DCIS and birth control pills

Gran
Gran Member Posts: 104

Hello Ladies,

I have a question about taking birth control pills post bilateral mastectomies for DCIS.  My DCIS was found on mammogram (no lump) and found to be grade 2/3 with possible microinvasion.  It was ER+ and PR+  After diagnosis, I went immediately off the pill and stayed off for 4-5 months.  However, I was having really heavy periods (a super tampon every 1.5 hours and leak through) that lasted many days.  After that I had brown sludge that lasted until my next real period.  I was in misery!

I have many uterine fibroids that I think are partly the cause of the problem.  My gynecologist wanted to do a hysterectomy and I said no.  I did not want that on top of everything else, so I ended up back on the pill (microgestin 1/20) continuously.  My breast surgeon said it would be fine and not increase my chance of breast cancer recurrence in any significant way since I was post bilateral mastectomies.  Now I am wondering if that is actually true.

One reason I am so worried about having excessive bleeding is that I do a lot of freediving (underwater breathholding) and spearfishing and I need enough hemoglobin to transport oxygen otherwise I risk the real possibility of passing out underwater and dying.  For me, having enough red blood cells / hemoglobin to transport oxygen = life.  

Does anyone have an opinion on using the pill after ER+ and PR+ DCIS? 

Gran  

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    At most, birth control pills are thought to "slightly" increase breast cancer risk. According to the information about risk factors on the Komen site, birth control pills increase risk by 10% - 30%.  After a bilateral mastectomy for DCIS, your risk of a recurrence or new BC is 1% - 2%.  A 30% increase would take your risk up to 1.3% - 2.6%.  Even if taking birth control pills doubled your risk, this would take your risk up to 2% - 4%.  If you can live with your risk at that level, then it seems reasonable to go ahead and take the birth control pills, if they will help your quaility of life. 

    Edited to add the link to the Komen info about the BC risk associated with birth control pills:  http://ww5.komen.org/BreastCancer/CurrentorRecentUseofBirthControlPills.html

  • Gran
    Gran Member Posts: 104
    edited October 2010

    Hi Beesie,

     What an impressive, detailed answer!  (How do you know so much?!)  You have really helped me and I want to thank you for responding so quickly and with so much information.  Deborah said you are incredible and she's right.  Thanks!

    I will stay on the pill and continue to do the sport I love!  Yay!   

  • meglove
    meglove Member Posts: 267
    edited October 2010

    Hi Gran,

    I have very similar problem as you during period starting this Feb. So I went to see a Gyn and started on birth control pills on the 5th day and was taking Cyklokapron as needed. I also have a few fibroids that have made my uterus enlarged (3 months pregnancy size, did you have your size checked?). So I am thinking to have a complete hystere but you are trying to avoid that. I know there is a lot side effects to have a hystere but it seems we do not have other options, other than taking birth control pills.

    In fact, I was blaming pills for my BC. After I started to take pills, I noticed i have bloody discharge from one breast then my BC was diagnosed. 

    Could you share some of your thoughts not wanting to have hystere? Meg.

  • Gran
    Gran Member Posts: 104
    edited October 2010

    Hi Meg,

    Whippetmom knows more about this than I do, but I have heard there is a way to zap the fibroids without removing the uterus.  I did not want a hysterectomy because I was overwhelmed by the breast cancer, and I also felt that it was a pretty invasive surgery that could lead to adhesions of the bowel and other problems.  From a strictly vanity point of view, I also worried that the operation would leave me with an abdominal 'pooch' instead of a flat abdomen.  I have also heard some women complain that it adversely affected their sex lives.  So, I would rather zap the fibroids or take the pill at this point than have a hysterectomy for those reasons.  I know my reasons might sound silly, but that is an honest answer to your question.

    Gran 

  • speech529
    speech529 Member Posts: 337
    edited October 2010

    Gran

    I understand your situation.  I had DCIS, too....and I was on the same birth control pill you are taking for 10 years.  My doctor told me no more (but I still have one breast).

    In re to heavy periods, have  you thought about uterine ablation?  If you are not planning on any more pregnancies, this may be an option for you.

    I had a total vaginal hysterectomy with bilateral oopherectomy 3 weeks prior to my unilateral mx (June 2 and then June 28).  Due to a prolapsed uterus that was causing many bowel/bladder problems and a strong family hx of cancer (my mom died of ovarian ca; aunts with breast cancer) and my age (51) and no periods.

    I have NOT gained weight and my belly is as flat as ever (I had 2 c sections 20+ years ago and have a horizontal scar in the pubic area, but not fat flap there either).  Prior to surgery I was in great shape, but I am more physically active now than before and feel much lighter in the abdomen.  I was very scared of all the SEs you talked about and none came true for me.  I have taken a single progesterone shot to deal with hot flashes and that has been successful.  Yes, sex was painful at first, but it's fine now.  

