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All TopicsForum: Breast Cancer with Another Diagnosis or Comorbidity → Topic: BC & Autoimmune Diseases: How many? What does the research say?

Topic: BC & Autoimmune Diseases: How many? What does the research say?

Forum: Breast Cancer with Another Diagnosis or Comorbidity — Meet others who have breast cancer but also have another health diagnosis/comorbidity such as diabetes, MS, bipolar disorder, HIV or AIDS, Parkinson's Disorder, schizophrenia, etc.

Posted on: Sep 20, 2015 02:27PM

ailenroc wrote:

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?

Oncotype score: 1; BRCA neg; bilat bc & bilat mx w recon; Dx 5/30/2008, IDC, <1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Jun 30, 2016 01:44AM ARCats wrote:

About twelve years ago I had an episode of Epstein Barr. I suffered from major fatigue to the point I was out of work for awhile. Until I read this blog I didn't connect it to BC. Reading about this there seems to be a connection but It's controversial, so I'm really not 100% sure, but there have been studies that links this autoimmune disease to BC. I also have a coworker which went through a BMX about ten years ago and she also suffered with Epstein Barr.

Dx 12/15/2014, DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 1/15/2015 Lumpectomy: Right Radiation Therapy 2/18/2015 Whole-breast: Breast Hormonal Therapy 4/10/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 30, 2016 07:27AM SPECTER55 wrote:

I have Celiac also. I just had BMX for extensive precancerous ADH. Ironically, the Celiac was diagnosed just days before my surgery. If there is a connection between autoimmune disorders and BC, I am glad I had the surgery. The peace of mind that I now have is worth all the pain I have gone through

Dx 4/22/2016, Left Surgery 5/26/2016 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/7/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 30, 2016 05:35PM steelrose wrote:

I've lived with stage iv bc for six and a half years. and was just diagnosed with CIDP. I do believe there's a connection. In my case I wonder if all the chemo's and anti-hormonals might have triggered my immune system to attack everything in sight. I just know that my body has been fighting for so long, it can't distinguish friends from enemies. Ugh!

Glad to have found this thread.Best to everyone...


Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jun 30, 2016 09:59PM Reckless wrote:

I have BC and lupus. I was diagnosed with lupus as a child, many years before BC, and it was in remission for the most time (including prior to BC diagnosis). I will appreciate links to a good research too, convinced that there is a connection

Dx 3/4/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 4/19/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/19/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/11/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 11/14/2017 Prophylactic ovary removal
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Jun 30, 2016 10:49PM goodprognosis wrote:

Hi All,

I realise I haven't added my list to the above.

Diagnosed with Oral Lichen Planus about 4 years before BC diagnoses in 2012. Also diagnosed 2 years ago with Raynauds Disease. Also have IBS for about 20 years.

That's 3 I know about???

Any connection? - I honestly don't know, but I am beginning to suspect one.


goodprognosis-- "only another winding will this stream make, then shall I come to you, a boundless drop to a boundless ocean." K Gibran Dx 8/22/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 9/24/2012 Lumpectomy: Right Surgery 9/25/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 10/11/2012 Lumpectomy: Left Radiation Therapy 12/19/2012 Breast, Lymph nodes Hormonal Therapy 1/1/2013
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Jul 28, 2016 05:40PM - edited Jul 30, 2016 10:28PM by mybee333

