Breast cancer and MS

Spirit_eyes

About 5 years ago, I was told I had ms. Took the daily shot for it. Seen a new neurologist, who said I was mis-diagnosed. Stop taking the shots, and about 1 year later, I have breast cancer. (not a huge shock. My mother died of it, when I was very young).

Wonder if there's any connection. Anyone in the know want to do a study?

1Athena1

Hello everyone,

It's too ad that this MS thread only has one post. The topic is buried under "
Mixed bc" and that may be why no one can see it.

Sorry for intruding here (and apologies for the fact that is s a repeated post). I have petitioned the moderators to separate the mixed typed of bc threads from the bc and other illnesses threads, since both situations are entirely different. If you agree, read here and post your opinion:

community.breastcancer.org/for...

I am making a perfect nuisance out of myself by being so pushy, but I do feel it is important. Comorbidities create an entirely different bc experience for many of us - one we frequently cannot discuss with others who are not in our situation.

topless

Whoops! I just blundered into this new forum today. Thanks moderaters! I hope that MSR's will come together on this forum. It is very frustrating to find a post pertaining to MS and then not be able to find it again later.



Something that I find difficult when posting on other forums is trying to get across the notion that I HAD breast cancer and cured it with a BMX and now I don't have breast cancer anymore. I still have MS and I continue to deal with this chronic, progressive disease that I can't cure. However the psychological wounds of the whole, horrible experience of dealing with breast cancer are still with me on top of dealing with MS every day.



I wonder if others with MS can relate to this?

Kimberly1965

Yes I can relate. I have know I've had ms for 18 years. But now I'm dealing with IDC grade 3 stage 2 neg on everything but HER2. This is a resent diagnosis. Lymp node biopsy is on Tuesday. I am at a lose and very confused. Angry because last mammo I had in 2010 said I had nothing and was fine. When I went for that one I told them I had lumps in breast same one same place and same one in arm pit now I'm trying to figure out how it could be 2.5cm in two years when they said I was fine. Though this is aggressive. Worried how the ms is going to react to all the chemo and double mastectomy?

Timbuktu

Yes, I think there is a relationship.  Low vitamin D is coorelated with both diseases.

I think the incidence of both diseases go up the further from the equator you live.

My vitamin D level, in spite of taking 2000 mg/day, is low (25).  I've upped it to 4000/day and I hope to get it up.

The sun is supposed to be the most efficient way to get vit D but I live in Chicago and it's January! ;-(

LilliansGirl

Wow I can't believe I found this thread.  I am new to the site just looking for some info. I am lost in the world of medicine and don't feel that anyone really gets it.

I have gone for yearly mamo's since I was about 19 and for the past 4 years both mamo & US.  This past May something showed up on my US so they had me go again 6 months later.  About the same time I was diagnosed with MS.  Not to mention the year before that Narcolepsy...jeez does it ever stop.  I really feel that they are all in some way related.  Anyone have any insight into this? Any comments at all would be most appreciated.

LG 

Moderators

Welcome LilliansGirl.... we are sorry that you have joined our club, but you have landed in an incredible community. 

We are thinking of you, and wishing you much support here. 

Your Mods

Jelson

There is an existing thread, multiple sclerosis and breast cancer, on the DCIS board - there may be some helpful info there. maybe those posters will migrate to this thread.

http://community.breastcancer.org/forum/68/topic/727917

Beckers

I am from other thread. We will all make our way over I am sure. I was diagnosed with MS in 97. Thought close to being benign. I do have fatigue, flare ups, and about one exacerbation yearly. I no longer take injections. My MO recently told me Tamoxifen can make MS worse. That is worrisome. My neuro wants me back on injections but I'm fearful and the MO and neuro keep deferring the issue to each other so I don't feel like anyone knows what to do for certain. I know I don't so I'm just hoping for best!!

Stanzie

Beckers, can you take Copoxone? I don't know what the drug interactions might be but when I was first diagnosed my neurologist said he didn't think I'd have to go off the injections.. But I ended up not taking those drugs because of MS... for me my oncologist said the risks for me were not worth the benefits- of course I was to do on the post menopause drug.

