Stage 1, grade 1 and pre-menopausal
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zoey, sorry that happened but thanks for sharing your story. (I started tamox in mid-July and the SEs are starting to kick in so I've been second guessing that decision. Not anymore!) I'm 90% ER+.0
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Hi All
My question is Annice- so are you doing the lupron shots?
Ladies, I am seeing my MO this week- probably for the last time since I am not taking tami and so MO may no longer see me. I am still considering lupron. As I stated in an earlier post- I take the inderol and also Metmorfin. I did the bilateral. I must say my stupidity left, the aches and pains greatly decreased, the severe dryness is gone and I stopped crying (thankfully).. so tami would be a last resort.
Any more ideas?
thanks
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Dontworrybehappy, thank you for all your words of support and reassurance to us newbeys, I did love reading your post, you put it all into perspective,
Thank you xxxxx0 -
Karen, so sorry to hear you got a new primary. Deciding on the best treatment is a very individual thing and we have to be comfortable with it as it is our own body and our individual legacy and we will all choose different routes and have differing treatments because there is not a clearcut answer or cure here. I wish you very well with your treatment going forward Annice xxx
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Hi chocolaterocks,
Yes I had my first zoladex (same as Lupron) shot last week. It takes about 2 weeks to induce menopause so no symptoms yet!
I am a baby at 42 to get old lady's cancer (aka grade1 stage1) and I don't believe there is enough data out there on long term outcome for very pre menopausal women with this type of BC. Maybe that's because it's a newish phenomenon because something in our environment has caused an increase in this type over recent years/decades. At my age it is usually stage 2' grade 2 or beyond.
So my intuition tells me to get rid of my estrogen to avoid a late recurrence as I am so ER +++. I am not sure I would do is if I were 5 or 10 years older and perimenopausal. I may be wrong to do it and the SOFT trial will answer the question in a few years but I need to act now or never on this. That does not mean it's the right decision for everyone. As I have previously mentioned I am an endocrinologist and deal with menopause in my clinics every day, so I know everything about it and it does not scare me. However I am pretty sure I will suffer with symptoms esp low mood which is my weakness. Chocolaterocks the side effects with Lupron may be similar to tamoxifen, but you never know until you've tried I suppose.
With this disease, because our outcome statistics are so good the balance of risks between the disease itself and the side effects of treatment have to be weighed up very carefully!
Go with what you feel most comfortable with!
Best wishes
Annicexxx0 -
Hi sisters,
The zoladex (Lupron) has been ok for me. I have had a bit of aching in my muscles, and some hot flashes but not too bad. I think I May have been perimenopausal before this without knowing it as as I feel calmer as hormones now flat rather that up and down! Menaupause is not all bad!!
Annice0 -
Annicemd-I took Lupron during infertility treatments 15yrs ago. I loved it! I'm actually looking forward to menopause. I mentioned this to my MO & I got the most strange look from him. Glad you're doinng well on it. My problem is getting an appt with the MO. I think because I'm grade 1 & not much of a priority. 1st available appt 4 1/2 weeks away, so do I really have cancer? need treatment?........
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Hi coraleliz,
I can't believe your MO is not prioritising you! BC is BC after all whatever grade/stage. Good luck with the Lupron! I also think my migraines will be much better as they are estrogen driven. Even my husband, who was dreading me becoming menopausal, is beginning to like the idea!!!!
Xxx0 -
I am (just) 44 and have stage 1 grade 1, ER/PR+ and HER2 negative. I have been taking tamoxifen for a month and am sheduled for a bilateral mx on the 15th. My onco score was 17, so still not sure on the chemo. It is all very confusing and SOOOO many opinions out there. Not doing radiation. My tumor was found on my one and only mammogram and was removed during an excisional biopsy. They weren't able to get a tissue sample during the steriotactic biopsy... lucky me. I have implants already and the radiologist couldn't get in close enough without hitting my implant or an artery.
Don't know about nodes yet... they will biopsy when I go in for surgery. I did have the dye injected and images showed nothing new. So hoping/praying nodes are clear. I have two little boys ages 6 and 3 1/2, so I am willing to do whatever will keep me around for as long as possible. Ahhh, the joys of breast cancer!
