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Topic: Does anyone have multiple autoimmune or mast cell disease?

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: Oct 28, 2018 05:29PM

cbmom3 wrote:

I'm having a hard time with complications and side effects from treatments because I have three autoimmune diseases (lupus, sjogrens and mast cell activation syndrome that is the most active of the three) in addition to my breast cancer. The radiation oncologists won't give me radiation because they feel its too risky (my skin is very sensitive to everything from heat/sunlight to surgical glue) and I have many medication allergies. I had very high fevers after my mastectomy and now I can't tolerate my tamoxifen without major side effects.

Has anyone else with active autoimmune disease found treatments that they don't react to?


Dx 5/2/2018, IDC, Left, 2cm, Stage IIB, Grade 1, 2/12 nodes, ER+/PR+, HER2- Surgery 6/13/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/19/2018 Lymph node removal: Underarm/Axillary Hormonal Therapy 7/31/2018 Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 10, 2018 06:20PM - edited Dec 14, 2018 08:24PM by Spoonie77

Hi CBMom -- I'm just seeing your thread now. How are you doing? Did you find anything that worked or in the end did you have to forgo RADs?

I also have multiple autoimmune issues, which is one reason I am not able to or willing to take Tamoxifen. I'm sorry that you had such an awful time on that medication, though, given what I've found in studies, there's so much they don't tell us about the rest of our system that it effects. No surprise there I think.

Going in to all this I was hoping that my team would take into acct my other issues, but it seems they didn't really take them to acct, if they had, they would've told me about the impact tamoxifen has on the immune system. But no one did.

I have Myocarditis, Chronic Late Stage Neuro Lyme Disease, Fibromyalgia, Sero Neg RA, Raynauds Syndrome, and Biotoxin Mold Illness (aka CIRS) just to name a few.

I'm following up with my MO this week, she's probably not going to be happy with me about the Tamoxifen, but I just can't do it, not with how it will affect my immune system (so many studies proving how it tanks CD57 and more) and how I have responded poorly to the transfer to a new anti-depressent that was "ok" with Tamoxifen. My QOL right now is more important than a possibility of cancer, maybe, somewhere down the road.

I am hopeful that she will have another idea to try instead of Tamoxifen or shutting down my ovaries. IDK.

My fingers are crossed that you found something that would work for your situation. If you have, let us know what's working. I'll post if there is something my MO comes up with. It seems that there aren't too many options other than Tamox and/or surgery/shutdown for those of us that are Pre-Meno.

Sending healing and hugs...

ETA - For anyone that stumbles on this thread searching for info about immune systems and Tamoxifen, I did quite a bit of research on this while making my decision about horomone therapy. My thread, Any Early 40s Declining Tamoxifen? there are a few posts that link to specific studies demonstrating the effect this drug has on our immunity. FWIW. :)

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 8/29/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Radiation Therapy 9/30/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/1/2019 Zoladex (goserelin)
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Dec 11, 2018 06:06AM dtad wrote:

Hi all. I also have multiple autoimmune disease which has had a huge negative impact on my QOL. I'm older than you but it is the main reason I declined anti hormone treatment from the start. Just too sick to chance being sicker from side effects. We all have to make our own informed decisions about treatment options. Good luck to all navigating this complicated disease.

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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Dec 11, 2018 06:27AM - edited Dec 11, 2018 06:29AM by Shellsatthebeach

I have Grave's and Hashimotos. Yes, at the same time intermittent. At times my thyroid runs too fast and I will get heart palpitations and other times it runs sluggish. I always feel extreme fatigue but have been living with this for years. I do take Tamoxifen. I haven't noticed any change good or bad. I was going through menopause prior to starting. Maybe that's why I'm not noticing any changes.

