BC & Autoimmune Diseases: How many? What does the research say?
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Hi Candy,
Well what you want and what you get are two different things. If you don’t want neurologist (I would - afterall you are stage IV), then make sure to go back to the Rheumy and say it stops here!
. Any chance you can get a new MO? She doesn’t seem to be on your side in the way she talks to you.Fingers crossed no strokes in the meantime!
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Hi Candy,
I think you should call your Rheumatologist and advise that MO is not willing to treat you for this condition. Ask if he is willing to treat for it and if not find one that will.
I co-own a behavioral health practice and often run across patients that ask us to treat something their PCP should be treating. Yes, we can treat thyroid condition, hypertension, vitamin deficiency, and so on. However, this is considered beyond the scope of our practice and therefore could put our license in jeopardy should we choose to write scripts for things we are not board certified to treat.
I don't think your MO is passing the buck but instead practicing within the scope of her certification. Just because she's a doctor doesn't mean she is familiar with or comfortable treating that condition.
My MO office is doctor owned and operated and my MO will not treat my hypothyroidism. I don't want her to. I want 100% of her time spent treating cancer and 100% of the CME's that she's required to have each year spent on cancer related issues not other specialty issues.
I know it can feel like a chore to go to separate docs, believe me, but try to think of it as you're getting the best treatment from the people most qualified to treat each condition.
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Thank you ladies for the support.
Marijen- I don't know what I am going to do yet. Yes I can have a neuro on board. But I also want the MO to know what is being done and if some meds/treatments may be worse for the cancer/next cancer treatments have a discussion about it. I think the MO needs to treat my situation as a whole situation. Not just her treat cancer and the other doc-neuro or rheumy-treat the blood clotting issue and not think how they could effect each other. I am worried about my MO and our relationship. When my cancer worsens, will she be there for me. Or shut down the conversation or be too busy then.
Hope-- I understand where you are coming from. But a behavioral health practitioner managing thyroid or hypertension is different than a hematologist/oncologist treating a hematology condition. She said to me that she COULD treat this, but WOULD NOT since she did not initiate the diagnosis by ordering the blood tests.
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Candy, if your rheumy and MO have declined to treat you, you have a perfectly good reason to schedule an appoint with a neurologist. Since the issue is possible stroke in your brain, you may be better off that way.
Let us know what you decide. Right now it's like you're beating your head against the wall hoping these two docs will step up.
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Thank you ladies for caring and posting. We all understand how it is trying to advocate for ourselves about our health. I have been with my PCP for over 20 years. He knows me and I know him. I respect him. I plan on being very candid with him at my next appt. He started all this with ordering the first blood test. Then he backs off from recommending treatment. I plan on telling him how disappointed I am with his attitude. We will see how the conversation goes. I may tell him, "Ok no one wants to step up and handle this. So we won't handle it and pray for no strokes. But if it happens, it is on your head." I am getting tired of doing their job for them. It should not be the patients responsibility to seek out treatment.
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Hi Candy am just catching up. Any word about a Neuro? Or whether your Rheumy will treat you for this condition?
I'm sorry you're having to do "the dance" but sadly it seems like what those of us with multiple conditions just have to do. It's exhausting, I feel ya, truly. I'm having to add two more specialists into my circus this month, a Immunologist and an Endocrinologist. One is to figure out why I'm freaking allergic to Zoladex and if I'm not allergic, then what the heck caused my neck to swell for most of July. (Yay, there goes my only NON surgical hormone treatment option I had left!) And also, to diagnose and treat the thyroid nodule they found while USing my neck 2 weeks ago. Fun times with co-morbidiites. Ugggh. So I sympathize for the complicated, stressful, and frustrating path we have to tread.
Anyway, I know it may sound daunting to add another dr to the team but in the end, you may be really thankful for a Neuro. I know once I had the initial visits with my own, about 10 years back, I only needed to see her for a yearly check-up and/or a MRI if my prior wasn't stable. Maybe that might also be true for you after the initial visit and such?
Keep us posted and am thinking of you.
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Hi Spoonie!!!!! Good to hear from ya.
