Addison's disease and breast cancer - anyone else?

TessaK

I have Addison's disease (my adrenal glands do not produce cortisol and some other hormones, so I take cortisone daily) and wondered if there is any one else who has Addison's disease and breast cancer?

Thank you.

TessaK

DX 4/11/11 cancer in both breasts.

Right - DCIS, HER-2+,12mm, grade3, stage1, lumpectomy, re-excision, Herceptin.

Left -   LCIS, ER+,PR+,3mm, grade1, stage1, lumpectomy, chemotherapy, further surgery necessary.

perky

Me! I have secondary Addison's as a result of Cushings disease..my adrenal glands were removed. Haven't had chemo but my steroid dose hasn't changed through surgeries, fills, meds etc.

TessaK

Hi Perky

Thanks for replying! I have started chemo, and was given very high doses of steroids for the first 3 days, as I understand everyone is. I continued with my normal dose as well, and then weaned down. All the best to you.

TessaK

perky

Hope treatment goes quickly for you.

dew55

Hello perky and TessaK.  I'm wondering if you might be able to share your outcomes thus far and your experiences with breast cancer and Addison's?  My mother was just diagnosed with breast cancer and has been living with Addison's for several years now.  Given her past history of immune system issues (lingering colds and other sickenesses, extreme reactions to poison ivy, etc...) we are concerned about how she might be able to weather what is ahead of her (likely surgery, chemo, etc...).  She s 59 and is in otherwise good health. Anything you might be willing to share would be appreciated! Thank you!

LLL55

Hello dew55, I have been reading these boards for the last year and they have been so helpful. When I saw this topic I wanted to reply. I too have Addison's have had it for over 30 years. It is well controlled. I am 56 and had a lumpectmy and a mastectomy. The only problem I had was I got dehydrated from the surgery. Just make sure the surgery is early in the morning. The recovery and reconstruction have been no problem at all. Wishing you and your mom all the best!

dew55

LLL55, Thank you so much for the response!  As you can imagine, finding information on experiences with the combination of breast cancer and Addison's is pretty pretty difficult, so I am very appreciative that you were willing to share your experience and advice.  I will continue to post here as it would be good for this thread to serve as a resource for those with this somewhat rare set of circumstances.  Thanks again!

Jburke

I was diagnosed with Addison's three years. One year ago, I was diagnosed with invasive ductal carcinoma. I have had lumpectomy and irradiation. For the past nine months, I have been taking herceptin as an infusion every three weeks. Unfortunately, I have had multiple side effects from the treatment. Before each infusion, my doctor gives me the max premeds to help me with the side effects. Fatigue that never goes away has been a huge issue. When a person has Addison's, fatigue becomes a part of your normalcy. I can't distinguish between the fatigue that I have with Addison's and the fatigue that I have with the Herceptin treatment. My oncologist doesn't seem to have any input or ideas as well. There are so few Addison's patients that it makes it difficult to find answers to any type of question when referring to the Addison's and the other treatments.

I was on a hormone treatment, but the side effects continue to plague me and the doctor has postponed that treatment until I finish the Herceptin.

From my experience, I think that having cancer treatment when diagnosed also with Addison's, makes the journey a bit more complicated and difficult.

Has anyone else been faced with dealing with cancer treatments and Addison's? What has been your experience? I feel like there is no one to really talk to about these issues. I hope that through this message board, that I can find someone who has been facing thesetype of illnesses.

Jburke

TessaK, how did you fare with the chemo and Addison's? I have struggled with my Herceptin and hormone treatment with so many side effects. I feel that the Addison's has weakened my immune system making me more prone to the side effects. Did you find that to be true as well?

Moderators

Dear Jburke,

Welcome to the community. We are so glad that you reached out here but sorry to hear about your struggles. We notice that there has not been recent activity on this particular topic since 2013. You can try messaging members through a private message or you may want to start a new topic to revive the discussion. Keep us posted. The Mods

Jburke

I found out after 3 infusions of Heeceptin, that the large amounts of steroids given to me for the pre-meds really messed up my dosage of hydrocortisone. With the pre-meds and my hydrocortisone, I felt like the "Ever-Ready bunny" in battery commercials.

