Crohns disease and breast Cancer
I have Crohn's disease and have been diagnosed with breast cancer. I am wondering if there is anyone one else who has Crohn's and has gone through chemo? I am not worried about the radiation, but I am worried about the chemo. I don't know what kind of chemo yet, I will find out on Oct 10th. Thanks
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Hello Peggy and welcome. I'm sorry you have to be here but glad that you found us because this is an excellent site. Full of good information as well as support from others experiencing what you are. I do not have Crohn's but it is in my family. Thus I know something about it and it seems so unfair you have to have both Crohn's and BC. I would suggest that you post your note on the main board as you will be seen by more people that way. I wish you the best of luck with whatever treatment plan your doctor prescribes.
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Hi Peggy G.;
I've lived with Crohn's for 25 years and BC for a month. Had first surgery 4 days ago, chemois uncertain, should know by Wednesday. The stress is already causing issues with joint pain and tummy.
How did chemo work for you? Any issues with Crohn's?
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Hi Quiggy,
I have not been on this blog for quite a while, just finished radiation. I have just been too busy going through all of this.
I had trouble with the first chemo, my crohns flared up. They gave me 4days of infusions of dexamethasone after chemo, and that seems to dot he trick. I had very little side effects, chemo was not as bad as I thought it would be. I then had another lumpectomy, and the margin was clear, so I went on to radiation. I did a brand new protocol, of 3 weeks of targeted radiation, then 1 week of boosts. I did not get anything but pink skin. I used calendula 3 times a day, along with alba moisturizer. I got through everything pretty easy considering that I have Crohns. My crohns has been in remission since the chemo, my oncologist said I could probably stay off of the imuran, but the GI has me back on it.
I hope things go well for you, also.
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it looks like this thread was started a year ago...but just reaching out. I have had Crohns for almost twenty years and was just diagnosed with breast cancer. I will be having bilateral mastectomy this week and don't know yet about chemo. I'm really worried about how this will affect my Crohns. I had a total colectomy with anastamosis 12 years ago and trying to keep my internal pouch. Any suggestions on who in the GI community can give good advice about immunosuppressants going forward
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Hi Jblmom,
Sorry you find yourself here. Over the past year, I found this website site very helpful. Great resource for support! !
My journey has some similar experience to yours.
Dx with crohns at 22 (53 now), had total colectomy at 24 with external pouch. Dx with breast cancer one year ago, lumpectomy with 35 RADs. Multiple complications including inability to heal with multiple surgeries.
However, in spiteof the complications I am now healing. My medical team believe the crohns has been the reason for the complications. More precisely, the autoimmune issues.
We all react differently. I did exhaustive research, my onc did also, there is little information available re crohns and BC. What's clear is there IS a correlation between BC and crohns. Both are immunity issues.
My biggest concern was the aromison therapy for 5 to 10 years. I'm 45 days on the rx and so far so good.
My crohns symptoms have been aggravated so I'm on sulfasalazine again. I don't like to go to the big meds unless I can't manage the symptoms. Seems to be helping but I know it takes a while to calm things down. Again, we all react differently. You may have no issues.
Sending you positive wishes and hugs for your surgery and tx to follow. I'm here if you need to talk or vent. Hugs to you.
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thanks Quiggy! So sorry to hear about your healing complications. My breast surgeon mentioned the possibility of infection with the implants, although my PS seemed to think that would be no big deal. I had c sections with both pregnancies and that resulted in ileus for me because of adhesions. I'm really hoping since this surgery isn't abdominal, that I won't be in that boat again. It's hard to know. Thanks for your support
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Hi Jblmom,
Now worries, I'm doing much better. I think a life of crohns made us strong enough to battle most anything!
Trust your doctor's but most of all trust yourself. You know your body better than any of them.
Infections can be treated and most of the complications can also. You might sail through this with none of the complications. Hopefully you will.
When's your surgery?
BC is a heck of a journey. I met some awesome women on these boards and they helped pull/push me when I needed it the most. Our friends and family can't understand most of these trials and of course, we worry about sharing too much. Right?
Hugs and support sister. Reach out when you need to. I'm here, ready and happy to listen and share.