I am in waiting mode for now. Protocol states to repeat lab tests in 12 weeks to make sure not a false positive result. ( 12 weeks up after Sept 18 ) If positive then, I will be classified as positive for Antiphospholipid Syndrome. But on the doctor front, I really wanted my onc, who is also a hematologist, to take care of the cancer AND the syndrome. But she was VERY upset at my last visit with her. She was upset that the docs-PCP and rheumy- ordered the panel of tests for the APS syndrome and then said SHE would take care of the treatment plan. I have a routine follow up with my PCP end of Sept and the rheumy routine follow up beginning of Oct. The next discussion I plan on having is with the PCP in Sept. He actually started all this with the first lab test and I have been his patient for over 20 years. I plan on telling him SOMEONE is going to take responsibility for this and see what he says. Also who is going to order repeat tests- PCP or rheumy???? In the meantime I am using OTC baby aspirin for blood thinning and hoping I don't have anymore clotting issues - TIA or worse. I can understand using a neuro for a TIA or God forbid a stroke. But the APS syndrome can also cause clots that cause a heart attack or a DVT. So will the neuro care of me if I have a heart attack or a clot in the leg??!!! Would the rheumy??
Oh my about your current issues!!!! I hope you are not really allergic to the Zoladex . But how about Lupron injections?? That is what I use.
Also I was diagnosed with a thyroid nodule in 2015, 2 years before the breast cancer. My PCP handled that. We did an ultrasound and thyroid biopsy. The biopsy was negative for thyroid cancer and my thyroid labs were ok showing the thyroid was still functioning. So we were just routinely monitoring it for issues and then BAM the breast cancer. All related somehow I know. But we never discussed an endocrinologist. Go figure.
I do sympathize with you about all the docs. I hate we have to be parceled out for all our issues. The fewer cooks in the kitchen the better I think.
Keep me informed of what they find out about your allergy and the thyroid issue. Take care.
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Maybe a Cardiologist is called for more than a Neuro in that case? Sounds like you have good questions on the list for your PCP. Hopefully he can give you some answers. It definitely seems like there should be a specific someone in charge for this new syndrome if repeat labs confirm it. Waiting is just the worst. Sept for you Im sure seems like forever. Hang in there.
As for me, it seems like most people (rare bit it happens) that are allergic to Zoladex are allergic to Lupron and other hormone antagonists. If my MO wants to try another they'll have to test it first on me via labs etc. No way I'm going through another horror story month to "try it". It was just a nightmare.
This is what I looked like for most of July after the Zoladex. On left is after 36 hrs of Prednisone and on right is without prednisone, the day I was turned away from my MOs office and saw my PCP.
My MO refused to help me even though their drug caused this. They deny Im allergic. How can they say Im not? Either way they didn't help me when I presented to their office looking like this and with my timeline. They sent me away. It was awful. Not sure if I will be going back to her. Will see what Immunilogist says.
I'm glad your thyroid nodule turned out benign and that because of that they discovered the breast cancer. Small miracles right? Sometimes they do happen. I'm hoping mine will be benign too but I have 2 siblings with thyroid cancer, i hae hypothyroidism already & my ultrasound shows it as solid & hypoechoic. Not great but still possible it can be benign. Will have answers in Sept or Oct hopefully, my fingers are crossed a cancellation or two gets me in sooner for the consult & then they can do the FNB.
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WOW your neck was really swollen at first. Any shortness of breath, trouble swallowing, or itching?? What will you do if you cannot tolerate Zoladex or Lupron? Unacceptable that your MO would not treat it.
Actually, the thyroid issue for me did not lead to the breast cancer diagnosis. I found a lump for that. And my docs have never made the connection between the two. I did that after reading about autoimmune issues, thyroid issues ,and cancer all working together. If yours is thyroid cancer, I read that it is a "good" cancer and treated with removal of the thyroid gland. That is all. Keep us/me informed.
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I accidentally came across this article today. Very interesting. Spoonie and Candy, know anything about PMR (polymyalgia rheumtica or giant cell arteritis?
Getting the Right Care for Painful Autoimmune Conditions
https://www.enmnews.com/2019/08/19/getting-the-rig...Spoonie, yes I see a big difference in your neck. If it's not allergy what else could it be? Side effect?
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Marijen- I have heard of both conditions mentioned in this article but I don't know that much about them.
