BC history and now uterine cancer?

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lsugirl
lsugirl Member Posts: 49
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi friends - well I honestly didn't think I would be back but I am.  Not sure if this is where I need to be but I feel safe here so I hope someone can help me again like you all did before.

I'm almost 2 years out from my DCIS diagnosis - double mx with abdominable flap reconstruction.  I was 40 at my diagosis - BRCA negative.  I chose not to do tamoxifen b/c of the increase chance of uterine cancer vs risk of breast cancer returning.  No invasion.  

Well, I get a call yesterday from my RE (infertility doctor) who said that my pap smear was normal for cervical issues but there were some cells from my uterus lining that showed up and with my age and I guess history of BC it is recommended I do further tests to rule out anything more.  So I'm scheduled for I guess a uterine biopsy next week (Wed.) and if those results are inconclusive I will have to go under and do more biopsy - D&C type I guess?  I also have a history of endometriosis (dx at 14 with 5 laps before I was 30) - was on the pill for 23 years and went through infertility shots/meds for 2 years before BC dx.  No children.  

So has anyone else there experienced this? I don't want to be alarmed but I want to be prepared you know?  Is there an increase of uterus cancer after I had BC?

Any help, suggestions, etc. is really appreciated - I feel frustrated - wasn't planning on further tests dealing with the ugly C word!!

Thanks and blessings to you all!

Kim 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited July 2011

    Can't help much, but I'm in a somewhat similar situation at the moment.  I did choose to take Tamoxifen, and have pelvic ultrasounds every 6 mos. 

    Last week (my 2nd time through the ultrasound process) it seems they found a polyp and there was some discussion among the folks in the ultrasound dep't about what to do next (some sort of saline infusion test to determine if it was a polyp or "the Tamoxifen effect"?). 

    In the end, they decided it was my gyn's decision and they did nothing further.  Haven't heard from my gyn yet.

    So my situation is not particularly helpful to you, other than I'm also going through the WTF process.

    Plus, I'm also waiting to hear from my dermatologist because I left my annual 'skin check' screening, which I expected to be uneventful, having undergone 3 biopsies.

    I hate cancer.

    Wishing you the best!!!

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  • redsox
    redsox Member Posts: 523
    edited July 2011

    Hi Sweaty and Lsugirl,

    I know we will never again be able to approach any biopsy or additional testing without thinking about cancer as the outcome, but this is probably the couple of years out with extra caution phenomenon.   I have had the extra-testing like Sweaty's prospects -- a vaginal ultrasound that led to a sonohysterogram (or hysterosonogram -- apparently the terms are interchangeable).  I was ready to go straight to D&C after the ultrasound but my gyn was not.  The result was  "normal tamoxifen changes" which I am not too happy about but my gyn is totally cool with. So take it one step at a time.  We will always have extra testing but not always a cancer diagnosis. 

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  • lsugirl
    lsugirl Member Posts: 49
    edited July 2011

    Thanks ladies - I appreciate your response and support.  Sweaty - glad your dx wasn't cancer but is your gyn going to let you stay on tamoxifen?  My doctor asked me if I was taking it and I said no, confirming my decision why I refused.  I guess we will know more after my biopsy I'm having on Wednesday - I am making an appt. with my breast surgeon as soon as I can to get her point of view.  I see her every 6 months so hopefully she will be able to either calm me down or help me in decisions.  

    Honestly the main reason I'm upset besides thinking that I might have to go through cancer crap again is the fact that my job is ending in 2 weeks and I don't have anything lined up yet.  Fortunately I can go on my husband's insurance but I would like to have my own job and insurance.  And can you imagine if I did have to have surgery - I would be off for a few weeks.  Ok so I'm getting ahead of myself but like my breast cancer I want to know ALL scenarios so I'm prepared just in case.  I can deal with anything but don't like to be caught offguard you know?

    Ironically my father is being monitored for his PSA scores - he had prostate cancer 15 years ago at the age 54 and now he's 69 and his numbers are increasing - they should be ZERO but are at 1.5 so if they come back double he will have to start taking ESTROGEN - can you believe that?  Estrogen tries to kill us and now they might give it to my father to help him?  Crazy right?  

    Thanks again ladies - we will always have a cautionary eye on our bodies and I thank God that we have better testing these days so we can catch this evil stuff early and save our lives.  :)  Hope you had a great holiday! 