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I would like to make a new thread as I have Crohn's Disease (36 years) and was diagnosed with invasive breast cancer this October. I finally started chemo in November. Since I was taken off 6MP and on chemo drugs, my Crohn's is worse. I have a very odd case of Crohn's as I have strictures and a capsule retained since 2005 in the small intestine. I am unable to have another MRI as the one I had almost damaged my small intestine.
All of this is very challenging. I am almost 62 years old and have other health issues as well. Hospital provides transportation for chemo only. I need to see other specialists for other health issues -- Crohn's, asthma, degenerative disc disease, but can't afford to take car service to appointments. Hair is falling out after two chemo sessions and can't get transportation to a wig salon covered by my insurance. I also am going this alone as I don't have anyone. I would like to hear from anyone undergoing something similar.
I know Crohn's has made me stronger, but it pales it comparison to cancer.
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Hi Rhonna,
Sorry you are here but glad you found this group.
I've suffered with crohns since I was 22, I'm 56 now.... many surgeries, transfusions and tried various RX. As you sadly know, it's a challenging disease. Good periods and some not so good.
My dx of breast cancer was 3 years ago in November. I was lucky, didn't need chemo. Had surgeries (4) and radiation. Did Aromisin but couldn't tolerate so went without. My Crohns has been up/down during and after tx. Stress didn't help.
Very little info out there on the effects of BC and Crohns. My onc researched too. Has been trial and error, not dissimilar to Crohns treatment.
Sorry you are struggling with access to services and support. This on line group support may help, it helped me.
Depending on where you live, could be support from BC or Crohns groups. Urge you to reach out to them.
Have you asked your onc team for resource support? Where I received radiation txs, there were flyers on lots of groups offering help.
There may be more options then you know, please don't feel like you're alone.
Wishing you the best and sending gentle hugs.
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I was just diagnosed this week with Lobular BC, I don’t have the full cytology report yet. I also have Crohn’s Disease. I’m a little overwhelmed with all the information and the quick decisions that must be made. Anyone else dealing with both that can share
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Hi Donna0904 and welcome to Breastcancer.org,
We're so sorry to hear of your diagnosis, but we're really glad you found us. You're sure to find our Community a helpful space full of information, advice, and support. Things are usually quiet around here on the weekends, but we're sure someone will be by soon to share their experiences with Crohn's and breast cancer.
We look forward to hearing more from you soon! Please let us know if you need any help at all.
--The Mods
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Hi Donna
Sorry you find yourself in this place but glad you found the forum.
I was in your shoes Dec 2014. I had invasive ductal carcinoma. Have battled Crohns since 1984. Took a couple years fighting the initial cancer and surgeries.
Did lots of research for patients battling both diseases, my onc did too. Not much to find, no formal studies or research. It lined up with autoimmune issues.
We're all different, how we react/respond etc. For me, my Crohns has acted up a few times and added to the challenges of treatments, fatigue and follow up drugs. In the end, it has been tough but tollerable.
I personally think my years of fighting Crohns gave me an advantage! You know us Crohns fighters have learned tolerance and the importance of being your own advocate.
Chin up sister! Take this day to day, ask questions and take care of you! Rest when you need to. Cry and scream when you need to.
I'm sending you lots of positive thoughts and hugs. Feel free to PM me if you want to talk.
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Hi Donna
Sorry you find yourself in this place but glad you found the forum.
I was in your shoes Dec 2014. I had invasive ductal carcinoma. Have battled Crohns since 1984. Took a couple years fighting the initial cancer and surgeries.
Did lots of research for patients battling both diseases, my onc did too. Not much to find, no formal studies or research. It lined up with autoimmune issues.
We're all different, how we react/respond etc. For me, my Crohns has acted up a few times and added to the challenges of treatments, fatigue and follow up drugs. In the end, it has been tough but tollerable.
I personally think my years of fighting Crohns gave me an advantage! You know us Crohns fighters have learned tolerance and the importance of being your own advocate.
Chin up sister! Take this day to day, ask questions and take care of you! Rest when you need to. Cry and scream when you need to.