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Thanks Candy, unfortunately I have developing symptoms that were mentioned and I meet the age requirement :
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Marijen- Oh my. What next?
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I saw the pain doc and she said I have neuropathy from BC treatment - radiation and letrozole which I’ve been off for two years. She gave me LDN - low dose naltrexone, it’s helping but I need a stronger dose. Like I said I just happened on the article, was checking the nuclear blast in Russia
, and saw autoimmune article. I have a feeling this new problem is never going to go away. 0 -
Like I said, I would have to research the conditions and learn about them. And I am sure you will too. And talk with your rheumy about if they think it is this and what to do next. You are in my thoughts. Keep us informed. Good grief. Always something, right.
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Yeah, always something! Gilda
So I don’t have a rheumy but I did have a negative RA test a few years ago, The tests are CRP and I will mention to the MO and pain doc in Oct. Thanks for your concern. I read one of your other posts today. On a scale of 1-10 how cruddy do you feel?
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I had to reread my posts to see what you were referring to... "cruddy". Hahaha. Long story short I have some sort of pain somewhere all the time. Never under a 2 or 3 and up to a 8. RA, bone mets, or Aromatase Inhibitor use for the cancer. Who knows the cause. I guess I was limping yesterday at church and one lady noticed and ask me what was wrong. Just "normal" for me.
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So you are still on letrozole? That would explain a lot. Welp I hope I don't have bone mets. The pain is more in my nerves and muscles I think. Pain is so difficult to describe. It's all over, that's for sure. How do you manage the pain?
Are you still on Ibrance?
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Yeah I am on Letrozole and Ibrance. I know the pain can be from the Letrozole. But also the RA that is going untreated ( off med when diagnosed with BC and never put back on ). My Sed Rate was checked in June and the number was 60. Normal is less than 20 I think. And I also have bone mets documented in spine and pelvis. I pretty much just deal with the pain. I will use Tylenol Arthritis sometimes but for the most part just deal. Hobble around. Lots of pillows in bed at night for positioning. Cannot lie on Left side, or on back for very long ( with pillows under knees ), or on stomach. Roll, roll, roll and restless sleep. Grunt and groan when getting up after sitting. Cannot kneel on floor for any length of time. Tried Heating Pad when sitting in recliner. But with the hot flashes, oh boy. It is what it is.
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That sounds horrible all the way around. You are tough! But it wouldn’t hurt to take the tylenol more often? Why are you “white knuckling” the pain? I noticed when I missed lunch the other day my pain got much worse. Must be the shortage of protein...
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Well one thing leads to another. Paraneoplastic Syndrome or PNS can be generated by an immune response to cancer tumor, including breast cancer. This from Wikipedia, not the wholle page
Paraneoplastic syndrome
A paraneoplastic syndrome is a syndrome (a set of signs and symptoms) that is the consequence of cancer in the body, but unlike a mass effect, is not due to the local presence of cancer cells.[1] In contrast, these phenomena are mediated by humoral factors (such as hormones or cytokines) secreted by tumor cells or by an immune response against the tumor.
Paraneoplastic syndrome Specialty Oncology Paraneoplastic syndromes are typical among middle-aged to older patients, and they most commonly present with cancers of the lung, breast, ovaries or lymphatic system (a lymphoma).[2] Sometimes, the symptoms of paraneoplastic syndromes show before the diagnosis of a malignancy, which has been hypothesized to relate to the disease pathogenesis. In this paradigm, tumor cells express tissue-restricted antigens (e.g., neuronal proteins), triggering an anti-tumor immune response which may be partially or, rarely, completely effective[3] in suppressing tumor growth and symptoms.[4][5] Patients then come to clinical attention when this tumor immune response breaks immune tolerance and begins to attack the normal tissue expressing that (e.g., neuronal) protein.
The abbreviation PNS is sometimes used for paraneoplastic syndrome, although it is used more often to refer to the peripheral nervous system.
https://en.wikipedia.org/wiki/Paraneoplastic_syndr...1 -
Marijen- Interesting. Are you having any of these symptoms? Seems like neurological symptoms. I would have to read more to see how they test for it, treatments, etc.