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oh, and my tumor was 1.2
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Hi ladies, I'm new to this forum but I'm glad I found it. I am 31 and diagnosed stage 1 grade 1. I opted for a bilateral mastectomy because I am BRACA2 +. I have been on other forums and most of the pre-menopausal women have either a later stage, a higher grade, or both so thier treatment options are different than mine. I am ER+/PR+ and so far my surgeon feels my onco will recommend tamox for 5yrs instead of chemo. But I don't meet with my onco until after my surgery which is next week. I'm recently married and I hope to have a family one day so my question is ....Does anyone know how tamox effects your fertility? Has anyone stopped taking tamox in order to have a baby?
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Hi!
I was diagnosed 4 years ago with Grade 1 DCIS and Grade 1 IDC ...2 tiny tumors...4mm and 1mm. Glad that they found them that small.
I was recommended Tamox and no chemo as oncologist said chemo was little benefit.
I read somewhere that Chemo works better on faster growing cells, like higher grade cancers and that with grade 1 it is rather slow growing so chemo has less effect. Again..I read this somewhere when I was first diagnosed,,I cannot quote the source...and who knows.
Anyway, 4 years later on tamoxifen and so far so good.
I also know many younger women with low grade breast cancers...1 of which I worked with who had a much larger tumor and tamoxifen and 10 years out is still all good.
I think there are a lot of us out there...young ladies with old lady cancers.......
Hugs and be strong...Kosh
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NYnewbie, I saw at book titled something like "Having Kids After Cancer." I only skimmed it since this isn't my direct concern but I was curious. They had story of a woman choosing to take a break from tamox to have kids. I don't have more info but it sounds like you're not alone and hopefully your docs can help.
koshka1, yeah, my MO said chemo works better on higher grade tumors. I love this "young ladies with old lady cancers."
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Thanks Peggy! I will check that out!
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Hi mustangsally67,
You have very similar stats to me. Did you decide on Bilat MX for any other reason than high risk non affected breast? It seems that in US this treatment is recommended often but in UK it's not offered unless BRACA positive. My MR scan shows my other breast has borderline changes and I don't know whether to push for mx on the other side or not as it has not been offered so far.
Re your oncoDX score that's tricky as the TaylorX study is looking at effect of chemo for scores between 11 and 18 but the jury's still out. I had scores of 8 and 1, as had 2 tumours decided to go for chemical menopause with zoladex as well as tamoxifen although not sure if definite benefit as the jury's also still out in the SOFT study looking at these treatments together! Roll on all the results of these studies!!
Good luck with treatment plan0 -
Hi NYnewbie,
I think the gynae docs prefer to use ovarian suppression with Lupron/zoladex if a pregnancy is desired in the near future or they may suggest tamoxifen and then Lupron nearer the time if you want to wait a while to become pregnant or they may suggest both treatments together as you are young and BRACA+.
Chemo just does not seem to provide benefit in terms of outcome in most grade1,stage 1 tumours unless the oncoDX score is high, which it is usually not. Also chemo does have risks and can result in late complications many years later so the decision on chemo has to be balanced carefully, especially in younger women
Good luck with treatment plan0 -
Good morning Ladies!
It does my heart good to see a gathering of those with a diagnosis similar to my own. We seem to be the exception here no matter what the menopausal status is. I had just turned 49 a week before I was diagnosed, but had gone into a natural menopause 8 months prior. Technically, I'm probably in the older category because of being in menopause at diagnosis, but if I had gotten a mammogram just a year earlier, I would have been pre-menopausal since I was still having fairly regular periods at that time. And since a grade 1 tumor likely took quite a few years to reach 1 cm, I was definately pre-menopausal when it initially began forming. I had a mammogram in 1996 and then never had another until the one that diagnosed me in 2004 ...and the only reason I finally got that one was because my PCP hounded me about it every time I saw her. I brought her flowers after the diagnosis because I'm sure, had it not been for her badgering me, it would have been many more years until I finally got another one.I have very non-dense breast tissue (old lady boobs) and always have had even when I was much younger. Never any lumps or bump, (never any perkiness either, darn it! ). I'm very curious to know if any of you have the same?? In the 7+ years I've been reading this forum, I can't recall ever seeing anyone else mentioning having non-dense breasts.