I was diagnosed with fibromyalgua which is not really an auto-immune disorder, but may be (?) 17 years ago. I managed it fairly well with diet and exercise until anti-hormonals. I believe my fibromyalgia was triggered by severe hypothyroidism which was ultimately diagnosed as Hashimoto's Disease. This came following the birth of my third son at age 40. I developed a lot of allergies I'd never had before, respiratory allergies to things like grasses, dogs, dust, pollen, etc. I also developed acid reflux during the pregnancy that never resolved and I've been taking medications for that ever since then. In my 20s I had interstitial cystitis. I currently have arthritis in both shoulders, both knees, I think my elbows. I hurt so much in my joints it's hard to know but the arthritis has been seen on x-rays. My thumbs hurt a lot lately; I think it's from using my phone too much as a computer. I had surgery on my right shoulder because the arthritis was so severe. Eight years ago I was diagnosed with cervical cancer and subsequently had a full hysterectomy which was the recommended treatment at that time ( but not anymore). It necessitated me going on estrogen replacement because it slammed me into a menopausal wall overnight. I tried various types of estrogen replacement until I was diagnosed three years later with breast cancer which was highly estrogen positive. Following multiple surgeries that ultimately led to a right Mx with reconstruction, I tried all the anti-hormonal's and ended up with about three years of total usage. I then stopped because I just could not take the pain anymore. The anti-hormonals put my fibromyalgia into flare and I thought that going off would help me to get back to a manageable state however I have remained in pain and fatigued. Three years ago I developed rosacea. Actually I had it I guess probably 15 years ago but it was pretty manageable. Now I have developed a multitude of allergies to chemicals. I have to be very careful with what I put on my face as it seems I have a reaction to everything either itchiness, stinging or burning. It makes me a little sad because playing with make-up was a simple pleasure for me. I develop rashes from sunshine which is actually photosensitivity from medication that I take for the rosacea (although this photosensitivity I've had in the past with other medications as well) which has gotten worse in the last several years; it has now progressed to ocular rosacea and my eyes frequently burn. I should probably go back to a doctor for interstitial cystitis again. It seems I'm always running to the bathroom and it interferes with sightseeing, going to the mall, etc. I'm the only one in my family who has all of these issues however my grandmother had vitiligo that was brought on by the sudden death of her husband at the age of 29. She lost pigment in her skin and developed a gray streak in the front. I was a very sensitive child who always had trouble sleeping. My skin was very sensitive then too and prone to rashes. My mother had to use only a certain detergent to launder my clothing. I had trouble sleeping as a girl and had hypoglycemia and very frequent headaches. I had some emotional trauma as a kid but had much more as an adult that I believe led to all these medical difficulties. There's no doubt in my mind that they're all related and auto-immune in nature. I'm 58 but I feel like I'm so much older than I wanted to feel at this age and than my peers. The fatigue in combination with the pain really slows me down as far as daily life, although I try to hide it. Due to the fibromyalgia I have quite a bit of post-mastectomy pain. I allow myself breaks and rest time. I make lists and try to accomplish something every day. And I need to work, for myself and because my kids are still financially dependent on me. Therefore I do but luckily have summer's off. I'm never as productive as I would like to be though. I try to sleep as much as I can and sometimes it's six hours but other times it's 10. I don't socialize much. I find activity tiring. I know people think I'm anti-social in nature, perhaps rude, but between the need to stay out of the sun, my fatigue and all these other issues, mostly the daily pain, I find I feel I don't connect with others; their lives are different. Everything got much much worse following the seven surgeries that I had related to breast cancer. If I would've had a mastectomy with reconstruction in one surgery instead of multiple lumpectomies and stages of reconstruction with surgeries I believe I would be in much better shape today. Actually, now that I think of it, I was doing OK until use of the anti-hormonals. I just haven't recovered from that. I find that no one really knows that I have these illnesses or has a conceptualization of the impact. My adult children do a little bit but they don't like to think of their mom this way so they're fairly silent. I feel badly because I'd like to be a better mom to them and still cook and be peppy and energetic the way I was when they were young. My struggles have interfered with my faith which I seem to have lost. And I know I'll probably never be involved with a man again because this is more than anyone could take and I just don't have energy to take care of anyone besides myself now anyway. I know this was long; but I saw the thread and I wanted to share. I hope it was okay. This has all got to be related somehow.

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Jul 29, 2016 06:28PM Heidihill wrote:

I'm reading a book on autoimmune diseases by Dr. Susan Blum, The Immune System Recovery Plan. I think there's some helpful advice in the book, but I'm only less than a quarter of the way through.