Dx 3/2017, IDC, Left, 3cm, Stage IIIB, Grade 2, ER+, HER2- Surgery 8/28/2017 Lymph node removal; Mastectomy: Left Dx 9/15/2017, DCIS/IDC, Left, Stage IIIB, Grade 3, 6/10 nodes, ER+/PR+, HER2+ Targeted Therapy 9/24/2017 Herceptin (trastuzumab) Radiation Therapy 10/17/2017 Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxotere) Targeted Therapy Perjeta (pertuzumab)
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Dec 11, 2018 08:49PM - edited Dec 11, 2018 09:37PM by Pjaye

Hello to all. I hope you're doing okay today. Thank you so much for sharing your journeys as well as about co-occuring autoimmune conditions and the decision making associated w/hormonal therapies with autoimmune. I'm brand new to this forum. I'm so grateful to have found this community.

I'm 55. I had left mastectomy 4 months ago. I was diagnosed in June after routine mammogram and subsequent needle biopsy. I had 2 small areas of malignancy separated by several centimeters of tissue. I decided on mastectomy rather than lumpectomy hoping to avoid radiation and chemo (if no node involvement) due to what would be almost certain complications from radiation as well as chemo given my autoimmune status of Sjogrens syndrome and discoid lupus resulting in very atypical tissue response to surgery and other treatments.

My autoimmune status has complicated my recovery, and is catalyst for woeful decision-making regarding tamoxifen. I already experience significant quality of life issues associated with autoimmune disease. I sought a second opinion oncology consult due to my negative surgery experience. I didn't trust myself in choosing a good fit because of my surgery experience. See verbose description below. My apology in advance of the 'core dump' that follows. It's taken me 4 months to emotionally process all the added stress to bc and mastectomy journey due to my choosing surgeon with a very 'problematic bedside manner', in addition to multiple administrative blunders associated with surgeons office mgmt, as well as hospital administrative error. This is the first time I've been strong enough, emotionally, to reflect on my journey and put it into complete frame.

One lesion DCIS/7mm/grade 2, one IC/3mm/grade1, 1% growth rate/KI67, ER+/PR+/HER2- Sentinal node biopsy - 7 removed. No lymph node involvement found. Surgeon never explained surgical approach with nodes except to comment, stoically, that I had more sentinal lymph nodes than average. The surgical site is a mess under my arm. Surgeon never gave me a heads up that I could expect excess tissue under my arm due to having large breasts. I know, now, after consult with other doctors that the surgeon clearly knew that a 'dog ear' was likely in my case. It's not too much to expect your surgeon to inform on those post surgery potentials. I thought something had gone wrong with the tissue under my arm. It was an emotional breaking pt for me after all the unexpected/unnessessary negatives I'd experienced up to that point. This was same day that my lymph node pathology was mistakenly posted on patient portal without any heads up. When contacted about the unimaginable mishap, the staff member's response was to remove the report from view until surgeon could give the results of node pathology on the scheduled follow up. To her credit she did apologize, but the surgeon never mentioned it. The wait to find out if nodes are impacted is beyond agonizing. Then, to see what 'seemed to be' node pathology cavalierly posted without any forewarning is just crazy-making. What if my results hadn't been what they were and that was the way in which I learned...on a computer screen? Omg. I still can't believe that error was made...and worse, the surgeon never brought it up. She needed to have addressed it, said she regretted the stress it added. In addition, if only my surgeon would have respected my journey enough to explain that I might need an additional procedure to address the painful 'wad' of skin projecting into my inner, upper arm. It would have taken only a few minutes to explain that potential. I would have been better prepared. It would have at least saved me from believing that something was wrong.

I experienced serious post surgical hemmorage that likely began immediately after the surgeon closed the mastectomy incision. It took 5 hrs for hospital to set the OR back up to handle the emergency. I went unconscious a few hours after being placed in my room, due to blood loss. I was fine, it seemed, after surgery. My husband left to feed pets with plan to come right back to hospital. No one caught the hemorrhage. My bp was dangerously low 76/47. It was very scary for me and my family. Oddly, but not surprising, surgeon never mentioned the complication after going back into surgery to address multiple bleeds. So, the day after emergency surgery I asked the surgeon if there was any experience with that particular complication in the many, many mastectomies performed, and the response was a stoic “no". After that brief exchange, the surgeon interacted with me as though the hemorrage never happened. She did not even bring it up at follow up in the office. I theorize the surgeons 'personality type' would not allow reflection on my having tried to inform 3 months prior, at first appt, that I tend to have complications with 'any' surgical procedure. The complications can range from extreme swelling, infection, to hemmorage. I even inquired about banking my blood. I think surgeon thought I was being overly cautious. I always felt dismissed in this surgeon's presence. That sense as a patient of being marginalized should never occur.

