On top of MS- Breast Cancer

[DonnaD]

Not sure what sort of answers I'm looking for now. I'm 45 yo, have MS 20+ years. Now I'm almost positive that I have breast cancer too. Mammogram will be in 2 days but my family Dr felt the same lump that I did and seems pretty sure too. I'm also getting pains where the lump is that feel like bee bites (also a sign)... So I can pray and hope before the mammogram but I know I'll have to face reality.

I'm not so afraid of the breast cancer. Hopefully I caught it early enough to be cured. I'm afraid of how it will affect my MS. I know that anytime that I've been sick with any regular illness (fever, infection... whatever), all my past MS problems get worse. Suddenly I can barely walk (I walk not great but unaided now), trouble seeing (I've had problems during flare ups but overall it's OK now)... I just see my whole body falling apart either from the illness (cancer) or from the attack of the chemo.

I didn't talk to my neuro - seems silly to call him and say I'm pretty sure that I have breast cancer.

Anyone here ever have to deal with this?

[kelm10]

been there done that

I, too, was in your shoes.

I knew that the breast cancer diagnosis was coming. The delay in my results and being sent to Mayo clinic "because one of the pathologists was on vacation" was a line of crap.

In the ladies room section of the message boards one of our members who is not active right now did a wonderful job of writing several parts of her journey with breast cancer. Mermaidsusan did a couple of great posts, too. so look in that section, on top of following the link.

Here is the link. http://www.msworld.org/forum/showthread.php?t=124493

Mine is buried deep in there, too. But, poohbar and Mermaidsusan did such a fantastic job.

Hang in there and welcome to the journey.

My email is in my profile. If you are interested in a contact for a MS and cancer support group that does a monthly phone meeting you can send me an email.

[Dale76]

Not sure what sort of answers I'm looking for now. I'm 45 yo, have MS 20+ years. Now I'm almost positive that I have breast cancer too. Mammogram will be in 2 days but my family Dr felt the same lump that I did and seems pretty sure too. I'm also getting pains where the lump is that feel like bee bites (also a sign)... So I can pray and hope before the mammogram but I know I'll have to face reality.

I'm not so afraid of the breast cancer. Hopefully I caught it early enough to be cured. I'm afraid of how it will affect my MS. I know that anytime that I've been sick with any regular illness (fever, infection... whatever), all my past MS problems get worse. Suddenly I can barely walk (I walk not great but unaided now), trouble seeing (I've had problems during flare ups but overall it's OK now)... I just see my whole body falling apart either from the illness (cancer) or from the attack of the chemo.

I didn't talk to my neuro - seems silly to call him and say I'm pretty sure that I have breast cancer.

Anyone here ever have to deal with this?

You should do some research on "Rick Simpson oil", there are a ton of success stories related to it.

Several doctors are now speaking out against chemo due to it's extreme side effects and ultra low success rates.

[DonnaD]

Thanks for the link - TTYTT, It got me more nervous now. I don't really know that much about breast cancer (never thought I'd have to). I guess I have to wait for the Mamo and the Dr to tell me how advanced it is and how they'll treat it.

Years ago I was part of a Copeaxone test group. They sent me for all sorts of tests for their use and one was a mammogram. For some reason, the first reading wasn't clear so I had to wait in the waiting room to redo it. Most people would get nervous when they say there's a problem. I was super calm. I thought - I have MS, I can't have breast cancer too - guess I was wrong. You can have two things .

I've been waiting a month for this appointment for a mammo!! One of these mess ups. Also the Dr on vacation for a week. Then next emergency appointment a week and a half later. Then there's no Dr that day so they pushed it off another week!! And then I'll only see the Dr the next week. I really hope this extra month wait didn't really harm me.

I'm really worried about being really weak. Last year I had some fever. I was so weak that I couldn't lift myself off the floor. (in general, I do walk and can get up).

Sorry, I'm sort of babbling here. I'll be smarter next week.

[Jennagain]

So sorry you are going through this Donna. I am constantly struggling with other health issues, not as serious as you or others, but I find that alone can be trying. It's hard enough to struggle with one thing, but dealing with multiple stuff is very trying.

I have had a multitude of so far insignificant things over the last several years, but the constant tests and medical appointments is tiring. Some days I get angry because I seem to have so many health issues, yet I live such a healthy life (don't drink, smoke, stay active, eat well).

A couple of years ago there was an abnormality on one of my mammograms. I was called back multiple times to have it checked (mammograms and ultrasounds). The radiologists could not seem to decide if it was OK or not. In the end they said it was benign, but should be watched.