I'm sending you lots of positive thoughts and hugs. Feel free to PM me if you want to talk.
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Boy was I glad to see your response. The not knowing what I'm facing is the hardest part, I know once that's determined the battle will be on! I believe you are correct in that we have dealt with a lot already.
I traveled to see my daughter, who is 27, this weekend. It was tough. I think telling her will be the hardest part. Now I'm ready.
I'm sure I'll have a million questions!
Stay tuned!!
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Donna,
I found the connections on this forum comforting and reassuring. This cancer journey can be lonely amongst other things. It's hard for others to understand the "scanxiety " and the things cancer patients endure. People here understand and if you have questions, we'll give you straight answers.
Good luck as you share your news and face the future. You have support and friends here.
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Thank you so much... stay tuned!
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I had my lumpectomy on January 17th along with two abdominal surgeries for the Crohn's disease. I spent 24 days in the hospital and came home on January 24th. I was finally able to see doctors that I was too sick to see in November and. December.
I will see oncologist on Thursday. The pathology report showed that the tumors were removed and the margins were clear. However, after coming home from the hospital, all of my hair fell out (all over -- head, arms, legs, pubic).
I had to stop chemo as of December 14th because I was too sick.
I don't know what is wrong with me -- could the cancer have spread even though it was removed from the breast? Why am I going bald these past five weeks. I feel that I am dying from cancer. Am I crazy to think these thoughts? Is there something wrong with me?
I am very worried.
Has this happened to anyone else?
I also scalp cooled for the four cancer treatments (A/C). I had hair in December and January and even washed it in the hospital.
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HI RHONAA WELL I AM ANOTHER CROHNNIE.. I WAS DX WITH CROHNS IN 1981.. HAD RESECTION DONE ABOUT 13 YRS AGO..[ SM. INTESTINE..] I HAVE BEEN ON MEDS EVER SINCE.. I ALSO HAVE A RARE SKIN CANCER ONGOING SINCE AND ALSO BREAST CANCER..WAS JUST 6 YRS AGO..HAD MASTECTOMY & RECONST.. 1 BREAST ONLY.. NOW I WAS JUST FOR MY YRLY MAMMO & ULTRASOUND AND THEY FOUND 2 SUSPICIOUS AREAS IN MY GOOD BREAST.. I NEVER HAD TO HAVE CHEMO OR RADS..SINCE I CHOSE THE MASTECTOMY INSTEAD OF THE LUMPECTOMY..AND MY CANCER AT THAT TIME WAS STAGE 0 DCIS.. I AM NOW A LADY IN WAITING..I DO NOT WANT TO HAVE 2 PAINFUL BIOPSIES.. I RATHER JUST HAVE ANOTHER MASTECTOMY WITH RECONST.. RHONAA..DIDNT YOUR ONCO TELL U THAT CHEMO CAUSES U TO LOOSE YOUR HAIR ?? THAT IS WHAT HAS HAPPENED TO U.. I HOPE IT WILL GROW BACK.. THERE ARE SOME CHEMOS THAT DONT CAUSE HAIR LOSS..BUT MOST DO.. I HOPE U ARE FEELING BETTER BY NOW.. I ALSO WORRY ABOUT THE CROHN'S ACTING UP DUE TO THE EXTRA STRESS THAT I AM NOW UNDER.. I THINK IT ALREADY PEEKING ITS NASTY HEAD OUT ?? I WILL NEVER DO CHEMO.. I BELIEVE BETWEEN CHEMO & CROHN'S WOULD DO ME IN FOR SURE.. LET ME KNOW HOW U ARE DOING.. BYE FOR NOW..HOPE
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@Donna0904, yes I can fully relate. I’ve done 2 rounds of chemo and herceptin and my guts are pissed off. I’ve been living with Crohn’s since 2007 and these drugs are pretty brutal for me. I have every pill under the sun to take but they don’t help but maybe 50%. What does help is marijuana!! Glad I live in Oregon. Tho I will probably need bowel surgery after all of this is over
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Hi everyone, also living with crohns for over 30 years...Colon resection that many years ago. I have been very very fortunate over the years and really haven't had any symptoms. I am so sorry and can't begin to imagine how miserable the pain must be for you. To this day I remember the pain before my surgery and can't imagine chemo side effects on top of that. I have a different spin on my situation and I may be wrong. Last TC chemo for me is this Monday 6/4 I have had zero side effects and feel totally normal if not better than normal. I honestly feel my my body likes the extreme immunosuppression that chemo provides. My concern is how I will feel after chemo is done. S*#t may hit the fan then ( pun intended) and i am holding my breath. i have always been told that if in remission going into surgery, pregnancies, and maybe chemo etc that things tend to stay that way. Thankfully that was the case and has held true for me. May I ask if most of you were having active symptoms going into treatment? Should things change for me with adding arimidex etc I would definitely weigh pros and cons of treatment. Each day should not have to be miserable one. Again, I am so sorry and hope that things get better soon for those of you that are suffering.