I have a history of lupus (SLE), Raynaud's and Hashimoto's, plus autoimmune disorders seem to run in the family. I am currently in remission from lupus and Hashimoto's, the latter through surgery, as well as from Stage IV BC (hi, Rose!) Actually, it was my experience in getting my lupus under control that brought me to the conviction that lifestyle changes were worth trying, even with stage IV, to strengthen my immune system. After my lupus diagnosis, my doctor advised plenty of rest/sleep, exercise, proper diet and not to scare myself reading medical journals. At that time there was no Internet (early 80s), so the last was easy to do. I played squash and volleyball several times a week, went to bed early, ate a lot of yoghurt, stopped eating hamburgers.

I do believe estrogen is two-edged for autoimmune diseases and cancer. I probably had too much estrogen: exercise and increased melatonin from sleeping reduced the estrogen in my system. At a point in my life when I was hardly getting exercise and sleep again, I was diagnosed with BC.

On the other hand too little estrogen could cause inflammation in tissues and that may make the environment for cancer growth more favorable for postmenopausal women as well as cause autoimmune disease. I guess a lot depends on what else is going on in someone's body.

Anyway, I thought it was interesting that Dr. Blum recommends as a first step, going gluten-free. Gluten causes inflammation even in non-celiac people. I will be trying this in preparation for the fall, when my joints start aching again.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 30, 2016 10:37PM - edited Jan 17, 2017 03:56PM by mybee333

I went gluten-free for a while and did not find a change with me. I do find however that white and processed carbohydrates can seem to make the pain worse. As I mentioned above I used to be able to control my fibro with diet. That was a zone-type diet that also helped with hypoglycemia in that you had to eat 30% protein at every meal. I have become a vegetarian now in order to try and eat more clean (It seemed like that helped in the beginning but I think actually it was the exercise that I started at the time. This was last summer and while I'm still housecleaning and gardening, etc. I don't think I'm getting the same level of aerobic exercise. I seem to get winded easily too). Anyway I'm trying to increase my protein intake to see if my pain will go down by adding in meat substitutes, more dairy in the form of yogurt and things like that. Considering joining a small gym that has a pool although I've heard the water is cold and so that might increase my pain. I tried all the medications that are recommended for fibromyalgia and none of them were particularly helpful although Cymbalta helped with depression, yet there were side effects. And coming off of it was extremely difficult and that scared me.

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Aug 3, 2016 07:08PM BellaTassie15 wrote:

I was diagnosed with Stage 4 bc de novo July 2015 and have just been diagnosed with Polymyalgia Rheumatica. I have been complaining about stiff and painful joints and muscles since Jan and was initially told they were side effects from Perjeta. As it worsened I was put on increasing dosages of a morphine patch with no relief. After being almost incapacitated with severe stiffness and pain last Fri my Onc finally considered other causes and PMR was confirmed by bloods and response to oral cortisone. 

I'm 51 and was put into menopause by chemo in Oct and was post menopausal by Feb. I will be on cortisone for life, which concerns me due to the many side effects, one of which is osteoporosis as I have bony metastases. I also wonder if bc treatment has contributed to my development of PMR.

Dx 7/2015, IBC, Left, Stage IIIC, ER+/PR+, HER2+ Dx 10/2015, IBC, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2+ Dx 8/2017, IBC, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2+ Surgery 2/7/2018 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 3/25/2018 Whole-breast: Lymph nodes, Chest wall Chemotherapy AC Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Aug 3, 2016 10:49PM dtad wrote:

Hi everyone. I have multiple autoimmune disease and obviously BC. I think the common denominator is inflammation and a poor immune system. My autoimmune issues have had a huge impact on my treatment decisions. QOL is the most important piece of this puzzle for me. Good luck to all....

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 9, 2016 09:40PM Kzena wrote:


I have Hashimoto's disease diagnosed after my pregnancy, age 43. Breast cancer diagnosed age 64

Dx 1/26/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/11/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/28/2016 Whole-breast: Breast
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Aug 9, 2016 10:01PM dtad wrote:

I also have Hashimotos. I was also diagnosed after my first pregnancy at 24. That was just the beginning of many other autoimmune issues :(

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 11, 2016 10:31AM steelrose wrote:

Thanks to Heidihill for the book tip (waving at you, Miss Heidi!)... I'll add it to my list. I had no idea you had that autoimmune history.

