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Stage 1, grade 1 and pre-menopausal

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  • baseballmom
    baseballmom Member Posts: 9
    edited September 2011
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    Maybe it's birthdays!  I would love to stop having them now that I'm 46.  I had the MRI that found my cancer on my birthday!

  • Annicemd
    Annicemd Member Posts: 292
    edited September 2011
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    Good so it's birthdays we should be avoiding... I'm glad as I didn't want to conclude I had to give up alcohol!!!!

    Hugsxxxx

  • Scuba_duchess
    Scuba_duchess Member Posts: 435
    edited September 2011
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    Ladies, just a question for premenopausals, I went off the pill (after years on it) in mid-May one biopsy id'd ILC in left breat. Am 46. Lumpectomy on 7/5, bad margins and family history, BMx on 8/8/11. Periods came back but am having cramping so bad it is impacting my PT and life (had LAT reconstruction with BMx). This is 3rd period since I went off pill but this is awful, I never had cramps my whole life. Anyone else go through this?



    Am seeing a reproductive specialist at my Ob/Gyn in October, birth control just was a lower priority. See the oncologist tomorrow, tamoxifen is definitely in the plan, not started yet.



    Any experiences on this would be welcome, am barely functioning due to discomfort right now. Thanks!

  • coraleliz
    coraleliz Member Posts: 158
    edited September 2011
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    When I stopped birth control pills several years ago, I remember experiencing cramping far worse than in my pre-pill days. The days I didn't have my period, I had pelvic pain that wouldn't relent. I was told to go back on the pill(pre-BC) & when I refused, counselling was suggested. I soooooo hate gynecologists!

  • Scuba_duchess
    Scuba_duchess Member Posts: 435
    edited September 2011
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    Thanks!



    An oopherectomy is sounding better and better, past kids, want as much of my life back as possible. Will have to see if this eases in the next months before I see specialist. Initial thought was v surgery for DH, but that won't help me. One bit with cramping!

  • Annicemd
    Annicemd Member Posts: 292
    edited September 2011
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    Hi scuba,

    Our bodies change over time and the cramping pain can either get better or more commonly worsen as we head towards natural menopause. As you are ER positive and going on tamox and having gynae symptoms I would definitely consider chemical or surgical menopause. As you have gone through so much recently you might want to start with Lupron which will stop the symptoms (hopefully) and you can then plan oophyrectomy when you feel ready for another operation.

    As you are 46 there will be minimal risks of inducing a slightly "early" menopause, your gyn will talk you through that. I am 42 and have gone straight for chemical menopause without hesitation, I am medic and know all the risks.

  • Scuba_duchess
    Scuba_duchess Member Posts: 435
    edited September 2011
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    Annicemd



    Thanks, was leaning that way. Am still in hospital waiting for CT scan results but it appears this is a case of kidney stones, not directly related to my BMx, etc. I had just gotten my last Pratt drain out on Tuesday, gotten my period, then this hit. Had stones one tiime previously, hurts like a bear but you get throguh. Got pain relief now anyway.



    None of that negates points above.will be very aggssive with October consult - Not sure about Insurance coverage, but may be worth it for my own life quality. Heard the oof isn't too painful.



    Thanks for the support ladies, as always, even I the dark of night, there is so done to listen and help! Lisa

  • Annicemd
    Annicemd Member Posts: 292
    edited September 2011
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    Oh Lisa Kidney stones are VERY painful, so maybe your abdominal pain has been kidney stones all along? I hope it all clears up quick and one less thing to have to deal with

    Annice

  • Scuba_duchess
    Scuba_duchess Member Posts: 435
    edited September 2011
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    Appears as such, stone passed, UGH! Now back to the business of healing from BMx and rebuilding my LAT muscles. Onward and upward, this was just a stone in the road!, if you forgive my drug addled pun.

  • SpringFever2011
    SpringFever2011 Member Posts: 5
    edited January 2012
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    I, too, fall into these stats ...... doing the Luperon and Femera ..... Dx at 39 ....... I am curious about some of the long term concerns of these stats ........ What makes me nervous, however, is the long term SEs of chemically induced menapause at 39 .... bones? heart? etc ...

  • Druanne
    Druanne Member Posts: 74
    edited January 2012
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    Hi! I am 41 and premenopausal too! Waiting to start radiation.......no chemo because my Onco score was so very low......I am very concerned about taking Tamoxifen :/ and I don't want to have my ovaries taken out like my Onc has suggested either.......she did say she would give me until 50 years old........but really wants them out now.........I am not willing to give them up though...