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HI DEBAL..I ALSO HAVE CROHNS FOR MANY MANY YRS.. HAD RESECTION OF SM INTESTINE ABOUT 13 YRS AGO.. NOW I HAVE ADH IN MY GOOD BREAST..WAS FOUND ON MY SURGICAL BIOPSY RECENTLY... MY PRIMARY CARE DR SUGGESTED GOING ON ONE OF THE DRUGS TO PREVENT B/C AGAIN.. HOW ARE U DOING ON THE ARIMIDEX?? HAS IT AFFECTED YOUR CROHNS AT ALL.. ANY SIDE AFFECTS..SO FAR I REFUSED ALL OF THOSE TYPE OF DRUGS.. I TAKE ENOUGH MEDS AS IT IS... LET ME KNOW..THANKS..HOPE U ARE DOING WELL..P.S. I NEVER HAD ANY CHEMO OR RADS FOR MY B/C JUST THE MASTECTOMY WITH RECONST .& IMPLANT... BYE FOR NOW HOPEDREAMS
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Hi all,
Looks like this thread hasn't been used in awhile, but I'm hoping somebody may have advice for me. I've had Crohn's for 25 years (I'm 42) and was recently diagnosed with DCIS. Because I'm also BRCA 1 positive, the surgeon is recommending double mastectomy. I don't want to do implants, because I also have a history of non hodgkin's lymphoma from 18 years ago and don't want the silicone in my body. The plastic surgeon is recommending a DIEP flap where they transfer abdominal fat and skin to shape the breast, but several people I've talked to mentioned issues with bloating when eating and pain. It seems to have resolved or can be managed for them after a coupe of years, but bloating is a constant problem for me no matter what or how much I eat. I'm fortunate I've never had Crohn's surgery, but I'm worried the DIEP will present a lifelong challenge with eating and pain (I already get pain from eating because of the Crohn's alone!). Anybody have experience with Crohn's and DIEP?
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wintnt, welcome you to our Community here at BCO, we hope you've found this to be a supportive place!
We can't really help you with your question but as this is an older thread and it may take some time to get an answer, perhaps you could also introduce yourself and ask in the active 2018 DIEP Surgery thread. Let us know if you need help with that!