    I am not trying to convince  you to have a hysterectomy, but I wanted to share my experience with these surgeries.  I was shocked when I found out I had to have a hysterectomy, very apprehensive, but now I feel like I am 25 years old again!  I did not know how miserable I was.  I got alot of support from www.hystersisters.com, also.

    I wish you the best in your desire to maintain an active and fulfilling lifestyle!   Your spearfishing and freediving sound exciting!!

     

  • meglove
    meglove Member Posts: 267
    edited October 2010

    Hi Speech, thanks for sharing your experience. I will check out on the link you have posted.

    I heard nowadays the hystere is done through laproscropy. But I see if you have chosen Vaginal. Would be glad to know the reason of your choice. How long did it take for you to recover? Best wishes, Meg 

  • Gran
    Gran Member Posts: 104
    edited October 2010

    Hi Speech529,

    Thanks so much for writing.  Lots of good info in your post.  I will check into ablation (is that the zap?) when I see my gynecologist in December for my pap.  I am sure there must be something other than hysterectomy (at least at this point -- I am so sick of surgery!  With the nipple surgery, I will have had 6 surgeries this year alone!  And 6 previous surgeries.  Soon I won't have any organs left!  Ha!).  Thanks also for the web site info -- I will check it out.

    Gran  

  • roseg
    roseg Member Posts: 3,133
    edited October 2010

    As I understand it their are two procedures to get rid of heavy bleeding from fibroids.  One is the abalation where they burn off the lining of the uterus, the other involves threading a catheter through the leg into the uterus and releasing little pellets that clog up the blood vessels to the fibroids, shrinking them.

    Apparently the pellet-thing runs of risk of putting you into menopause because it reduces blood flow to the ovaries sometimes. The abalation is sometime less effective with fibroids because the surface of the uterus is lumpy. 

    Other authors say that unless fibroids are in the interior of the uterus that they don't cause excessive bleeding, rather fibroids indicate that you have high levels of estrogen and as you have irregular ovulation all that estrogen causes excessive bleeding.

    I think given that you had a bilateral the risk from the pill is minimal and it's probably a good non-surgical option.

  • Gran
    Gran Member Posts: 104
    edited October 2010

    Hi roseg,

     I totally agree.  I will talk to the gyn in December, but I am in no rush to make any decisions.  By the time they tell me I have to go off the pill (I don't know at what age that is) they will probably have invented a new, easier technique to deal with fibroids.  Or, if I am menopausal, it won't matter any more.  I guess there is always a silver lining if you look hard enough.   : )

     Gran 

  • speech529
    speech529 Member Posts: 337
    edited October 2010

    meglove  My doctor recommended vaginal as the recovery is much quicker than any abdominal surgery.  She did caution me that if there were any problems removing my ovaries a laparscopic approach would be used.  In my case my uterus and ovaries/tubes were out through the vagina.  My surgery took 45 minutes.

    I am very active and I stepped up my exercise in the 6 weeks prior to surgery--6 days a week of very intense exercise and so glad I did it.  I had a little swelling (like with a bad menstrual period) in my lower belly but it was gone in 3 days and back into my normal clothes.  I was up walking around the hospital the afternoon of surgery.  I went home the next day.   I was walking 2 miles after about 3 weeks.  I think my good physical condition helped alot.  I had a lumpectomy on the same day as hystere and that was more painful. 

    When I first read posts on the hystersyster website, I thought, gee these women have had some really rough conditions--that's not me at all. Why am I doing this?  But my gynecologist assured me that if I waited I would need the surgery and possibly pelvic reconstruction as my uterus was dropping.  Also, with the family cancer hx, she thought getting the ovaries out was a must (so did my dad, who is a surgeon).  So I trusted her and so glad I did it.  I had no idea how difficult my bowel/bladder problems were until I had the surgery.  It was like night and day.  

    It is not an easy decision, so get your facts and a second opinion if needed.  For me, it was a good decision.

  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited October 2010

    Good input above; I would add that I don't buy the current statistics that the pill doesn't substantially increase risk. Anything that floods your body with synthetic hormones is going to screw your body up in ways that the industry will never admit to unless forced to. So, I personally will never, never, never again take birth control pills. I would have the fibroids surgically removed or uterine ablation etc. before I'd have a hysterectomy or (worse) take any type of synthetic hormones.