Since then, it has been affirmed by other patients comments as well as a few clinicians who are familiar with the surgeon that there is an issue with bedside manner, as well as interacting with coworkers in an aloof/insensitive manner

Good news is after transfusion-worthy anemia/hemocrit in lowest 20's, I have battled back within normal hemoglobin levels. It took almost 3 months for those levels to normalize.

I regret not listening to my intuition early on telling me the surgeon was not a good fit. In hind sight, I realize my decision making was compromised by feeling overwhelmed with shock re diagnosis, and further complicated by a beloved doctor telling me that this surgeon was highly regarded. So, I overroad my typically dependable intuition by telling myself that this surgeon was perhaps just atypical in the area of personality type. But, the signs were all right there in front me that there was a significant deficit in information transfer, empathy, and demonstrated compassion. I regret that I did not move on to choose another surgeon. I felt paralyzed after my bc diagnosis. There were many signs I needed to consult with another surgeon. My first appt, I was told surgery would be schedule within abt 4 weeks. 2 months later, after multiple excuses by office staff member as to why I had not been added to surgery schedule, I found myself, literally, begging to be scheduled. I had cancer in my body. It was almost 3 months before I could get a surgery date, on a Saturday. Unnessessary schedule mishaps due to administrative errors, delays in getting calls returned, complications of some kind that regarded communication between the two pathology labs handling my biopsy samples, hospital admission wrought with foul ups - no personnel there to receive me/check me in, discharge orders not complete due to lack of follow through by surgeon, and a variety of other issues were added to the already beyond stressful journey from the very beginning to the last time I went in for follow up. I have since gotten another surgeon. With that list of negative experiences, I will add that it appears the margins were very good, to the surgeons credit. And for that I'm so grateful.

I'm trying to make a decision on tamoxifen. I have consulted with 3 oncologists. I can't get a consensus. The MO whose disposition I really like, offered on first appt, regarding my comorbidities, “I think tamoxifen would be very bad for you". Then, when my husband and I brought the subject up on 2nd appt, he walked his statement back seeming uncomfortable when we repeated what he's said about hormonal therapy and he quickly redirected dialogue with the declaration, “I'm not a homeopathic doctor". Wow. Never thought he was. Never articulated anything that would give him the impression that we were looking for homeopathic doctor. So, that statement really threwus for a loop. He's a really good guy and we believe he is also a really good doctor. But, I get the sense that some MOs stress over, or imagine scenarios where their patients blame them if cancer reoccurs. ? A lack of consenus, after meeting with 3 MOs, is frustrating. I have a decision to make. I think I have made it, though.

My quality of life, especially now with added fibromyalgia developed post surgery, is a huge factor in that decision making. Honestly, I'm not surprised about that development given the added stress of the negative experience I had with surgeon and hospital.

In so many different areas, I've learned more since finding this site than in the previous 6 months. I am open to and appreciative of any feedback/guidance.

I am so moved by your journeys. I'm inspired by your demonstrated strength and compassion. I am sending good energy, hopeful vibes, and virtual hugs to your spirits.

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Dec 14, 2018 06:51PM - edited Dec 14, 2018 07:29PM by Pjaye

Hi CBmom,

I hope you're doing well. I'm very new to this community. Still learning to navigate it. I have autoimmune conditions and was very recently disagnosed with fibromyalgia -developed since my mastectomy in Aug. I'm, also, allergic to adhesives. Not tape adhesives, but liquid skin adhesives.

I was curious about your mention of mast cell dysfunction. My diagnosis of sjogrens syndrome, via antibody testing, then discoid lupus, via skin biopsy occurred in 2013. I had been having symptoms for years before I was diagnosed through a rheumatologist and subsequently a dermatologist with a lot of experience in autoimmune skin disease.