Anyway, glad I found this thread!

Beckers

Hi Stanzie. My neuro wants me back on Copaxone. It was really tough on my tissues. I would get welts the diameter of a tennis ball and it atrophied tissue so I have dents. Avonex SEs are so hard to deal with. I'm really undecided, but I have had worse problems the recent months since BMX or Tamoxifen or just cause. Who knows. Ha! My neuro told me to ask MO if Copaxone okay and MO said to ask neuro. So, tells me neither one knows for sure. My MO did tell me Tamoxifen can worsen MS though. Crap shoot I guess.

chef127

Hey fellow mser's and bc girls,

This forum is so quiet that I'm assuming you are all doing well. I hope that is the case. I'm dealing with the crap shoot ideas of both. Like Beckers drs, my neuro and onc don't have the answers, and neither do I. I did start the copaxone about 7 mos. ago, out of fear of progression but do I really want to supress my immune system? Don't we need it to fight the BC? And the anti hormone drugs, well my BC didn't show its ugly face til my hormonal levels started to drop and the MS started to progress at the same time. Maybe its just a coincidence??????????Which one do I treat?

I do not take the AI's because the side effects could make the MS symtoms  worse(not to mention cause my diabetes to get get worse)  and at the same time, there's nothing to prevent the estro from feeding the BC.   I am reluctantly taking copax because the MS has progressed and caused me to become disabled. Mostly my eyes(nystagmus and double vision) and mobility issues. I have an appt with my neuro next week and I'll ask IF there is tx that doesn't suppress the immune sys. Do any of you know of a tx?

I don't want to ignore any of these f-ing conditions but the tx's seem to conflict.

I hope you are all coping and dealing with both these life altering shits better than me.

Enjoy life and DANCE.........Maureen

NewHopeAndrea

This is a little bit of a vent so please forgive me.  I have had a trying week.  I do know the importance of staying positive and not getting stuck in bi*ching  but it seemed like others in this thread could relate and it was a safe place.   

I took the daily shot also, since MS diagnosis in 2002.  After Stage 3C diagnosis in March, my MS doctor took me off it for duration of cancer treatment.  Turns out from my subsequent research that all of the immunosuppressive drugs are correlated with increased rate of BC.  I was fearful of the interferons doing this but did not realize the "C" drug was so associated ... I do not recall any disclosure at time of MS diagnosis that this treatment increased my BC risk.  Yet it seemed so important to control the MS.  Except now that I have cancer, we're just bagging the MS treatment?  I went through a series of personal issues including divorce, moving, wayward teens, etc. and didn't get a mammo for 4 years.  Whoops. 

I feel like having MS is such a big adjustment, with the fatigue and gradual losses of capability for me although without major exacerbations.  Now I guess I am supposed to cross my fingers that I won't have an MS relapse while trying to survive my cancer.  It is definitely a double whammy. 

PATIENCE is so important with all of it, and it's not one of my best things.  I do my best with loved ones but my daily experience is quite frustrating to me after 6 months of BC treatment.  Last week I had reconstruction and next day got on my riding mower.  WHAT???  I put myself at serious risk.  I have paid in pain, extension of drain time, and hopefully no worse consequences like losing the implant, etc.   I think my patience with "no you can't" was just GONE for that day, but it was a childish stunt.  Think I learned my lesson though! 

I send my best wishes and I do want to share positive experience, strength and hope with all of you.  Also whatever research we can share to make the best of our various treatments and their effect on our other health conditions. 

chef127

NewHopeAndrea,

Welcome. What a horrible place to be. Go ahead and rant, rave, bitch, yell, scream, cry, then take a deep breath and realize what a strong woman you are. BC SUX...MS SUX more. Both are unpredictable so we never know what comes next. How do we treat one without compromising the Other? I hate this.

There is another thread on BC and MS. Its not very active but you can join us there as well and rant in both threads.