This is all new to me and it gets curiouser and curiouser. I've had every test in the book to rule out bc, the last one being yet another spinal tap. The first one showed my protein level to be 557mg (normal is between 12-60)! But the IVIG treatments I've had seem to have lowered it to 421. Still, an outrageous number. Does anyone else have CIDP? It all seems so mysterious.

I hope you all will continue this discussion, and share your experiences. I really do feel like the cure for bc is somehpw wrapped in this web.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Aug 11, 2016 10:41PM dtad wrote:

Yes I also have CIDP....

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 12, 2016 03:12AM steelrose wrote:

dtad, I sent you a private message.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Aug 14, 2016 06:14PM - edited Oct 3, 2016 05:13PM by LisbethS

This Post was deleted by LisbethS.
DX'd at 51, OncotypeDX 40, BRCA2+. Couldn't do this without the love of my DD 13, DS 11 & DH who keeps me sane through this insane journey. Dx 6/24/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 7/5/2016, IDC, Right, <1cm, Grade 3 Surgery 7/13/2016 Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy 9/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 12/8/2016 Prophylactic ovary removal Surgery 3/9/2017 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Hormonal Therapy 3/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 18, 2016 05:15AM Truffles1968 wrote:

I was diagnosed with celiac disease 2 years before BC diagnosis- and I think I have always had celiac (ear infections since birth- tubes in both ears until going GF, fertility issues, fatigue) and that the chronic inflammation prior to going GF contributed to my cancer. My daughter has a connective tissue disorder similar to Ehlers Danlos (which she was mistakenly diagnosed with at 4 months) and my son has celiac also. The period when my BC began to grow according to dr was after I had triplets (with a 1 year old at home) and a deployed Navy husband- I don't think I slept the 9 months he was gone. And I know I was not eating well, I was in survival mode.

Dx 10/13/2015, ILC, Right, 3cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
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Sep 8, 2016 08:55AM notdoneliving wrote:

I hope you're doing better since you started this thread. Look into Still's Disease. My sister has had rheumatoid arthritis since she was in jr. high. Then in her 40s, she started getting rashes and a low grade fever. After being admitted to the hospital and having a bunch of tests, her rheumatologist determined Still's. It's kind of in between RA and lupus.

Dx 8/11/2015, IDC: Mucinous, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 9/1/2015 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 8, 2016 09:04AM notdoneliving wrote:

I just found your thread because I am doing research around my Hashimoto's which I was diagnosed with last May. I had a lumpectomy Sept. 2015. I've been tired my entire adult life. There's no telling how long antibodies have been working on my thyroid. The only real issues I've had before the BC diagnosis have been a single seizure in the early 80s (I still have seizure activity in my brain) and essential tremor, which I was diagnosed with about 7 years ago. Now I'm thinking the ET is connected to the autoimmune issues.

The other night I learned of the mucosal immune system, which made a lightbulb go off in my head. My breast cancer was mucinous. I've also been learning about gut bacteria and leaky gut. My oncologist (who is also an immunologist...isn't that interesting?) said 70% of the immune system is in your gut.

When I first started having Hashimoto's symptoms, I was convinced it was the tamoxifen because of the timing. Which, of course, it wasn't. Apparently autoimmune diseases have triggers, so I thought it was the stress of the BC. Now I'm wondering if my immune system freaked out over not being able to get rid of the cancer and decided to attack my thyroid. Although the antibodies had to have been attacking my thyroid for a while for it to have gotten bad enough for symptoms.

I'm so confused. But determined to get to the bottom of this.

This article doesn't have the answers, but is quite interesting! http://healthpsychology.org/the-relationship-between-cancer-and-the-immune-system/

Dx 8/11/2015, IDC: Mucinous, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 9/1/2015 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 11, 2016 12:36AM adavis wrote:

HI everyone: I just joined the message boards so I could post on this thread. I have had a number of people ask me if my "issues" could be related to my breast cancer diagnosis and treatment and now I am really starting to wonder....is it the treatment or is it just me?