After reading your post, I've been contemplating bringing up the potential of mast cell disruption in my next appt.

I've experienced atypical tissue responses, as well as overt sensitivity to anethesia over many years when undergoing surgical procedures. Just wondering if mast cell issues might help explain the episodes that occured in separate incidents including angioedema, ileus, unusual swelling, and hemmorage.

I started some initial research after reading your post. If there is anything you could share re associated symptoms -how you were diagnosed, the diagnostics involved in confirmation of a mast cell disorder, I would greatly appreciate it.

In case sharing this would be of help to you: I saw a new primary care physician this week who brought up the potential of cbd oil in addressing my autoimmune symptoms and most recent fibromyalgia dx by rheum. She explained that she had dismissed cbd products medical validity until recently. She shared that she has been studying reports over last year re efficacy, and has autoimmune patients who have reported much improved symptoms. As a result of that added scope, she is recommending that I consider a trial run.

It was the first time any physician had ever mentioned cbd oil as a potential help in managing autoimmune related issues. She even provided a list of pharmacies that dispence cbd products.

I'm going to ask for feedback from rheumatologist about trying cbd oil, but I am inclined to try it since side effects aren't prevalent. I have been taking plaquenil for several years now. The potential that my symptoms/quality of life would be worse if I didnt use it, makes it the predominant Tx for me. I'd wondered, during first couple of years of use, if I could go off it. It's year four on it. Now, not willing to test it out.

I was prescribed cyclobenzaprine upon fibromyalgia diagnosis with goal of helping with better quality sleep due to increased overall body pain that started developing around week 8, post mastectomy.

I do an organic, sugar/gluten/dairy free diet plan. I, also, do tai chi to try and maintain flexibility and reduce pain in my joints. I think these measures likely help provide some amount of relief.Best to you and yours. Wishing you a peaceful weekend.

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Dec 15, 2018 06:32AM dtad wrote: sorry you are suffering. Those of us who deal with multiple autoimmune disease and poor QOL issues are unique. Most of the time treatment options are influenced by our already poor health. Just FYI someone just posted a great study on the benefits of Tamoxifen. It worth reading. Good luck and keep us posted.

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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Dec 17, 2018 03:18PM - edited Dec 17, 2018 03:23PM by Pjaye

Hi Dtad,

Thanks very much for your kind response. Thank you, as well, for the mention regarding benefits of tamoxifen. I look forward to reading and increasing my understanding and peace regarding decision making.

I started cbd oil and am hopeful that it might mitigate my recently developed, post mastectomy fibromyalgia pain. I was acclimated fairly well to dealing with Sjogrens symptoms that include, significant joint stiffness, etc...but the addition of body-wide muscle and nerve pain is a whopper to endure. I 'think' I may be experiencing relief via cbd tincture. It's too soon to confirm. I'm going to stay with it for a month. I didn't wake up in pain as much, last 2 nights after using cbd tincture as I have since surgery. When I do wake up it seems the aches/pains are not as severe. I am achieving rem sleep, as noted by my recall of having a dream state -which had really not occured since surgery. So...I hope these are solid signs of increasing improvement.

I utilized risk calculater posted. I really appreciate becoming aware of it through this community. It's certainly not the only factor I'm using re making a decision on tamoxifen, but given the resource tool's result, when putting in the pathology features it asks for; It validates/supports my concern about leaning toward QOL issues as a predominant consideration. My risk/benefit metric was the same with and without use of tamoxifen upon plugging in my pathology stats into risk calculator. In addition, given 'relative' vs 'absolute' gains in use of tamoxifen, I can't make a decision in avoidance of autoimmune reality. I'm at high risk of significant side effects with my autoimmune and, now, apparent, fibromyalgia, in tandem with an already thickened uterine wall. My most weighty concern in considering potential side effects is worsening lupus status into systemic lupus, and development of uterine malignancy. But, also, I know any uptick in stiffness/chronic pain would put me over the line in being able to manage from a psychological health perspective. It's already difficult.