  • tunkylala
    tunkylala Member Posts: 18
    edited January 2012
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    Hi Druanne,

    We have about the same diagnosis, treatment, and low oncotype! I was concerned about taking tamox. I read all of the pros and cons. In the end, I decided to take it for 5 years. I have been on it since July. The SE's were not terrible but I did have some. My body is regulating to Tamox thankfully and many of the SE's are gone. My decision in the end was based on the fact that I did not do chemo and my onco asked me how I would feel if I did not take it and it came back.  

  • Druanne
    Druanne Member Posts: 74
    edited January 2012
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    WOW Tunky we DO have almost the same diagnosis!! I am scheduled for 33 rads with 5 boost rads included in that number I think.......So Tamox isn't too bad?? I don't tend to get too many side effects from things I have taken........so I might as well try it......I can always change my mind :) Your Onco has a good point.....even though we could get it back even with taking Tamoxifen.......:/ Cancer sucks!

    :)

    *edit was for fixing a typo* :)

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited January 2012
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    hi  Tunky and Druanne- I also have a low oncotype score of 1,stage  1 and grade 1. After trying tami and being depressed, super dry, brain dead ... I stopped. My MO supported the decision and disagreed with another MO regarding ovary removal....My MO thought that my #'s were so low that it was not worth it...(heart and hip problems...) My MO was brilliant and just left the area and moved across the country...I cried.

    Anyway, I take: natures way dim plus, metformin..... and still wonder if I have done enough, but exercise, no red meat, little if any liquor..... is my lifestyle ... All insight is appreciated..

    thanks,

    chocolate

  • Galsal
    Galsal Member Posts: 754
    edited January 2012
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    This is an interesting thread.  Unfortunately, I don't have enough information yet to know where I fall into this.  For now, it appears to be Stage 1 although since the SNB and BMX will be done 2/10, we wait for further data.

    Fwiw, dx was 12 days before my 52nd birthday and I'm not fully menopausal yet.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012
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    Good thread - glad that I found it.

    I'm peri-menopausal, diagnosed at age 49.  Stage 1, Grade 1, had a double MX - multi-focal disease of one breast, had a prophylactic on the other.   Oncotype dx scores 11 and 14, no chemo or radiation.  Started Tamoxifen 10 days ago, so far so good.  My oncologist has recommended ovarian suppression or an oopherectomy, I'm considering having an ooph this summer.  

    I've always had lumps and bumps over the years - had a surgical biopsy of a fibroadenoma at age 19, which turned out to be benign.   Very dense breast tissue - had MRI's as well as mammos for a few years but opted out of having MRI's a few years ago because I was paying for them out of pocket.    Took birth control pills for 15 years - breast fed 2 kids one year each.  I've always been a healthy eater - label reader - buy organic when possible - moderate alcohol.  I get plenty of exercise, and am a pilates instructor.  In thinking about how to improve my lifestyle, I'm not sure what to change.  I thought that I was doing everything right.   

    I'm curious why Stage 1, Grade 1 is considered an "old ladies disease"? 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012
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    I'm curious why Stage 1, Grade 1 is considered an "old ladies disease"? 

    Because younger women tend to get more aggressive cancers (Grade 3 and/or HER2 positive). and older women tend to, on average, get more indolent tumors (Stage 1, Grade 1), that's why they are referred to as an "old lady's disease."  They also refer to them as "lazy" because they are slow growing. 

  • tunkylala
    tunkylala Member Posts: 18
    edited January 2012
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    voraciousreader: it is my understanding that younger womens BC is more agressive because of the presence of Estrogen (regarding the hormone positive cancers).

    Chocolaterocks: How are you doing after having your ovaries removed? I have thought of doing this. My cancer was a grade 2, so I felt I could not risk not taking tamox. The tamox is not horrid for me, but I am brain dead (word recall problems and memory) and I am super dry too! Eyes, skin...I had hair loss in the beginning, but I started taking Biotin and it worked wonders.

  • tunkylala
    tunkylala Member Posts: 18
    edited January 2012
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    Chocolateroacks:   one more thing...when I got my oncotype score (2) I considered not doing Tamox because it was so low. But my MO explained that the oncotype score is based on the assumption that you wil take Tamox for 5 years. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012
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     Tunkylala:

    ""voraciousreader: it is my understanding that younger womens BC is more agressive because of the presence of Estrogen (regarding the hormone positive cancers)."