Stay strong.........xoxMaureen

chef127

Multiple Sclerosis and Breast Cancer in the DCIS forum...........see ya there. or here

NewHopeAndrea

Thank you!  I feel like I sort of barfed up my negative feelings in my last posting here and after that, and a good night's sleep, I am feeling much more upbeat and mentally balanced today.  Purged it for the moment, I guess.  I wish all the strength and hope possible for the rest of you on this forum, who are dealing with the challenges of these 2 diseases.  I am going to do some more research today on these issues and if I get anything that looks useful and reliable, will pass it on!  Thanks for understanding, sisters! 

Anonymous

I was diagnosed in 2010 with BC from an x-ray of my back after breaking it in two places after being thrown from my horse.  I was pretty lucky since I had had a mammography three months earlier and the BC was not detected.  After 6 months chemotherapy and radiation, I was diagnosed with MS the day of my last radiation treatment.  I've been taking Copaxone ever since.  My third year anniversary is coming up and the anticipation of receiving bad news always makes me anxious when I go to see the doctor for my 6 month check-ups!  I try not to think about it but it hides in the dark corners of my mind...  

 

chef127

Pasofino222,

Thats rough. Going through all the BC tx and finishing up with "You have MS". I hope your back on the horse. For me my MS took a back seat and I concentrated on tx'ing the BC and now trying to treat both. MS has progressed and the BC is under control, for now. I don't think there is much my neuro can do for my MS except the Copaxone which MAY slow the progression. IDK, and niether does the med community?????? I'm looking into starting LDN.

Hang tough b/c we can live with both. We have no choice.

Soooo.........Get up on your horse and live a good life and fight a good battle!

Maureen...xox

Anonymous

Sad to say that I only have four of my twenty-five purbred paso finos left to sell.  The BC really questioned my mortality and I didn't want to "saddle" my non-horsey husband with a herd of horses.  My earliest memory on a horse's back was when my grandfather would babysit me while he culivated corn.  As a three year old, I'd ride one of the work horses that pulled the cultivator.  I bred, raised, and trained horses for over 30 years.  After breaking my back, I realized that the smart thing to do was to "retire" from riding a horse!  Besides maybe that is why I was ejected from the saddle in the first place, my balance just isn't what it use to be!  I would have never been tossed off in my earlier days!

My husband has been awesome though!  He knows that exercise is important and so instead of riding a horse, he purchased a tandem bicycle for us!  I don't trust myself on a single bicycle anymore either.  I crashed on my road bike on Mother's Day, 2 months before I was diagnosed with MS.  Now we ride around 200 mile per week on the tandem. I still love the feel of wind in my hair.  And still trying to be tough but miss my horses!

chef127

pasofino222,

Its a shame that we need to give up so much of our lives out of fear of a premature casualty. When I was first dx'ed with BC I started to give away my possesions and cleaned out my home so I didn't leave all my 'shit' for my kids to sort through and toss. After the MS left me disabled I could not handle the house, lawn mowing, repairs, etc. I sold it and downgraded to a 1 br apt that I love. I gave up my love of cooking and creating in the kitchen b/c I realized I did it for everyone else, Friends, family, and the public. I live alone now and limit cooking to holidays and occasional dinner parties for friends but even that is overwhelming for me now. I gave my bike to a friend and I'm thinking about a three wheeler (tricycle) like I had when I was 5.

I love that you and your husband (SO) ride the wind. When I was a teen my friends and I went horseback riding but I never got the hang of it. they went giddyup and go and I barely trotted......such a light weight.

Curious, How did you handle all the BC tx and the AI(aromasin) with the MS?

xox

Anonymous

Chef127,

During my treatment for BC I didn't know I had MS.  During the 4 months of chemo, I had severe neuropathy, and crazy electric currents traveling down my arms and back of my legs.  I thought it was a side effect of the chemotherapy or the effect of breaking my back.  I went to the neurologist because I thought I was having problems because of maybe a pitched nerve in my neck or back.  Never suspected MS, never even knew what MS was, until the afternoon of my diagnosis when I went home and researched it online.  

The Amomasin doesn't seem to bother me too much except I am way more arthritic.  I always seem to feel better after I bike, but its hard everyday to make myself get out there and ride.  Last June we did the Bike MS Ride in DeKalb, IL.  We raised almost $1000 for the MS Society.