I was challenged by uterine fibroids, and subsequent anemia due to heavy periods that developed in my early 40's. Had a myomectomy over 10 years ago in effort to avoid more invasive surgical approach of hysterectomy. And, still, even with that 'gentler' approach, I had complication with, so-called, out patient, laparoscopic procedure. I was admitted to hospital for 4 days the day after myomectomy due to peristalsis interuption of my intestinal tract.

My tissues just don't tolerate surgery/anesthesia well, at all. It gets scary. My previous gyn suggested birth control pills to avoid surgery and uterine ablation. The pill worked quickly and well to address heavy periods/anemia. Problem hindsight is 20/20...gyn kept me on them for 5 yrs. Its been suggested, by more than one clinician, post bc diagnosis, that the hormones in birth control pills may have contributed to (or possibly caused) bc. My new gyn commented that she would not have prescribed the pill after age 50. I've noted, recently, via this frustrating, scary journey, that doctors seem to lean toward avoiding saying 'anything' that cld be viewed by a patient as criticism of another doctor/colleague...which communicates, to me, that there's a tendency by, at least, some doctors to value another doctor's repute over advocating on behalf of their patient's sense of well being, unfortunately. This does not appear to be the case with my new breast surgeon or new gyn, I'm relieved to report.

Anyway, I was on birth control pills when I was diagnosed this year. Obviously, I discontinued use. *shaking my head. I trusted my former gyn's clinical judgment in keeping me on them through to my mid 50's. In all fairness, many women take birth control pills after 50 and don't develop bc. I won't ever know if it caused my diagnosis.

Hopefully, as a measure of 'treatment', discontinuing birth control pills combined with weight loss, organic diet, exercise, raising my vitamin d level from a really low 14 to 40, (aiming for 80, which is suggested as an effective level to lower risk for bc), etc., has/will continue to be helpful in facilitating hormonal parity, given my hormone receptor status.

I meet with my MO next month. On my 2nd visit with him, last month, he told me that he would be supportive of whatever I chose to do re tamoxifen. He is a kind-spirited, Otto Warburg deciple, i.e. cancer-as-result-of-disrupted-metabolics kind of guy...Mitochondrial dysfunction, et al. I'm focusing on learning/doing all I can to manufacture more mitochondria, and facilitate the mitochondria I have in better functioning.

Apologies for the novel, dtad. I think this site has sparked some cathartic energy in my processing that has been helpful emotionally/spiritually. I've been mired in sense of shock/fear. I so appreciate your empathy driven spirit, and you sharing your journey. It has been a relief to encounter your similar challenges with autoimmune in adding edification to my bc journey/treatment contemplations.

Wishing you, and all us gals/our families a sense of calm, sustainable peace and hope as we navigate. Seasons Greetings, and love to all!

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Dec 22, 2018 05:11PM cbmom3 wrote:

Thank you for all the informative responses. It looks like I'm not alone in navigating breast cancer treatments with a host of autoimmune diseases. I went off Tamoxifen about 2 months ago due to severe side effects. My blood counts started coming back abnormal (even showing immature stem cells that are supposed to stay in my bone marrow), my blood pressure rose substantially, and then migraines started - after 14 days straight of a migraine my oncologist told me to stop. The next plan is to try aromatase inhibitors with an additional drug to stop by ovaries from working (and eventually removal of my ovaries if I tolerate the AIs). I'm worried that the side effects are going to be brutal but hopefully not worse than those from tamoxifen. As I was reading all the responses I realized that our decisions really depend on our particular needs and quality of life. My #1 priority is not quality of life (QOL is #2) - #1 is to stay alive as long as possible. Not so much for myself but because I have three children in elementary school. They need their mommy and I want to be around to see my kids graduate high school and go away to college. I'm also getting close to menopause (i'm 50) so I'm not really that upset about getting menopause symptoms. I'm willing to stay on meds that give me mild to moderate side effects if they give me a 50% reduction in cancer recurrence. My oncologist told me that my risk of recurrence is 8% if I take a hormone med and about 16% if I do not. If any of us get a distal recurrence, our chances of survival are only about 25% in 5 years. I will tolerate side affects to stop that from happening. I just can't tolerate severe side effects because then I'm miserable and my whole family is miserable.