I called my endocrinologist and asked his nurse for a lower dosage pill. 30 minutes later my endo drcalled and told me that I needed to omit my regular dosage of hydrocortisone the first 4 days after a treatment, but start back after 4 days. After 10 infusions, I have needed to start my hydrocortisone 3 days after infusion. My endocrinologist strongly stated to me that I must not cut back on the dosage. He was most emphatic about that. In fact, he feels I need to up the dosage to 30mg per day. I have only increased to 30 on days where stress was high or I had an exceptionally difficult day.

The max dose of pre-meds before the Hercptin infusion is because I have so many of the side effects. This problem of the multiple side effects perplexes my oncologist. I think I am his first Addison's patient. . Looks like I am his guinea pig. I feel that my oncologist should have consulted with my endocrinologist before the post surgery treatment began. No one doctor knows all, and each should be willing to learn. This experience has disappointed me in my oncologist.

MrsD

I can't believe I've finally found others w/ both Addison's and breast cancer! Lordy, no docs I've met have ever encountered the two together. I was diagnosed w/Addison's when I was 18; am now 50. As time goes on, I'm more fatigued, and have difficulty exercising, starting new projects, and doing much that requires more activity than sitting in a comfy chair with my feet on the ottoman.

I'd like to hear what other Addisonians are doing for energy. Because of my estrogen-positive BC, DHEA and other supplements are out. Caffeine, sugar and salt only do so much. The muscle-wasting is frustrating, and the inability to just get up and go is debilitating. The docs have no new ideas.

If you've figured out this energy thing, I'd love to hear about it. Addisonians unite!

RenHarvey

wondering if I can discuss with you about doing chemo and having addisons ? I am writing for my mum ... she is going to TRY a low dose pill form chemo in Dec ... and we are alll concerned how her 70 year body and addisons will or will not cope? if you get this respond and I will send you my email if thats ok?

Moderators

Hi Renharvey-

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Kathykd

I have had addisons for ten years and was diagnosed with breast cancer last week. so far my addisons seems to be under control except for my salt levels. I feel like I had a fight ahead of me too. I wish you the best of luck with everything.

Moderators

Kathykd, and we wish YOU luck with everything. You'll learn a lot here, and know are all here for you. You may also want to use the Search box on the left and type in "Addisons" to see if you find any other thread or member.

Hang in there!

TEW-61

me !!!!!!! I've had a hell of a time !!!!!! Anyone out there going thru it right now ???? I’m done with the tax and carb. But still have 12 more Herceptins to do plus radiation. I’m scared. I’ve had a really hard time although the doctors say Herceptin doesn’t have as bad of side effects - but they’ve never had an Addison’s patient either !!!!!!!

TEW-61

I finished the radiation - but not without the Addisons complications. Just had my third dose of Herceptin - feeling so weak - please tell me it will go away and I'll have a week of feeling good in between treatments. Just don't know how much More ican take sometimes.

TEW-61

I too am having low sodium levels - I'm only on Herceptin and thinking of stopping treatment. My endo is having a rough time keeping them normal. I'm on extra steroids sodium tablets and restricted fluids also have been in the hospital several times for it. Please tell me about your outcome.

Krose53

I have Addison’s. Diagnosed 20 yrs ago. Is anyone with Addison’s and post menopausal? If so are you on and AI? Do we need to be since our adrenals aren’t producing androgens that convert into estrogen

Krose53

Hi, I'm 64yo, diagnosed with ILC, tumor 1.6cm and 2 nodes positive. ER/PR+ and Her2 - I had a bilateral mastectomy and chemo, no radiation. I'm on Femara x 3 months. I asked my MO that exact same question but she didn't have an answer. Have you asked your endocrinologist? Someone must know.