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  • lsugirl
    lsugirl Member Posts: 49
    edited July 2011

    Well I went for my biopsy on Wednesday and after the doctor noticed on the sonogram that my left ovary was HUGE and most probably ovulated - he postponed my procedure until 10 days after my next cycle starts which hopefully will be next week sometime.  I can't tell you how frustrated I am, you just want to raise your hands and scream REALLY???!!!  With my current job ending next Friday and I don't have anything lined up - being anxious is an understatement!  At least my doctor is thoughtful and didn't want to put me through the biopsy procedure twice - he was concerned that my progesterone being elevated might cause something else on the results and he didn't want to take that chance so I'm grateful that he is attentive to me.  He did say had this been another patient he probably would have waited three months for a follow up but because of my history and all the issues I've had he is moving fast.  Thank God for him!!

    And I found out that my father's PSA has gone up in the last 3 months - he had prostate cancer 15 years ago with removal of the entire prostate so testerone is like estrogen - it can do bad things to men.  His doctor is thinking about giving him shots of Lupron to slow the testerone down and hopefully stop any future growths.  Crazy that my father and I could be taking the same medicine.  Creepy actually but I'm telling every doctor I have and his doctor to use us as guinnea pigs b/c clearly there has to be some tie between his early prostate cancer and my hormone driven issues.  

    Anyway, just wanted to share that I'm in a holding pattern AGAIN.....and really need prayers for patience and peace - I don't want to stroke out before I find out anything - HA!  Plus I want to be strong for my father - he's a rock but I know that he's anxious as well.  

    Thanks everyone and God bless you all!!

    Kim 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited July 2011

    Haven't had a chance to check the board lately, things have been really crazy.

    My skin biopsies all came back benign.  Pissed that I now have 3 scars for no good reason, but trying to remember scars are better than melanoma.

    Finally got a call from gyn's nurse, they want to do a biopsy.  Not a surprise, but still....f*ed up! 

    Lsugirl, don't know where you got the idea that my lower girly issues were benign, there's been no determination yet one way or the other.  In holding pattern also.

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited July 2011

    Hi Ladies, I am sad to say that I am a member of your worry club.  Dx TN at age 49.  Chemo put me into menopause.  I have not had a period for 20 months and then out of nowhere I started bleeding.  Gyne tried to do Hystosonogram/endometrial Biospy in his office but could not pass the catheter through the cervix.  So Yesterday I had a D & C. 1 in 10 odds that this is cancer.  Like the rest of you I am worried. Because I am TN, I do not have the Tamoxifen to blame.  So awaiting biospy results which should be done by Thursday.  Hoping and praying I get good news.

    Navy

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  • greenacres
    greenacres Member Posts: 144
    edited July 2011

    Hi.  I am also sad to say I am in the same worry club as well.  I had BC/treatment in 2010.  My last period was 1/10 prior to me getting them (or so I thought) in March of 2011.  I'd get a full/fast one, then go a week and get another one.  Then I would spot in between on the months I was supposed to get a regular period.  (I went through six chemos in 2010).  I've discussed this with my ob/gyn since March and he said to come back in July, keep track of all spots/periods. I went back last week and he said it's time for an endometrial biopsy just to rule out uterine cancer.  ACK!  I had that this last Saturday morning.  I am awaiting results. I am 41.  My cancer was IDC/DCIS, Stage 1, Grade 3, ER/PR-, Her2+++.   I am very worried.  I'lk keep you all in my thoughts and prayers as well.  GOOD LUCK and I'll keep you posted as well as soon as I hear.  If it's not one thing it's another huh?  Sheesh!  I am also BRCA-.

    Sandra

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited July 2011

    Hey there Greenacres---We are doing the waiting thing together....this sucks.  We also have the GB Packer Backer thing in common.  Yes, I am in the Chicago area but married a packer fan 26 yrs ago. (can't stand the bears) and have loved those cheeseheads ever since.

    Take care, I will post tomorrow when I get news.

    Navy

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited July 2011

    BX results are in.  B9!!!!!! Yay!!!! time to get on gettin on.

    Good Luck to all waiting for their results.

    Navy

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  • greenacres
    greenacres Member Posts: 144
    edited July 2011

    Mine are BX as well!  Congratulations to you!  YAY!

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited July 2011

    Congratulations to you, Navymom and greenacres!!

    I went in for the endometrial biopsy last Fri morning and, well, no biopsy for me!  Apparently I have a fibroid blocking the uterine canal or some such, and the gyn couldn't get in far enough to do the biopsy.

    So now I have a choice between sonograms every 3 months to see whether the polyp grows, etc - or a d&c.  For the moment I've chosen the watch & wait approach, but that's mostly because I'm afraid of a d&c.  Gyn says she does them while I'm under anesthesia, early in the am on Thursdays - and that I'd likely want to take off both Thurs and Fri from work. 

    Does anyone know about d&c's - what they really involve, how much they hurt, what the recovery is like, etc?