Best
The Mods
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hi..wintnt.. I HAVE HAD CROHNS SINCE I WAS 25 YRS OLD.. I ALSO HAD TO HAVE AN ILEO COLIC RESECTION SURGERY ABOUT 13 YRS AGO.. SMALL INTESTINE.. I AM NOW 71..SINCE THAT TIME I HAVE BEEN DIAGNOSED WITH 4 DIFFERENT CANCERS..NOT RELATED TO EACH OTHER
..AND OF COURSE MULTIPLE SURGERIES.. I HAD A MASTECTOMY AND HAD THE TISSUE EXPANDER PUT IN AT THAT TIME..THEN A FEW MONTHS LATER I HAD THE SILICONE SMOOTH INPLANT PUT IN.. WAS THE BEST THING TO DO FOR ME..AND HAVE HAD NO ISSUES WITH IT SINCE... THANK GOD.. I ALSO HAD PRE CANCER IN MY GOOD BREAST 2 YRS AGO AND SURGEON WOULD ONLY GIVE ME A LUMPECTOMY..I REALLY WANTED ANOTHER MASTECTOMY..SO I COULD MATCH..BUT SHE REFUSED.. I ALSO GET OCCASIONAL BLOATING.. FROM THE CROHNS.. DEPENDING WHAT I EAT..I ALSO HAVE BEEN ON MEDICATION DAILY FOR CROHNS ALL OF THESE YRS.. BUT IF U ASK ME.. I WOULDNT HAVE THE SURGERY ON YOUR BELLY.. FOR A FEW REASONS..IT COULD UPSET YOUR INTESTINES..& U DONT WANT THAT TO HAPPEN.. AND ALSO IN THE EVENT THAT U MIGHT NEED TO HAVE A RESECTION DONE..[ I HOPE NOT !!] BUT AT LEAST IT WOULD BE LESS COMPLICATED ..SINCE YOUR BELLY WAS NOT DISTURBED FROM THE FLAP SURGERY. REALLY DONT BE AFRAID OF THE SILICONE IN YOUR BODY..I HAD A WONDERFUL PLASTIC SURGEON WHO DID A GREAT JOB ON ME..AND I STILL SEE HIM FOR FOLLOW UP VISITS.. THE IMPLANT GETS TO FEEL LIKE PART OF MY BODY..AFTER A FEW YRS OF HAVING IT..ITS SOFT..AND COMFY INSIDE OF ME.. IF U HAVE ANY OTHER QUESTIONS..PLEASE LET ME KNOW IF I COULD HELP U FURTHER.. TAKE CARE..~ HOPE ALSO HEALTHY & HAPPY NEW YEAR..LET ME KNOW YOUR THOUGHT ON THIS..THX0 -
Hi hopedreams!
Thank you so much for your response. Unfortunately, it isn't only the Crohn's that is a concern with the silicone implants. I also have a history of non-Hodgkin's lymphoma. I don't want to do anything that would risk upsetting my immune system and potentially cause a lymphoma recurrence. I really appreate your feedback though!
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HI AGAIN.. IF I WERE U I WOULD HAVE A SERIOUS CONVERSATION WITH YOUR PLASTIC SURGEON ABOUT YOUR ISSUES.. I HAVE HAD 4 DIFFERENT CANCERS NOT RELATED TO EACH OTHER.. BUT MY IMPLANT WAS A PIECE OF CAKE TO GO THRU THAT.. NEVER HAD ANY PROBLEMS.. I WOULD BE MORE AFRAID OF ABDOMINAL SURGERY.. COULD CAUSE INFECTIONS ETC..AND MUCH MORE PAINFUL FOR U..IT'S ONLY MY THOUGHTS.. U HAVE TO DECIDE FOR YOURSELF..IF U NEED TO TALK..ASK ME ANYTHING.. IN FACT I STILL SEE THE PLASTIC SURGEON FOR FOLLOW UPS AND HE TELLS ME ITS PERFECT..THANK GOD..!! I WOULD DO IT AGAIN IN A HEART BEAT IF I NEEDED IT IN MY SO CALLED BETTER BREAST..!!?? WHICH I HAD A LUMPECTOMY I THINK IT WAS ABOUT 2 YRS AGO.. NOW I AM ABOUT TO HAVE ANOTHER SKIN CANCER SURGERY NEXT WEEK..COULD USE SOME PRAYERS.. THANKS ~HOPE
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HI RHONAA PLEASE PLEASE... DO NOT TAKE ANYMORE OF THE 6MP..PURINETHAL.. A LOCAL GI DR PUT ME ON THAT MED FOR 21 YEARS !!! FOR MY CROHNS DISEASE... I NOW HAVE A VERY RARE SKIN CANCER..& I GO TO A MAJOR CANCER HOSPITAL IN NYC.. THE DERM DRS THERE SWEAR THAT THIS RARE SKIN CANCER CAME FROM TAKING THE 6 MP FOR SO DAM LONG.. I WAS THIS LOCAL GI 'S DR EXPERIMENT..AT THAT TIME.I GOT RID OF HIM REAL FAST WITH THIS NEWS..!!!!. YES IT DID HELP MY CROHNS.. BUT AFTER I STOPPED TAKING IT.. I DID WIND UP HAVING A ILEO COLIC RESECTION.. IN MY SMALL INTESTINE..WAS A PAINFUL SURGERY..BUT I SURVIVED IT..OMG I WAS SOOO SICK AT THAT TIME.. BUT WOULD NEVER EVER TAKE THAT MED AGAIN..I JUST FELT I HAD TO LET U KNOW THIS..IN FACT I AM HAVING ANOTHER SKIN CANCER SURGERY COMING UP..THIS HAS BEEN GOING ON NOW FOR 25 YEARS.. NEVER ENDS..I GET INJECTIONS INTO MY LESIONS..USUALLY THEY WORK.. AND OTHER TIMES IT FAILS..THEN I NEED TO HAVE SURGERY..I STILL TAKE MEDS FOR MY CROHNS.. 