I've never written out my full history, but here I go:

Unfortunately I grew up with parents who didn't believe in gong to the doctor for anything other than an annual check up. That said, I had a history of joint issues and a allergies. When I was 15 I had a debilitating injury (although not due to a major traumatic event) to my lower back involving collapsed vertebrae. I suffered with terrible periods of immobility and pain for years before my lumbar spine basically fused itself.

I started getting frequent debilitating migraines.

I had small flares of psoriatic skin issues along my hairline. I had a flare of carpal tunnel syndrome that receded with physical therapy.

Here was a biggie: when I was 22 I had a sudden internal hemorrhage in my eye. I was newly married to my husband who was a military doctor in his internship year. I was worked up for everything including leukemia, diabetes, lupus, degenrative neurologic diseases, etc. The official diagnosis was "Proliferative Retinopathy of Undiagnosed Etiology". That is a fancy way of saying I had scar tissue growing in my eye that was tethered to my retina, forming due to periodic bleeding from the tugging, and they had no idea why. I underwent two vitrectomies for the purpose of removing scar tissue from the back of my eye. I received laser surgery to the periphery of my retina to prevent any further bleeding. The only answer that was ever given was that I was probably born with a "funny" vessel in my eye that bled once in a while. I now see out of that eye with 20/200 corrected vision. Sigh.

I started having issues with exercise induced asthma. It happened rarely, only during times of high heat or extreme cold.

At 31 I was diagnosed with Stage III IDC with 3 positive lymph nodes. My tumor was 5.5 cm and the largest node was 1.5 cms. I had 37 lymph nodes removed during my mastectomy. I was ER+/Pr+ with a high level of ER positivity, Her2Neu Neg.

I was treated with Adriamycin, Cytoxan,and Taxol. I had 36 rounds of radiation to my chest and underarm area.

During chemo I remained active despite horrendous bone pain from Taxol and a constant crash of my white cell count. I had to give myself daily shots of neupogen to keep me on schedule.

Good news! Chemo wiped out the psoriatic skin lesions!

As soon as that treatment ended I was put on a twice monthly infusion of Pamidronate which was being researched for the hope it would prevent bone mets. I continued being treated with an infusion of a bisphosphonate for at least ten years post diagnosis. In addition I started taking tamoxifen.

I was diagnosed with a severe case of carpal tunnel syndrome in both hands. I underwent bilateral open surgeries which were successful, but left a lot of scarring.

I finally made the decision to have reconstruction of my breast. The only choice for me considering the amount of radiation I had received was a free TRAM flap. Again, more scarring.

At the age of 35 I was diagnosed with a regional recurrence under my arm where the largest lymph node had been removed. I underwent more aggressive surgery which left a wound that took a very long time to heal. Again the cancer was Er+/Pr+. I stopped taking tamoxifen. I underwent a total hysterectomy and oopherectomy. I started taking arimidex. I was informed I had maxed the amount of radiation I could receive and chemo wasn't necessary at that time.

Around this time I experienced radical scar tissue development from all the surgeries and radiation. It was so bad that if I lifted my arm over my head I lost my pulse. I had done tons of activity, physical therapy and stretching post surgery and this developed despite it. My chest area was treated with Myofascial release which helped.

My exercise induced asthma worsened to where I was experiencing severe issues in mild weather. I underwent a full allergy screening and learned I am basically allergic to everything! Prescribed daily allergy meds and an epi pen for emergencies.

I started seeing a chiropractor for back, neck, and shoulder pain. I received regular deep tissue massage for ridiculously tight muscles.

What had been a lifelong issue with constipation and mild incontinence became even more of a problem. I underwent ridiculous tests including pelvic floor biofeedback that were not completely helpful.

I remained a very active person. I had always been a runner and continued running daily until joint pain got so bad that I couldn't walk afterwards. I switched to walking in the summer and cross country skiing in the winter which was great until I injured my hamstring insertion due to very tight hamstrings. That took two years to heal (although it never completely did). Eventually I found cycling and it was my savior. Very easy on the joints, fun, and gave me back faith in my body.

I had a very scary diagnosis of jaw necrosis (twice) due to my extended treatment with bisphosphonates. I was immediately taken off of them, and also stopped taking arimidex.