Pjaye - We have many similarities. I also have lupus and sjogrens. I also had 2 cancerous tumors that were a few centimeters apart. I had a myomectomy a few years ago to take out a huge fibroid - I had the non-laproscopic type and it was a bear of a surgery. I was sick for months afterwards. I respond badly to general anesthetic and if often throws my whole body off and flares up many of my chronic conditions. I also had a surgeon that made a serious error - the need for my second surgery was solely due to surgeon error. What a nightmare. At least she admitted it. I got a personal apology from her and from the medical director at the hospital where she worked. That's nice and all but not it doesn't take away from the suffering I had to endure from a second surgery. Don't get me going on birth control pills - I hate the way they are prescribed like candy for things like "regulating your period" when they are a known carcinogen. I'm sure they had a lot to do with my getting cancer and all the other tumors I had removed over the years.

In terms of the Mast cell dysfunction you asked about - what I have is called Mast Cell Activation Syndrome (MCAS) and its a fairly new diagnosis and not known by that many medical professionals yet so its hard to find people who have heard of it. I had to look for a while before I found competent docs who could treat it. The main symptoms are allergies/sensitivities to medications, foods, temperature changes (I get hives from heat), and other random things, flushing and rashes like chronic hives, and GI problems. Its believed that our mast cells are overly sensitive and sound the alarm from benign things like fragrances, physical changes (like heat, cold, friction) or certain foods - this causes a cascade of reactions to occur and mast cell mediators like histamine to be released. These mediators cause inflammation and the symptoms described above. Right now the diagnostic criteria are symptoms across two bodily systems (e.g., skin, stomach), a strong positive response to histamine blockers or other meds that block mast cell mediators, and abnormal labs (blood or urine) on at least 2 occasions. They usually look for elevated histamine, prostaglandin or other mast cell mediators. I found out about MCAS almost by accident after I was diagnosed with a genetic condition called Ehlers Danlos Syndrome MCAS is a comorbidity associated with it and I have that in addition to another comorbidity called Dysautonomia. The "trifecta" as we call it is very difficult to live with and requires so many lifestyle modifications that it makes ones head spin. I have to follow a very strict gluten free, dairy free, soy free, low fructose, low FODMAP diet, I have to get light exercise every day, avoid every type of exercise other than walking, and juggle a total of 25 active health conditions at the same time. Somehow i was doing it and getting by each day and then I got cancer. Three surgeries later and then adding tamoxifen to the mix has made life really difficult.

I will keep you all posted about how the aromatase inhibitors go. I start them in 6 days along with a shot to stop my ovaries from working. Ugh.

I hope you all have a wonderful holiday. Merry Christmas and Happy New Year!


Dx 5/2/2018, IDC, Left, 2cm, Stage IIB, Grade 1, 2/12 nodes, ER+/PR+, HER2- Surgery 6/13/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/19/2018 Lymph node removal: Underarm/Axillary Hormonal Therapy 7/31/2018 Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 23, 2018 06:52AM dtad wrote:

Happy Holidays 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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Jan 25, 2020 04:35PM Ms_Anthrope wrote:

I have Ehlers Danlos, POTS and mast cell issues, plus lots of drug allergies and a glue allergy too. I've opted out of hormone therapy because drug side effects are just too extreme for me. I'd rather have a decent QOL...

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Jun 21, 2021 09:00PM barbojoy wrote:

Checking to see if anyone else has autoimmune hepatitis. I am 46 now was diagnosed 2/2019 and it is in remission. I was just diagnosed with IDC and curious if anyone else with an immune system that clobbers their liver has been able to successfully tolerate chemo or hormone drugs.

Dx 6/15/2021, DCIS, Left, 6cm+, Stage 0, Grade 2 Dx 6/15/2021, IDC/Paget's, Left, 1cm, Stage IIA, Grade 3, 1/1 nodes, ER+/PR-, HER2+ (FISH) Surgery 7/28/2021 Mastectomy: Left; Prophylactic mastectomy: Right

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