You show really look into a tricycle but maybe a recumbent one.  We recently joined a bike club. Bicyclists are fun to be around, they seem to be so optimistic!

Mimi8

Hi everyone ,

I'm sorry we are all in this. I have PNP or peri neoplastic  syndrome of the cerebellum after having both IDC breast cancer, mastectomy, chemo, a year of Femara and thyroid cancer and removal. 

Bone scans and PET scans turned up no new cancers.

PNP is very rare. Drs dont  know much about it.  Not MS but is treated like an auto immune disease. I don't take shots.

After a terrible sore throat last August  I suddenly lost the ability to speak, walk and developed down beat nystagmus in my eyes. Physical therapy allowed me to walk with difficulty, talk so that I'm understood and now wear special eye glasses with prisms built into the lenses so I am able to see.  I never needed glasses before.

My MO took me off Femara . I have taken five IVIG infusions that've helped but not too much. My right side is weak and my hands shake. Dr put me on gabapentin a few days ago. MRIS ruled out stroke and a spinal tap ruled out MS.

I'm trying acupuncture on the advice of my neurologist. She is also an MD. Why not try it?

Anybody else have this?

Hugs, 

Mimi8

chef127

Mimi8,

so so sorry your dealing with this. I never heard of this so I did a little research. Wow. Another cancer gift? PNP is hard to understand. Did your drs give you a prognosis? From what I read, when the tumors are resolved the PNP should also resolve?? I hope you get some relief! 

A lot of your sx's  are very similar to my MS. I also have the nystagmus (which is disabling alone) and corrective lenses. MS is not understood by MD's and very little can be done as well. I no longer take any of the so called tx's b/c of the toxic nature of them, so I started taking LDN (low dose naltrexone) non toxic and it may have benefits to slow the rate of cancer growth and keep the MS stable. Hoping.

Acupuncture is worth a try. Too expensive for me. I had 4 treatments at a discounted 75$ per session and 3 times a week were suggested. I hope the Gaba helps. Many MS'ers take it for spasticity.

I wish you peace and wellness!! xoxoxo

Maureen

clarkjennifer

I am sorry to hear all this about you and your mother. I think there is no such relation in all this. No reaserch proofs this.

Msqueen57

Hi All.  I was found to have MS in 2002.   You would think that having one horrible chronic illness would protect you from getting anything else but you would be wrong.  In April of this year I was told I have type II diabetes.  The breast cancer diagnosis came out of the blue.  I was found to have breast cancer in both breast, worse on the left side.   There is no breast cancer anywhere in my family.  I have since learned that there is an English study that found a link between MS and developing cancer, especially breast cancer.   Had a double mastectomy for Invasive Lobular Carcinoma of the left breast and Lobular Carcinoma in Situ of the right breast.  Had three lymph nodes removed on the left side.  Had Oncotype DX performed with a score of 16.  Did not have to have chemotherapy.  Currently on Arimidex with is causing all the usual problems (flu-like symptoms, fatigue, bone pain).  My MS which was very quiet while I was undergoing the cancer treatment has returned in the form of leg spasms which were keeping me up at night.  

chef127

Msqueen,

MS, BC, and diabetes ME TOO. I don't know if MS and BC are related but the DMD's for MS could be related to BC since they suppress the immune system. I do not take them, but high blood glucose levels is not cancer friendly. 2 years before my BC DX I became disabled and  I was so angry that I ignored my diabetes and lost total control of my appetite for carbs and cake, and cookies,and candy etc. I've since got my BG under control. I only take a daily dose of LDN for my MS and try to control cancer with diet and supplements. No chemo or AI's.

I hope you are able to manage all your health problems. It's not fair to have to deal with 3 health problems at once, all of which can be bad. For me the worst is the MS, my diabetes is under control thanx to 4 meds and a better diet, cancer is what it is.

Stay strong and 'healthy'. PM me anytime.