Then the bottom dropped out. I started getting terrible numbness and pain in my hands while riding. But the worse was the pain in my knees. The pain in my knees and hands kept getting incrementally worse until it was severely impacting my time on and off the bike. I was diagnosed with osteoarthitis and degenerative arthritis to a number of my joints. I went for cortisone injections as well as synthroid injections to try to lubricate the joints. Eventually these no longer worked.

Simultaneously I started seeing a rheumatologist. I had been tested repeatedly over the years for suspected Rheumatiod Arthritis or Lupus, but my bloodwork never showed it. Finally I was diagnosed with Psoriatic Arthritis. It is an auto immune arthritis very similar to rheumatoid arthritis but does not show up on blood tests. I have multiple joints affected in my fingers, toes, hands, feet, knees, ankles, neck, and most likely spine. I have developed symptoms on my toe and fingernails, but still have not had any of the skin lesions that plagued me pre chemo.

At 45 I had bilateral total knee replacements. Ouch. This was needed because of the extent of my joint deteriation coupled with the psoriatic arthritis diagnosis. I recovered from the replacements and was doing pretty well, despite tremendous scarring and fascial tightness in my legs even though I had regained my range of motion through physical therapy. But I was eventually back on my bicycle, and my knee joints felt better than they had in years.....until I took a fall and shattered my kneecap. (Yes I still had my original kneecaps...I can explain why if you're interested.) After total immobilization for months, the kneecap never healed. I was given the choice of A. Living with the pain, or B. Undergoing surgery to remove the fractured bits with the understanding that my quadriceps muscle might not function properly afterward. I opted for A. and am living with the pain. The muscular and fascial tightness worsened.

Unfortunately one year later I fractured my other kneecap. It was not due to a fall, but rather due to hyper flexion or bending of my knee. The kneecap literally just snapped in half. I attribute it to the severe tightness of my quadriceps muscle and connecting ligaments/tendons. So I spent this winter in a full leg cast, praying for the bone to heal. Thankfully it has, but the musculo skeletal tightness I am now facing is unbearable at times.

My constipation and incontinence issues have worsened. I was prescribed physical therapy which quickly diagnosed my problem as a near inability to relax my pelvic floor muscles.

I do yoga. I stretch. I go for regular massage which is two hours of torture to try to release my knotted up muscles and fascia. I just purchased a ridiculous looking contraption called a "fascia blaster" to try to keep things semi loose between treatments. It is embarrassingly marketed as a beauty aid, but really it is meant to be able to loosen up fascia all over one's body. I try to remain active, even though everything hurts. Some days I literally don't even feel like parts of my body are mine.

My psoriatic arthritis symptoms are worsening. I think I am finally ready (beyond ready, really) to start taking a biologic. I have been taking weekly methotrexate and it is not doing much for my symptoms.

I have also been diagnosed with Raynaud's syndrome in my hands and feet. This is a particularly unfortunate thing since I live in northern Minnesota.

Over the years I have undergone countless bone scans, PET scans, ultrasounds, X-Rays, MRIs, etc. because of "hot spots" that show up and turn out to most likely be musculo skeletal related from injury or stress fracture. However, my bone health is good.

I am 48 years old. I am unbelievably sad that after working myself back to a place where I trusted my body again post cancer I find myself in a hole that I feel keeps getting deeper. Post cancer everyone talks about finding your new normal. I am really struggling with that now.

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Sep 11, 2016 03:24AM Moderators wrote:


We wanted to welcome you to our community here at BCO. Thank you for sharing your story, you have been through so much! We completely understand how hard it's been to move beyond your cancer, with all of the other medical issues you've faced. You're very strong, and we admire you so much.

We have a forum called Moving Beyond Cancer, where members discuss how they've moved on with their lives following their diagnosis. It is not easy, but perhaps you'll find some support and inspiration there.

Please let us know if we can help in any way during your time here. We hope reading stories from other members is helpful!