    Gyn says there's only a 3% chance the polyp is malignant, and even if it is, these cancers are very slow-growing so if I wait 3 months and have no choice but a d&c at that point, the cancer wouldn't have progressed very far - so no real loss by waiting.  Opinions?

    Hate this!

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  • Jelson
    Jelson Member Posts: 1,535
    edited July 2011

    sweatyspice-

    My experience with D&Cs? I am not normally a sissy, but I chose D&C rather than an endometrial biopsy: "twilight" anesthesia, no pain! no nausea! I expected cramping afterwards but not even that.Was fine afterwards and certainly the next day.

    Julie E

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited July 2011

    My experience with D & C was like Yours jelson.  Piece of cake.  But I did take it easy for the 2 days.

    I lnow that Uterine cancers usually grow slowly but I needed info for my peace of mind.  Finding my BC early hopefully saved my life.  I am not paranoid but at the same time if its in there I want to know so i can have a game plan.

    Navy

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  • LisaEpstein
    LisaEpstein Member Posts: 19
    edited January 2012

    Hi girls I am 49 years old . Around 9 weeks ago i had uterus cancer very early stage all i need was a hysterectomy. Recently went for my mamogram and they did a biopsy cancer again. I had a lymsectomy last weeks the tumor was a early stage 2 size was 2.1 and a grade 3. I am er + and my lympe nodes are neg. I have clear margins. Next week I go to oncologist to see what treatments I need. Does anyone think I will need chemo?

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2012

    Forgot all about this thread! 

    After 6 months of nonsense, I finally had a d&c a little over a week ago.  Hopefully I'll get biopsy results by the end of this week.  Skeleton holiday crew and all that.  I hope for the miracle that it gets billed in 2011, which prob won't happen.  *sigh*   Not to mention that I hope it's benign....anyway....

    LisaEpstein, I'm so sorry to hear about your diagnosis.  It all just sucks.  As to your chemo question, you've posted in the DCIS forum.  We're stage 0 and chemo is not recommended for us, so while someone may stumble upon your post who can be helpful, most of the regular posters here won't know the answer (I know I have no idea whatsoever.)  You might want to post your questions about chemo in the Stage 1 & 11 forum, the ladies there can probably be a lot more helpful than we are able to be.  Wishing you the best! 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2012

    I am relieved to report that my pathology report says .... (drumroll)....benign!

    Tamoxifen has NOT given me endometrial cancer, at least not yet!  Smile

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  • asmd
    asmd Member Posts: 178
    edited January 2012

    I got uterine ca followed 6 yrs later by breast. Google Cleveland clinic and cowdens disease and see what u think. I had mutation but none of the skin lesions, big head and thyroid disease. Endometrial ca piece of cake compared to breast. No chemo. Pm me if u want

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2012

    I had my post op follow-up w/ gyn, now I'm awfully confused.  I thought I was having semiannual pelvic ultrasounds to check on uterine cancer risk from the Tamoxifen, but gyn said no, it was to screen for ovarian cancer b/c since I've had bc my ovarian risk is now elevated; and if as a byproduct of screening my ovaries they find something going on in my uterus (like the polyps) they can't just ignore it. 

    So they're apparently really scared of ovarian cancer and think endometrial cancer is no big deal.  I don't want to tangle with either of them, but I'd rather not remove any more body parts.

    Having a consult with onc in the am, to discuss whether to go back on Tamox, switch to an AI, or blow it all off; and to go over my risk levels for ovarian & uterine.....JOY!

    I was wondering if the reason Tamox is prescribed for premenopausal women was b/c the uterine lining will increase, but will be sloughed off monthly - making it less risky?  I'm just guessing...no real idea.  Now that I'm a year into menopause maybe I should go to an AI....?

    Gyn said it was perfectly fine to go back on Tamox, and that "some people just make polyps."  If that's true, will I be having yearly D&Cs???

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  • denise2010
    denise2010 Member Posts: 1
    edited January 2012

    I'm on tamoxifen. my gyn will not remove my female organs because he doesn't believe in it.  I have some sort of cyst on my left ovary and a fibroid in my uterus.  My oncologist says do it, my regular doctor says do it, but he says no.  I'm looking at another opin.  My breast aches like a toothache constantantly I have an area that feels suspect that my radiation oncologist is watching.  My right shoulder and arm have developed movement problems.  Is this all my imagination or is this really something that will happen?   My radiation finished in 02/11

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2012

    Denise, welcome to the site.  I'm sorry you're having so many problems.  When you say "is this all my imagination or is this really something that will happen" I'm not sure what you mean.

    Is what something that will really happen? 

    If you're asking about endometrial cancer, to the best of my knowledge both cysts & fibroids are benign conditions and there's no reason for you to be worrying about endometrial cancer right now.

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