Recently I tried to get a new life insurance policy and I was denied. Go figure!! They did not like my neuro problems and were also concerned about the abnormality on my mammogram. Actually wrote to my GP and suggested I have it re-checked. GP sent me to a surgeon and off for another mammogram I go.

I hope and prey you are only dealing with a simple cyst and nothing more. Please write back once you have the results.

[Temagami]

Sorry that this major worry is on your plate. Could there be a silver lining of the chemo resetting your immune system?
Isn´t that what some of the therapies do for MS; chemo to reset? If you do have it, you might want to designate someone in your family to log onto ACOR.org. It is an amazing site that has list serves for every kind of cancer. Most members are NOT the patient, but rather a loved one. It gets a bit intense if the patient is wading through all the info and getting to know others who have such struggles. Better to let someone else do the research for you. The site was started by a man whose wife had breast cancer and it is amazing in terms of its support and up to date research. It´s like having access to every specialist in the country b/c members are from all over and are generous in posting.

[DonnaD]

Could there be a silver lining of the chemo resetting your immune system?

That could happen?? What would really happen? Since I started Tysabri 3 years ago I haven't had any exacerbation but it doesn't help if I can't rebuild the myelin. What's gone is gone. Right?

The thought of more and more Doctor appointments is keeping me up at night. I stopped driving a few years ago and getting places is always a story.

[Kimba22]

That could happen?? What would really happen? Since I started Tysabri 3 years ago I haven't had any exacerbation but it doesn't help if I can't rebuild the myelin. What's gone is gone. Right?

The thought of more and more Doctor appointments is keeping me up at night. I stopped driving a few years ago and getting places is always a story.

Hi Donna,

I'm so sorry you are faced with a new worry. I really hope you don't have breast cancer. Just having MS is more than enough.

Chemotherapy is a strong immunosuppressant that significantly lowers white blood counts, which is what dampens MS activity (reducing the number of b-cells and t-cells that attack our myelin).

Cytoxan (aka Cyclophosphamide) is used for both breast cancer and MS.

The dosage typically used for MS is smaller than the dosage used for cancer. There is a also a treatment called HyCy therapy (involves consecutive days of treatment w/ a higher dose of Cytoxan) that there was a buzz about a few years back, but haven't heard much about it recently.

Here are a few links for you:

http://www.webmd.com/multiple-sclero...ytoxan-therapy
http://www.breastcancer.org/treatment/druglist/cytoxan
http://www.cancer.org/treatment/trea...clophosphamide
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3555191/

Good luck. Please update us once you know more.

[jessiesmom]

Breast Cancer and MS, too


I was diagnosed with MS about 10 years ago and was put on Rebif. About 5 years later I was diagnosed with triple negative breast cancer. It was not the easiest diagnosis due to an unusual presentation. I had a mastectomy on the right side and then had 16 rounds of chemotherapy. I had 4 rounds of Adriamycin/Cytoxan and 12 rounds of Taxotere. I was given Taxotere rather than its cousin Taxol specifically because of the MS. For the first few rounds of chemo I even continued on the Rebif! It was my personal decision to take a Rebif break while I was on chemo. Neither my neurologist nor my oncologist had a problem with that. I had a lot of chemo side effects but I cannot attribute any of them to the MS. Some are hit hard by side effects and some are not. I had no MS flares/relapse/exacerbations during OR after chemo was over. I count myself very fortunate in that regard. My last round of chemo was in August 2010. I have been in remission since then.

You should be aware that a mammogram will NOT tell you how "advanced" a cancer is. Further diagnostics would be necessary. First of all you would need a biopsy to determine if the lump is even malignant.There are different types of biopsies. Many women also undergo a sentinel node biopsy, breast MRI, AND a PET/CT scan. You are jumping the gun by assuming you have cancer. Once a diagnosis is actually made you will get an education you wish you never needed. Like we say in the MS world "Knowledge is Power."

The American Cancer Society webpage has a tremendous amount of information on the subject of breast cancer. I would suggest that you go to the Cancer Survivor Network portion of their page - more specifically go to the discussion forum for breast cancer.

I would be happy to answer any questions that you may have. Been there. Done that. Survived.

[Justsayyes]

I've read your post a few times, unsure what to really say to help you. Everyone's cancer experience is specific to them, just as our MS acts differently for each of us. It is easy to jump from place to place thinking about what if's.