The Mods

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Sep 20, 2016 07:52AM Rondee wrote:

Advanced TNBC, MS and survivor of neuroendocrine cancer of the small bowel back in 200

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Sep 26, 2016 02:49AM TDF wrote:

I was healthy as could be growing up. Then, when I was 31, I was there for the Twin Towers attack on 9/11 and continued to work in the area for months while the air quality was terrible. When I was 36, I was diagnosed with invasive lobular breast cancer - mastectomy, dose-dense chemo (Adriamycin & Cytoxan). In 2007, diagnosed with spinal disease and arthritis, possibly due to the terrible reactions I had after each Neulasta shot, which led to spinal fusion. In 2011, a pre cancerous mass in my uterus led to a total hysterectomy. In July of this year, I saw a rheumatologist due to increasing, bilateral joint pains. Tested ANA positive and RF positive but no current signs of synovitis. Also diagnosed with Raynaud's. Now, I've had an MRI that ruled out metastases but does show acetabular labral tears in at least one hip and will likely have to have a total hip replacement at 46. I don't know what role cancer and auto immune diseases have played in my life but it does make me wonder.

Chris ~~~ R-Modified Radical Mastectomy-Oct 06 no recon, 4x dose-dense AC, ILC with features of tubulolobular ca, strong ER+/PR+, HER2-, BRCA1/2 negative Surgery 9/7/2006 Lumpectomy: Right Dx 9/8/2006, ILC, Right, 1cm, Stage IB, 1/2 nodes, ER+/PR+, HER2- Surgery 10/5/2006 Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy 11/10/2006 AC Hormonal Therapy 1/24/2007
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Jan 17, 2017 04:07PM mybee333 wrote:

Hi - I thought I might touch base again. Have been struggling since fall with shortness of breath, wheezing and respiratory issues; it comes and goes. I've had varying diagnoses, some say asthma, others a bronchitis causing asthmatic symptoms or a respiratory infection. Have been on multiple rounds of steroids, anti-biotics and the like. Now am having full-fledged flu, I guess. There's a rattling in my chest so I suppose I should go to the doc again but have been to so many lately. I've been wearing a therapeutic 'boot' due to tendonitis in my one foot. Apparently my foot is "changing" with age and damages more easily? That what the podiatrist said. I'm not sure but I damaged tendons and ligaments just walking. Have also got two herniated, bulging discs in my back and spinal stenosis. Not sure what these mean but will see a specialist soon. If I can get my back and feet to cooperate will try some simple exercise soon. I took a fall walking my dog last spring and landed on my implant. It was very painful and my ribs were bruised for weeks but I recovered. I just wonder if I did something to my back at that time.

Don't wait for the storm to pass, learn to dance in the rain. ~ UMX w/ silicone implant reconstruction. Multifocal -IDC, DCIS, Pagets. Dx 4/6/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Feb 9, 2017 03:15PM PeaceAndStrength wrote:

adavis -

You are my soul sister - lol 💕! I have multiple autoimmune issues and a zillion secondary issues that often follow, including pelvic floor dysfunction and gastroparesis, etc, etc. Know you are not alone. IDC is just my most current dx. My husband calls me the 1% (if less than 1% of the population is going to be dx'd with something, it's me - Oy). I also suffer from myofascial issues, was dx'd with fibromyalgia (the pain is like a toothache in my upper back, shoulder and neck and then moves into my head and gives me a migraine). I have tmj issues, as well. I also bought the fascia blaster - 😂!

Do not be discouraged! You will find a way to get your body back! I am no doctor, but what helped me the most recently has been low dose Clonazepam (I just take a 1/4 mg 3 times a day and it has helped considerably with my tense muscles in my back and neck, the tmj, restless leg and the migraines (I only get migraines now at the beginning of my period or if I have alcohol, which is rare and I was fighting that pain daily - of course, if I take any more than I am, I fall asleep). It also didn't hurt that I started taking it shortly before the BC dx. I believe it has helped me be less anxious. But honestly, I had researched it for these other things and I think has helped considerably. Also, and this is embarrassing, but get a Squatty Potty 😉. Again, I have pelvic floor dysfunction and this hasn't helped with the constipation (because I just didn't have the muscle control to go regularly - this stool thing really works)!

Message me if I can help in any way. I am new to the site and have NO idea how that works yet or where to find it, but I will look for it - lol.