I could take more Tylenol. I don't know why not. Just feel like I would have to take it all the time--3 times a day, every day. And, of course, it only helps so much. I have never been a medicine taker. The less the better I think. And I have had some sort of pain for years. I also have low back issues from my job for so many years. And the RA pain even before diagnosis.
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I don’t see any symptoms listed in my post above here? My point is that a tumor can cause an autoimmune reaction as is the point of this thread. Knowledge is power. 10-20% of cancer patients also have paraneoplastic simultaneously or before the cancer is found. If you look at full wikipedia page, this disease attacks many parts of the body, not just neurological. I did a search here at BCO and there are only a few mentions of PNS over the last few years. Most likely it is missed more than not in cancer patients.
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hmmm, I'm not an expert but I think pain, especially great pain is a drain on the system, can work your body overtime dealing with it and slow you down. Especially mobility. It might be in your better interest to take something, tylenol, ibuprofen,salonpas, lidocaine cream, curcumin?and be nice to yourself!
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Our bodies are complicated. We probably have more things wrong than we realize. LOL.
Thanks for caring. Hugs.
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Well I’m sure my doctors are trying to add to my list of issues! It’s a competition
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This is my first post here. I haven't read all of the many previous posts.
I'm actually writing about my sister who is Triple Negative and has the BRCA1 gene mutation. She only learned late last week that when they did her double mastectomy six weeks go, they removed 7 nodes on one side and 3 nodes on the other side. She only had cancer in one breast. She also has *severe* rheumatoid arthritis throughout her body. It's most obvious in her foot area where her feet and ankles are severely swollen.
Last week was when they finally gave her information about lymphedema. I'm not sure how thorough the discussion. I have a question about blood draws, blood pressure, etc.
Under the circumstances, where will they take her blood draws and blood pressure since they can't on either arm?
btw, I never heard of the word comorbidity before I saw the title of this thread. It sounds very scary. I'm extremely concerned about my sister because she lives alone...though her office is in her house and and employee is there 3-4x's during the week.
Thank you for any insights you can share.
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First, they need to explain why they took nodes on both sides. Oncologists are woefully prepared to talk about lymphedema. Mine actually said he had nothing to do with that. Go to my PT. Yikes. I have a port for various reasons including blood draws. I got it originally for chemo but kept it because my veins are shot and it can be used (in some states) for injections for scans and blood draws. Very handy. You just have to "train" your medical providers to use it as needed. Maybe she could get a port? Still confused about the two-sided node removal.
Co-morbidity just means you have more than one disease at the same time. I have MS and stage IV breast cancer. Not even the trifecta. Many older people end up with multiple medical issues. But I bet she's young. At least younger than me.
Sounds like a lot of questions need to be asked and ANSWERED by her doctors. Good luck with that.
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Viewfinder, I read in another thread that your sister is exactly my age, 70. I'm not stalking you (well, maybe a little) but was looking for the thread labelled "co-morbidity" because I used to post there. It is not active at all so I stopped. I learned something from this discussion. I knew there could be multiple sentinel nodes but I thought maybe 2-3. Seven seems like a lot. My BS told me sometimes it is hard to tell which one is the sentinel so she takes a "few." The fact that they didn't take them all probably means there was no cancer in the sentinels on either side. My sentinel was positive so she took 14 or all she could find. I don't think seven would be all. That's a very good thing.
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Hi jaycee,
I don't consider that you've stalked me at all. I'm grateful for your interest and appreciate your insights and advice.
Actually, I've read many of your posts, as well as the posts by others in the death and dying forum. I never responded or asked questions (despite having several) because the forum is for "Stage IV members only."
My heart goes out to Stage IV members. Their courage is so inspiring. Within the last six weeks, I've lost two friends with metastatic cancer. Both fought the good fight to the very end, one for six months, the other for 12 years. I know they are in a better place, the suffering over, but my heart still aches every day.
Forgive me for digressing.
I'm not sure my sister had her chemo port removed yet but when I speak with her later, I'll discuss her lymphedema situation in depth.
Her very busy business helps keep her mind off of things. I try keep up on developments so, hopefully, she won't miss anything (like this one). Sometimes I feel like a pest but she's told me she appreciates my help and research.
Your post above is helping me formulate some very good questions for her to ask her doctors. I sincerely appreciate it!
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