I can tell you that I had a lumpectomy for ductal carcinoma in situ, which fortunately is a stage 0 cancer. None the less, I was still advised that I could be as conservative or aggressive as I felt I needed to be. That shocked me a bit, why would I need to be so aggressive?

I opted for a lumpectomy and radiation. I did very well thru all of it, never even had much fatigue from the radiation. I guess I am saying you just don't know how treatments will affect your MS. I wouldn't jump to a chemo conclusion either. That is not always what is called for.

There are so many variations to breast cancer. Mine calls for taking a estrogen blocker, or SERM. I chose Evista, similar to Tamoxifen, and feel really good on it.

I'm so sorry you are going through this, it is a knock you down stressful time for you. It gets better when you know what you are dealing with and can move towards your cure. Please let us know how you are doing through this.

[loopey]

Me Too

I actually had the breast cancer 1 year before I was dx (though I already had MS for years before dx). I had an ultrasound that found the lump. I could not have a biopsy because the lump was too close to my breast implant so a breast MRI was done. It still didn't look good so I went to a surgeon for a lumpectomy. Before the surgery he had me injected with something radioactive that would go to the sentinal lymph node and when he did the surgery he sent the lump to the lab.

It was malignant and so he removed the lymph node and it was clear.

It was stage 1 and he suggested radiation but since he said that he had removed the entire lump with good margins, I did not do radiation.

I have breast ultrasounds every year and have been cancer free since then. Everyone has to chose their own course of action and I pray that you don't have breast cancer but if you do that it was caught early like mine was.

Please let us know the results.
With love and prayers.

[andi b]

I think I would let your neuro know

I had breast cancer in 2000 and was diagnosed with MS in 2010... so 10 years in between (I might have already had MS and didn't know it). I was stage 2 with 2 lymph nodes positive, didn't have to have radiation, but did 6 months of chemo. So far after almost 15 years, I'm still cancer free (fingers crossed).

The reason I would tell your neuro is that if you are on any of the DMD's (like Avonex or betaseron and maybe others as well) that can mess with your blood counts he should be aware of that. The chemo did a real number on my blood counts and I ended up in the hospital with some sort of infection that was really awful.

I was also extremely fatigued from the chemo and I would imagine the fatigue could be even worse with MS on board. Good luck on your journey.

[MermaidOP]

Breast Cancer and Me

Dear Donna and my other sisters on the same journey,

Here is the complete list of the Breast Cancer & Me threads that kelm mentioned, in which several of us, women with both MS and breast cancer, told our stories.

BC&M The Beginning Pt1
http://www.msworld.org/forum/showthread.php?t=123306

BC&M Biopsy & DX Pt 2
http://www.msworld.org/forum/showthread.php?t=123386

BC&M Decisions Pt3
http://www.msworld.org/forum/showthread.php?t=123521

BC&M Surgery Pt 4
http://www.msworld.org/forum/showthread.php?t=123891

BC&M sorry for long delay
msworld.org/forum/showthread.php?t=124493

BC&M Recovery Pt 5
http://www.msworld.org/forum/showthread.php?t=125548

I am cancer-free for almost three years now. Good luck to all of you.

Stay lifted,
Susan

[DonnaD]

Thank-you everyone for the tips and prayers. I went for the mammogram. The lump was very obvious so I went on for an ultrasound. I asked the technician if the lump was relatively large. She said - We don't know for sure what it is yet (very smart of her to not give me any answer yet). Tomorrow I'm going for an appointment with the Dr and a biopsy.

I now live in Israel where we have socialized medicine. (I don't pay a cent for my tysabri nor for the IV treatment ). My neuro and IV's are in a hospital that has an MS center. The breast testing and treatment will be in a different hospital which has a breast center. Will this Dr call my neuro? I mean is it obvious that he has to speak to my neuro? Do the two treatments have to be coordinated?

What can I say... I'm tired of being sick. I have no energy to deal with another problem. And I don't want to read lots of info and make decisions. I've settled into life with MS (have it 29 years). Once a month my husband takes me for my tysabri. I don't drive (anymore). Four of my kids drive already but they're busy too. My kids are great. They help. They'll go shopping or take me. They help at home... But I hate being more of a burden to everyone. And I'm terrified of telling my mother or anyone else.

OK - That was my Kvetch for today. In general I'm an upbeat person. Tomorrow I'll know more of what's going on.

[dyin_myelin]

Good luck Donna, I hope it's just a cyst.