DX 01/10/17 IDC/DCIS >1 cm grade
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May 3, 2017 12:44PM - edited May 28, 2017 11:37PM by ThreeC

I have Polycystic Ovarian Syndrome, Hashimoto's Autoimmune Disease, an Adrenal Adenoma, Papillary Thyroid Cancer and now BC. This possible link between BC, Autoimmune and Estrogens have been at the back of my mind for years. Particularly when women with ER+ Breast cancers may have to remove their ovaries and uterus to prevent recurrences. At my last "well woman exam", my gynecologist did my usual ultrasound to check on my cystic ovaries. For the first time in well over 40 years, there were no cysts. During one of two thyroid surgeries I also "lost"two of my Parathyroids. These Autoimmune/Endocrine/Hormonal conditions appear to be the gift that keep on giving. When I had my Thyroidectomy, I didn't have radiation. I wasn't sure it was the right choice as it left me still fighting the autoimmune issues, but I have a family history of both brain and breast cancer and didn't want to use up the potential need for rads in the future. Now, with BC, I'm glad to have radiation available as a possible treatment if needed.

Dx 4/11/2017, DCIS, Left, 3cm, Stage 0, Grade 1, ER+/PR+ Dx 5/23/2017, DCIS, Left, 5cm, Stage 0, Grade 1, ER+/PR+ Radiation Therapy 7/20/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/13/2017 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 6, 2017 03:18AM balli wrote:

another paraneoplastic signing in. I have paraneoplastic cerebellum degeneration there are different antibodies and types though.

I was diagnosed with pcd in late 2015 before cancer had ever come into the picture but because of the pcd it was always coming. Didn't know where though so I had scans every 3 months and cancer was found in my lymph node with no primary tumor found.

Best guess was bc due to the location of the cancer and the antibody for the pcd.

I've finished chemo and have a preventive double mastectomy on Tuesday

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May 6, 2017 05:26AM Moderators wrote:

Hi balli, and welcome to Breastcancer.org!

Thanks for chiming in. We're sure your perspective and experience will be helpful to others here.

Best of luck on your surgery on Tuesday! If you're looking for some tips/tricks/advice for preparing for surgery and the after care, our Surgery - Before, During and After forum is chock full of great info!

We hope this helps.

--The Mods

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May 14, 2017 03:04PM Teachermom46 wrote:

Wow! I am so glad I found this thread, as many of you have said. I have an extremely rare thing called Autoimmune Autonomic Ganglionopathy. It has made my life pretty miserable the last couple of years. I was finally diagnosed with it in February of 2016 after almost a year of bizarre symptoms caused by both sensory and autonomic nerve damage, so I started IVIG. Well, don't you know, when I went in for my annual mammogram 5 months later, I found out I had Stage IIA/node negative ( just at 2cm), Grade 1, IDC in my left breast! The PET scan didn't pick up my breast cancer even though my oncologist said it had been growing there a long time! I was almost relieved to discover a possible cause to my problems, though, and I was hoping to have relief of all my neuropathy issues once the cancer was out. I had a double mastectomy, no chemo (due to low Oncotype score), and am on Arimidex (I'm almost 55). However, it's been 6 months since my mastectomy, and I still have severe parasthesias and other symptoms (the other symptoms are better, though). Because my neurologist doesn't really think my BC caused the autoimmune disease since the AChR antibody typically presents with lung cancer (and thankfully, I don't have that-I've had multiple CT scans to make sure), I just finished another 4 month cycle of IVIG treatments (which haven't really done much to help so far). Maybe it's too soon to tell, so I'm still hopeful. It does make since that there is a suspected link between BC and autoimmune diseases. If anybody out there can relate to anything I've said, I'd love to hear

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May 15, 2017 02:54AM - edited May 15, 2017 02:55AM by Moderators

Teachermom, welcome to BC.org! We're sorry you had to join us, but glad you found this amazing group of people!

Till you get feedback from other community members here, this is what we've found in our main site on breast cancer and immune system:

Why Doesn't the Immune System Stop Breast Cancer?

Hope this helps! Please keep us posted on how you're doing.

The Mods

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