10 MG OF PREDNISONE DAILY.. ALSO BUDESONIDE EC CAPS 2 DAILY AND ALSO PENTASA.. I NEVER MISS MY MEDS..AND SO FAR.. OK.. AS FAR AS U GETTING A WIG.. TRY TO FIND A HOSPITALL NEAR U THAT HAS "LOOK GOOD FEEL BETTER" THEY GIVE OUT FREE WIGS..LOOK INTO THAT.. I HOPE U ARE DOING WELL BY NOW.. PLEASE LET ME KNOW HOW THINGS ARE GOING FOR U..ANY QUESTIONS FOR ME I WOULD BE HAPPY TO HELP IF I CAN..HUGS..~HOPE. P.S. I NEVER HAD CHEMO OR RADS FOR MY BREAST CANCER..JUST A MASTECTOMY WITH IMPLANT..AND AFTER THAT I HAD A LUMECTOMY IN MY OTHER BREAST ABOUT 2 YRS AGO.. YES CROHNS AND CANCER IS NOT A GOOD MIX..BUT IM HANGING IN...XOXO
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My mom was just diagnosed with Breast cancer she is 79. Surgery is next week. it does not look like she will need chemo at this point but will know for sure after the lumpectomy. We are concerned about the treatments after. Her Crohn's has been under control for 21 years. She had her second surgery in 1999 after her first surgery 20 years before that. She is extremely careful about her diet and takes Pentasa. At her age she obviously is concerned about another major surgery if she should have a flare with the medications. Any experiences with radiation or medications and Crohn's?
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grebnerog, welcome to our Breastcancer.org community. We're sorry to hear that your mother has to go through this. It will naturally be very important to let each member in her treatment team (surgeon and team, medical oncologist, radiation oncologist) know about her Crohn's disease as they consider medications, and pain killers. I hope you hear from others here about their experiences. Please let us know how her surgery goes.
The Mods
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Hi,
I'm 65 with Crohn's. 3 years ago, before I knew I had Crohns I had a lumpectomy and started hormone therapy with anastrozole, an aromatase inhibitor (AI) for chemoprevention. I had a lot of stomach upset, lack of appetite, weakness from this medication along with the Crohns symptoms, mostly diarrhea and stomach cramps. I only lasted a few months before I quit which I now greatly regret, especially since I was in much better physical shape then. I now take an immuno-suppresant azathioprine for my Crohn's and am careful what I eat which works great!
I wish I had stuck it out or tried a different hormone therapy medication! In February 2020 I had to have a single breast mastectomy even though I had regular mammograms and breast exams with sentinel node removal and breast reconstruction (the later yet to happen) for DCIS, which covered a large area and multifocal ducts, with no chemo or radiation needed. Will either go back to an AI or relaxofen after I get a DEXA bone scan (don't know when) to figure out how much ostopenia I have. From research in Internet (you can find a reference is breastcancer.org ) about interactions of Crohn's and breast cancer it seems there is no concern about taking my medication for Crohn's with breast cancer, but check with her GI. Her breast surgeon should know about the likelihood of radiation and the biospy report (upcoming after surgery or maybe also from the biopsy) if her turmor is hormone receptor positive.
Hope all goes well with the surgery.
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