  • Gran
    Gran Member Posts: 104
    edited October 2010

    Hi Speech529 and CrunchyPoodleMama (love that name!),

    Thanks for your thoughts.  I will speak with my gyn soon and also check with some other breast cancer docs to get their opinions.  I do agree with you, CrunchyPoodleMama, that drug companies will never tell the truth about these things.  They have a horrible track record.  Maybe I will also seek the advice of a naturopathic doctor or another non-mainstream professional to see what their thoughts are.  I appreciate your feelings on this Poodle, and your personal experiences Speech.  

    Gran 

  • mamatwinz
    mamatwinz Member Posts: 248
    edited February 2013

    i was wondering this as well..my med onc said there was no evidence to support increased risk since i had bilat mastectomies.. i use primarily for birth control and to regulate my cycle..have been on them since i was 18..and was diagnosed at 40.. i had switched a few times due to migraines and for the past few years was taking aviane..its low dose i belueve...  lord knows i am second guessing everything now...so did u guys ask ob or med onc???

  • jill47
    jill47 Member Posts: 351
    edited February 2013

    mamatwinz:  I'm glad you made a post on this topic, I didn't know it existed and it's relevant to me.  I was on the pill for 20 years; day of dx last May my OB/GYN took me off the pill she prescribed to me all these years.  I had 3 or 4 light periods right after I stopped which was wierd b/c while on the pill I had maybe 2 periods a year. First week of Jan this year got the heaviest period of my life, dark red blood clots poured out when I went to the bathroom 2-3 times an hour + extreme pelvic pain & distended girth for 8 days.  Same heavy period, pain etc started again 4 weeks later but on the 2nd day I called my ob/gyn office and they wanted me in right away. Ob/gyn said no hormones b/c my bc was 98%ER/99%PR+; no D&C b/c of all the surgeries I've had since July. She gave me Lysteda (an acid) to significantly slow down the bleeding, it's strong 3,600mg/day, but it's just a temporary fix for whatever the problem is. March 8 I'm having a transvaginal and abdominal U/S to see what's going on internally.  2 weeks after that is my quarterly BS appt who works down the hall from my MO, my ob/gyn is part of the same hospital system as my cancer center so they all know each other, good for me. 

    I'd like to hear from other gals who were long term pill users then went off them post bc dx and had gyno issues. Sorry but bc pills scare me.  I'm BRCA- but have strong hormonal male/female cancers maternal side.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited March 2013

    Hi Gran, I  had DCIS in the right breast and was estrogen and progesterone positive. The oncologist I saw and the breast surgeon told me that I shouldn't use birth control. But there will always be differing opionions among health professionals. I didn't want to take the chance. Even though there is very little chance that after having PURE DCIS and a bilateral mastecomy of getting cancer again, I didn't want to take the chance. I was 42 at the time of diagnoses and 43 at the time of my BMX with node removal.

    I had my BMX and node removal on 1/11/11. I, too, had horrible periods like yours, but not even close to being that bad. I had more pain issues. I decided to have my ovaries, tubes removed as well as a total hysterectomy in November 2011, ten months later. I would absolutely never recommend getting them both at the same time. I found that after the BMX, I needed the belly and leg muscles to crawl out of bed, get out of the chair, etc. That would have been too much all at once. (The oncologist I saw told me to get it all done at the same time but he is not a surgeon.When I talked with the surgeon, she said that in no way did she recommend getting all that surgery done at once and I am so glad I listened).

    I consulted with a good ob-gyn in my area, and he gave me information and totally left the decision up to me. I figured I would hit menopause someday anyway so why not get it all over with. There are some things to think of that I learned: hot flashes suck but I have found ways to deal with it and they are certainly not as intense over a year later. Having the worst hot flashes during the winter is much better than the summer (I didn't get immediate hot flashes, mine started when the estrogen I had left ran out, although there is some estrogen left in the body), my sex left went south (not that it was that good anyway, my partner has erectile dysfunction and after the cancer things changed with me, especially after the hysterectomy and ovaries and tubes removed. But we are both ok with the way things are.), my skin got drier but I just use lotions and moisturizers and make sure I stay hydrated, my hair changed (or it could be all the extra gray that came in lol), I need to get periodic bone density scans ( I am getting my first next week), and as with getting older etc etc it is harder to keep the weight off, although if I ate better it would probably help.

    So I am glad I got mine out. When they biopsied my uterus, I remember the doctor telling me I had some kind of fibroid or something, I can't remember the name of it now, but that could have been raising havoc with my periods.

    We each have to get the information we can, look at the facts, and try to decided what is the best course we want to take. For each one of us, we take our own path to get to the decision on what to do and make our own final decision. For some it easier, for some it is harder, and everything inbetween. It doesn't make any one better than anyone else. We are all just trying to get through the journey the best we can.

    I wish you all the best. Let us know how you are doing.

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