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Hi there, not for me, but I have a 28 year old friend who is going through treatment. Already completed her surgery and chemo. Is on tamoxofen. She wants to get pregnant. Prior to all of the treatment, they froze her eggs. Then they will take a break from the tamoxofen for the pregnancy. Not sure what the standard of care is, but that's her experience.
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Hi ALL!
I am 36, stage 1 grade 2 IDC (premenopause), er/pr pos. Both my surgeon and med onco said taking in to account my age, grade, and hormone levels that I would be getting chemo. Oncotype DX came back at a 2, which shocked everyone. So now, no chemo, just radiation and tamox. I still feel a little uneasy about not recieving chemo and I have expressed this. They keep saying its all about statistics and that chemo would do no good. I have been on Tamox now for 2 months. I cannot say its the most pleasant drug to be on, but the alternative is worse. Getting used to my new normal.
Thank you all so much for sharing your experiences.
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Hi mariekelly,
It's great to hear from sisters who are long term survivors (I call 7 years long term as a am a 2 month survivor so far!!!)
The density issue is interesting and the whole 'why we pre meno sisters get old lady's disease' is constantly hounding me. I think they said my breasts were very dense and one of my tumours was missed on mammo as mammos are not that discerning for dense breasts. Can't find data to explain what causes dense/non dense breasts.
I am tiny framed and skinny, v healthy living, drink moderately, never smoked and breast fed both my babies for a year each. The only thing I did that might be perceived as unhealthy was take the pill continuously for 12 years from age 18 to 30. I was convinced that must have been the cause but there are no strong research data to support this at all. I would love to find if there is a string in common with all us pre meno early stage sisters that the oncs are missing
Annice0 -
Annicemd,
I too feel like the pill played a roll in my cancer. I asked my onco about this and all he said was there in no conclusive evidence, BUT it was an ingredient that helped the cancer grow. I took the pill on and off for about 15 years. I had a very hard time with it and had to get a low-dose pill. I had major SE's like morning sickness, leg cramps, etc..We need to find the common denominator. Also, I have NO family history.
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Yes I have no family history too, in fact no known risk factors (except the pill)!
Sisters why did we get this disease?????0 -
I was on the pill for 15 years because of irregular periods. My doctor claims that it had nothing to do with it but I feel it really did especially since they took me off it right away and I am no longer allowed to take any type of birth control for the rest of my life. Although with all the side effects of the treatments I'm not sure I will ever need birth control.
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Yeh, me too! No family history, Non smoker, eat well, birth control from 22-37 more or less. First child was at 37 and second was at 40, those are considered risk factors. Vitamin D was low at 32mg/l, and I drink a few drinks instead of ONE! Not like I am a heavy drinker. I used to do body building shows (natural) and just finished 3 triathlons in the past 6 weeks since my diagnosis. Take that BC!!! I don't know why WE are the chosen ones?!!!
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Hi,
I forgot to mention on my earlier post that I was diagnosed 1 week from my 39th birthday...."young lady with an old lady cancer".......it was my first ever mammo too!
Anway,,,I have taught aerobics, been lean, ate organic for almost 20 years and still got this old ladies breast cancer! Oh yes..no birth control...couldn't take it cause it made me very "itchy" with a "b."
Hugs.....Kosh
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Well we all seemed the picture of health before this stinker hit us! I feel comforted that I am not alone but can't help feeling angry about how unjust it is!
Annicexxx0 -
my diagnosis was 4 days before my 44th.... 1st Mamm ever!!!! I was pregnant and nursing at 40. Nursed both boys for over 2 years.. I read that Sheryl Crow was diagnosed 5 days after her 44th. She went with Rad/lumpectomy.
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Yes, my onco took me of the pill as soon as I was diagnosed. Never allowed to be on it again.
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My surgery was the day before my 42nd birthday!
Yes Sheryl Crow must have been early stage too as she didn't do chemo.
I know the birth control pills can't be the whole story but I see estrogen as my enemy now. Not sure if that is linked to the dense breast story
Xx0 -
I also do buy into the vit D deficiency story. I am sure I have been vit D deficient most of my life having dark skin and living in the UK!
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