    Yes.  However, as you can see from JoyH's question, SHE is premenopausal, so you would assume that if she had more estrogen floating in her body, her tumor would be more aggressive.  That doesn't explain WHY Stage 1 Grade 1 breast cancers are called "Old lady's disease."  Stage 1 Grade 1 tumors are referred to "Old lady's disease" because MORE older women get indolent breast tumors.

    BTW....I was 53 and premenopausal when I was diagnosed with a "lazy, Old Lady's disease" and have been doing O/S for two years.  Next month, when I have my six month visit with the MO, we'll decide if I should continue.Kiss

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012
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    voraciousreader   Thanks for the explanation - had no idea that Stage 1, Grade 1 was more common in older women.  My oncologist said that younger women are generally thought to get more aggressive BC,  I'm thankful that this is not the case for all younger women.   It does make one think though - why the newer phenomena of younger women getting indolent tumors?   

    tunkylala   I started Tamoxifen almost 2 weeks ago and am feeling dryer eyes and skin.  What is Biotin?   

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012
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    Joyh... The short answer to why younger women are being diagnosed with more indolent tumors is due to screening. Likewise, there are older women who die of other diseases and on autopsy, they find they had indolent tumors.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012
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    voraciousreader      I understand that early screening would mean BC is caught at an earlier stage - but that wouldn't change the fact that the tumor would still be Her2+ or Grade 3.   It's the Grade 1 that is confusing.   Do you think that many Grade 1's remain lazy and without metastisizing,  would show up on an autopsy without having been detected earlier?  

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012
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    Again, the short answer to your question is yes. Keep in mind though, doctors don't have a crystal to know which will metastize, just like with DCIS they don't know which will become invasive... So everyone gets treated. Read Dr. H Gilbert Welch's book Overdiagnosed for the very long answer.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012
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    Hmmm - interesting.  I'll check out the book.  I wasn't ready to take a chance with Grade 1, truthfully I had no idea what I was dealing with early on.   Makes me think of the many men going through prostate cancer treatment, some of them, I hear, needlessly.  

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited January 2012
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    Be careful about this Grade 1 thing, and basing your treatment on its reputation for indolence. Yes, it is slower and more pedantic, but it is still cancer and wants to reproduce.

    Remember that every woman who is Stage II or Stage III at diagnosis, passed through Stage 1 to get there. I believe that Stage 1 has always been a possibility for younger women, but this population didn't receive early screenings so was unable to "catch" it before it grew up to be a larger tumor.

    Good luck to you all as you decide what your treatments should be.

    *susan* 

  • tunkylala
    tunkylala Member Posts: 18
    edited January 2012
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    joyh1109

    Biotin is a suppliment. Its in Hair Skin & Nails (I get at costco). You have to take 5000 mcgs a day to see results. My hair stopped falling out and new growth is coming in. I had to go to the eye dr for drops..my eyes are super dry and I hate it!

  • Sherryc
    Sherryc Member Posts: 4,503
    edited January 2012
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    I am also in this group, stage 1, grade 1, but my onco score was 23, and pre menopausal.  Still choose not to do chemo even though sometimes I wonder if I made the right decision.  Had a lump and rads and have been on tamox almost a year.  I am getting ready for a BMX in March.  Long story but BS did not give me all my options up front nor did she tell me I would have to have MRI's yearly because I have extremely dense breast tissue that are not readable by mammo.  I have already had another scare in my so called good breast and MO wanted the tumor out ASAP.  Luckily it came back benign but I decided then to go forward with a BMX with reconstruction.  I am not highly ER+ so that is why my ocno score was so high.  I was concerned about it not being high as tamox seems to work better on those with high ER+, but MO said it is like being pregnant you either are or your not and the tamoxifen still works. I was 48 at diagnosis and 49 now.  so glad I found this thread.

  • Sherryc
    Sherryc Member Posts: 4,503
    edited January 2012
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    Forgot to add that since the Zometa study came in so positive for pre menopausal women cutting the recurrence rate my MO is starting me on this Feb 10th.  Since I did not do chemo I need all the help I can get. One infusion every 6 months for three years.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012
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    I am doing aggressive treatment for my stage 1 grade 1 tumor. Like I said, the doctors don't know which ones will progress and I am risk adverse.