Maureen xox

Sarahlou50

Hello 

I was diagnosed with MS back in 1994 and have been very lucky so far as my MS has been running a benign course for the past 20 years.  I just hope things stay the same (though nothing every does!!).  Was diagnosed with Breast Cancer back in 1999, so the 90's was quite a tumultuous decade for me.  But I did have the best time during my 30's - now I am 50 (and middle aged) things aren't quite as they were, but I am still here, living a full and varied life, working full time and doing nearly all the things I did then.  Life is good!!

Sarah

annieoakley

Hello to everyone, 

I was diagnosed with MS in April of 1999 and have followed a relapsing remitting course. In May of 2012 I was diagnosed with breast cancer and underwent a lumpectomy. This lead to the discovery of extensive DCIS which lead to a mastectomy in August of 2012. Pathology results found lobular features which the surgeon said put me at increased risk for cancer in my other breast but that tamoxifen would reduce that risk. In September of 2012 I started tamoxifen but still felt uneasy about my right breast. In February of 2013 I had a mastectomy on my right breast with placement of a tissue expander as I had done on my left breast. 

I healed very nicely from the surgeries and felt I had done well since I did not relapse with my MS (something the anesthesiologist told me could happen). In the midst of all these surgeries I was having other problems which lead to the discovery of a rather large mass on my left ovary. Because my breast cancer was er+ it was felt I should have my ovaries removed.  I had an oorpherectomy in June of 2013. Omg enough surgeries already! Thankfully the pathology came back negative for cancer. Now I just needed to have my exchange surgery of my tissue expanders for permanent breast implants. This surgery took place September 2013. That's it I thought, I could put it all behind me, I'm done with cancer.

Not so fast, in May of 2014 a back ache sent me to the doctor which lead to an emergency cat scan. She feared a blood clot but instead they found what looked like a bone met in my sternum. In September of this year bone metastasis was confirmed with three other areas when I was re-scanned. I have also just learned I have a rather large hole in my left humerus requiring surgery to stabilize it followed by radiation. I am now Stage IV and I can definitely say this is affecting my MS! I did not expect this, I felt I had done everything I needed to do to stop this from happening and yet here I am. I am currently taking letrozole to keep the cancer at bay and having infusions of pamidronate once monthly for my bones.

Thanks to the help of the many women on this forum I am slowly learning to accept this new chapter in my life. It's been a hard journey but I am not giving up, I will continue to fight. 

Wishing the very best to all of you

Hugs, Annie

labelle

There does seem to be a link between breast cancer and autoimmune diseases, including MS, as well as lupus, Hashimoto's (the autoimmune disease I'm also blessed with), etc. I know from my own research that persons with Hashimoto's as well as persons with breast cancer tend to have low vitamin D levels. Someone else wrote that is also true of persons w MS.

Personally, I wish I'd taken a lot more care to be sure my vitamin D levels were normal. They were extremely low for god only knows how long. I tend to believe low Hashimoto's (and maybe other autoimmune diseases) cause low vitamin D levels and low vitamin D contributes to breast cancer risk. I know my vitamin D will continue to be tested and I will continue to supplement as needed to make sure it is never again low and I will continue to bug my daughters to have their vitamin D levels checked every year.

Msqueen57

Hello all:

My RRMS was mostly quiet during breast cancer diagnosis and surgery. Saw my Neurologist three and 1/2 weeks ago and he commented how surprised he was that my surgery in July (double mastectomy) didn't trigger an MS flair. Three days later I woke up with legs that felt like concrete. after two weeks of no improvement I called my Neurologist and was placed on a steroid dose pack with insulin in case my blood sugar gets too bad.

Rethinking that decision as I have felt worse on the steroids. Hopefully they will shorten the flair since I have five doctor's appointment next month, two dealing with cancer follow-up. Hey, at least I can walk and did not need hospitalization. I the meantime I am resting in bed. 😢😢

ShellyJ

Hi All - I was diagnosed with Stage I bc in 2008 then Stage IV bc with mets to bone in 2013.  At the same time I was diagnosed with Stage IV bc I was diagnosed with MS.  My father had chronic progressive MS and my brother has relapsing remitting MS.  I am not on any treatments for MS as my neurologist does not want to mess with my immune system.  Hugs to all!