection be studied more deeply." - I am not sure this is a correct assertion that "all" autoimmune diseases are predominate in women?
0 -
I have Coeliac disease and apparently this is supposed to be a protective factor in women getting breast cancer... Huh? not for me!
0 -
wintersocks I have Celiac too!
0 -
This is a very interesting thread - I'm so glad I found it. I recently had a strange bout of tongue sores and weird tongue sensitivity. My ENT took a look and said I had burning tongue syndrome, but did a series of bloodwork to rule out other things. I was negative for RA and Sjogren's Syndrome as well as some other tests, but my ANA test was positive. She said I should do further testing for autoimmune disease and to follow up with my PCP. But when I asked my PCP, she totally poo-pooed it, saying that all the ANA test shows is that there is inflammation somewhere in the body. She claims that I would test positive if I had "stubbed my toe." Really??? I do have other symptoms, but since she wasn't willing to even ask, I fired her. I haven't told my MO about it yet because I assumed there was no connection to my being a bc survivor, but silly me - I should know better, right?? I'll be calling her next week to see what she advises for me. I'm just soooo sick and tired of feeling sick and tired!
0 -
BLind, I did read that mostly women are diagnosed with autoimmune diseases.
Edited to add that I just saw that you highlighted the word *all* sorry bout that
0 -
I was diagnosed with MS in 2007. I spent 2 mos. in the hospital for speech, physical and occupational therapy. I was unable to speak, walk or do much of anything; was like a stroke victim. Was in a wheelchair for 2 years and required a caregiver. Then, one day, I started to walk, speak and do almost anything before I got MS. My parents consider it a miracle, as doctors said I would never walk again. Well, they don't know everything :-)
Then, In March of this year, I was diagnosed with breast cancer. HER2 positive, grade 3. I am currently undergoing chemo, with 1 of 6 sessions complete. I will be having surgery after the chemo is done. Currently, my hair us falling out in clumps and I will be having my head shaved this weekend. I hate the chemo and getting nauseous.
Had 3 suicide attempts with one ending in the ICU in a coma. This all happened before I was diagnosed with MS or cancer. There must be a reason that I am still here. Am still trying to figure out what the reason is. I am much more forgiving and happy now and realize that life is great.
0 -
I have Celiac Disease too! Hmmm.....
0 -
bump
0 -
I also have celiac disease. I also have arthritis. A friend of mine is a physician and she says she sees stress cause autoimmune responses and she has seen people get cancer after uncontrolled autoimmune diseases. She says this is an area they are doing a lot of research
0
