Anyone With Autoimmune Disease?

BUNKIE10

I am newer here but was wondering if anyone out there has autoimmune disease and how all this affected it. I have Sarcoidosis and have some concerns about rads and after care. Getting through surgery was bad enough but I made it. I am currently taking 5mg of prednisone daily to control my disease.

Moderators

Hi Bunkie and welcome to Breastcancer.org,

There's a forum here that could be helpful to you in finding others with a similar diagnosis. The Mixed Type Breast Cancer or Breast Cancer with Another Diagnosis forum is a place where others with breast cancer and another condition (many with autoimmune diseases) meet to exchange experiences.

Hope this helps!

-- The Mods

BUNKIE10

Thanks I will check it out. Was not sure where to look.

dlb823

Bunkie, there have also been other threads here on this topic, although maybe more of a roll call of who had been dealing with an autoimmune disease when dx'd with bc, rather than a commentary on the affect of bc tx on their pre-existing condition.  I've responded to a couple of those threads because I'd had an autoimmune condition in the past that had gone away prior to my bc dx, but now that my tx is over, has started to come back a little bit.  My PCP says it just means my immune system is functioning overly well, but others here in the past have suggested that an overactive immune system is a distracted immune system, focused on the wrong thing, so missed the bc.  But I'm sure there's some sort of connection, which I think was the point of the other threads.

Anyway, try using the SEARCH feature to the left and you might find those threads and others with your specific condition, or thoughts on dealing with tx.  No matter what you find here, I would be very sure that you have a rad onc and medical team that is familiar with your condition and has experience with other bc patients with similar issues.  It sounds like a relatively uncommon scenario, and having some experience with patients in your situation would be invaluable in guiding you now.      Deanna   

BUNKIE10

Thanks Deanna,

I put in autoimmune and got a ton of stuff so I will read up on it all day. Had no idea about the search tab. Duh it was right there.

At this point I am going to take it day by day because my disease is a crazy rare one and who knows what will happen. I wish my hyperactive system had fought off the cancer but they say the prednisone I take blocks the immune response so what helps also hurts the body. Go figure. 

RealtorJackie

  I have sarcoidosis and am a bc survivor.  I was diagnosed with stage 4 mets, but my lung biopsy showed I had sarcoid instead!  I just was diagnosed with neuropathy.  The doctor believes it is from chemo and/or sarcoid.

BUNKIE10

Thanks Realtorjack for the reply. I am so scared but am sure it will be ok. I did 2 treatments last week and so far am nauseated, achy, dry mouth, somewhat dizzy and very fatigued. I am hoping it is just my body adjusting to the rads. Can I ask what you noticed with it? 

I was so glad to find someone with my disease. It can be a little crazy at times. I have been on low dose steroids for 6 years. Was just trying to come off when bam...you have cancer. Thank God it was DCIS and stage 0 but I am ER/PR neg. That is not so good because they can not treat me with anything and since I am stage 0 they will not test HER2.

How did your skin hold out? 

RealtorJackie

My skin never opened up.  I aired it out each day.  I used Dove soap,  I used Aquafor liberally each day--including in the dressing room right after rads.  I wore a soft cotton cami over it, and when I had to, wore a loose cotton bra over the cami.

Anonymous

Bunkie I have two friends with sarcoidosis. One of them was healed by prayer, the other was diagnosed in the past couple of years, but neither of them have BC, so I don't know the effects. I have pernicious anemia which is autoimmune, but taking lots of B12 seems to keep that in check. I'm having surgery in 2 weeks and the anesthesiologist told me to take no meds the day of surgery, but to be sure to take the B12.



I know that sarcoidosis can be really tough. My friend, Sue, that was healed, dealt with it for about 5 years before she was healed. Sometimes it took all her strength just to walk to the bathroom & back. Her DH hired a lady to clean their home twice a week.



I wish you well. I'm sure your doctors can find the right treatment for you. BC patients often get steroids too.



Blessings

Paula

gelf

i have had sarcoidosis since 2007.  i had an excisional biopsy in 2006 which should a papiloma on the left.   just got done with a whirlwind 4 weeks of mammograms, mammotone biopsy (atypical ductal ephithelia hyperplasia) and excisional biopsy (1/11/2013) (DCIS stage 3, ER93%, PR 0%)(pT1s pNX).

i already made the appt with the oncologist for next Thursday.  Surgeon said 6 weeks of radiation followed by Tamoxifen...will wait for oncologist's suggestion, but ready for anything BUT a mastectomy!  don't want to lose the tatas!

BUNKIE10

gelf - Thanks for posting. I came through radiation ok. I did have more SEs than normal and they attribute that to the Sarcoidosis. You will be ok. It just takes longer for the healing if your Sarcoid is active. Are you on prednisone? If so you have to up your dose for the surgery. I did not know that several years ago when they removed my gallbladder but this time the dr was prepared.

I hope everything goes well for you next week.