Posted on: Aug 23, 2011 03:25AM - edited Jun 12, 2012 03:18PM by Annicemd
It has struck me that most grade 1, stage 1 sisters seem to be post-menopausal (aka low estrogen) and younger women seem to be more often stage 2/grade 2. I am 42, recently diagnosed ER positive, still full of estrogen and becoming a little paranoid that there is something different about me or my cancer! I am not having chemo as i dont qualify for it. Low oncoDX score etc. On tamoxifen but am a little worried that my long term outcome may be worse because am am in no-mans land!! Are there any sisters out there in similar situation??***************************************************************************************************
May 2012 Decided to update this post as your responses have shown me that there are many of us who started out premenopausal with stage 1 grade 1 disease! What has become evident is that the choices for treatment can be tricky for us. Dilemmas include whether or not to use ovarian suppression or ooph (the definitive study - the SOFT trial will start to publish results hopefully around winter 2013), whether to do chemox if oncotype is intermediate (there is a study looking at this -The TAILORx but results are years off, whether adding zometa to treatment helps reduce recurrence (data remain somewhat conflicting although there appears to be a benefit for women over 40 years provided they are also treated with ovarian suppression), whether ovarian suppression alone or in combination with AI is a good alternative to tamoxifen for those of us who can't take/tolerate tamoxifen (TEXT trial results anticipated with SOFT results) and does Cyp2d6 status matter? So if you are stage 1, grade 1 and diagnosed when you were pre-menopausal you are definitely not alone. There is not a "one size fits all" answer to how we should be treated but hearing the treatment routes others have chosen does help with decision making... and optimism, there are 20 year survivors posting here! >
Posts 1561 - 1590 (1,691 total)
Aug 14, 2015 03:31AM Tresjoli2 wrote:
so I am new to this and still finishing chemo. I started Lupron, and my doc wants me to do ovarian suppression for 2 years with tamoxifen. She said that we would need to discuss after that because there are many benefits to having your ovaries function, and she believed I had many many more years of being premenopausal left in me. I'm hoping two years from now we will have more data and my answer for they long term era will be clearer
Aug 14, 2015 06:16AM Mabs wrote:
Thank you for your explanation Annice!
Aug 14, 2015 08:27AM ReneeinOH wrote:
I was a bit disappointed that I had to bring up the SOFT trial results. My onc and her nurse were going to keep me on this treatment.
Oct 18, 2015 06:24AM PoohBear-61 wrote:
Hello Annice ...
Well I just got my period back, 9 months after last zoladex shot .
if I remember correctly yours came back too ?.
I am 49 and my thought process is to just stay on tamox for now .
Will definitely talk to my onco but was wondering what you did in your case ....?
( if you don't mind sharing ......)
Oct 18, 2015 11:00PM Annicemd wrote:
I am now just on tamoxifen, and premenopausal again. It really frustrates me that there is no answer to whether outcome is better long term for early stage BC with ovarian suppression or not. For younger women the long term risks of inducing an early menopause such as bone thinning and premature vascular disease are real. My specialists all advised me that in view of my stage and my age I should stick with tamoxifen alone. It is nice not to have the hot flashes any more 😄. I still think that having ovarian suppression for 3 years will have protected me and hopefully helped dispose of any nasty cells that might have been around after initial treatment. But who knows
Oct 19, 2015 01:27PM PoohBear-61 wrote:
As usual you're very helpful .
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Jan 21, 2016 05:24PM - edited Jan 21, 2016 05:38PM by Fourminor
OK, I want to know if I am the only woman with this problem. I have been doing Zoladex monthly for one year now and have been on arimidex since March. For the past few months, my MO has been concerned that my estrogen levels, while testing as postmenopausal according to the lab range, were not low enough, and have been ranging from 17-50. My insurance changed in January so my last blood draw went to a new lab where the value came back out of postmenpausal range. Had a pelvic sono today in preparation to start Tamoxifen, and sure enough, I saw follicles in both ovaries. This is despite not menstruating for the past year and having still daily hot flashes and thinning hair.
Is it possible to be resistant to Zoladex? My next thought is to think about ovarian removal, but I'm changing jobs now and need to table this whole thing for a while.
Anyone else fail OS?
Jan 21, 2016 11:27PM Annicemd wrote:Fourminor I have never heard this happen however the ovarian findings may be cysts not follicles and the lab with the detectable estradiol levels may be interference/artefact as your symptoms suggest your estrogen levels are v low. Have you had an Endo look over all the results? We usually discuss with endo biochemists and radiologists in MDT in cases where clinical/blood works/scan don't match up. It is possible to have very low detectable estradiol levels on zoladex as the zol only suppresses ovarian sources of estrogen but to have follicles Would just not fit so I wonder if the scan findings need to be reviewed. Annice x
Jan 23, 2016 07:07PM Fourminor wrote:
I don't know, my estradiol has been concerning her for months, on monthly draws, and the last one was the first from a different lab where the value was out of range for postmenopausal. As far as my ovaries, well, I am a radiologist. I decided not to mention it to the tech since I went to an office where I don't know anyone. I saw the last couple of images when I got up though and was shocked to see follicles. I asked for a copy of the exam but I can't load it on my mac. We're having a blizzard in nyc right now I have to look at it on monday at my office.
Jan 24, 2016 01:07AM Annicemd wrote:
Fourminor, if it is follicles I would ask your MO to switch the arimidex to tamoxifen
Jan 27, 2016 02:20PM RainDew wrote:
Fourminor - you are not alone - same happened to me. I switched back to tamoxifen for now, while I weigh the pros and cons of the ooph.
Had a very long conversation with my MO about this - apparently it isn't as rare as you would expect, particularly in women under 35 (I certainly wasn't the first case in his office)
Jan 28, 2016 05:23PM Katja23 wrote:
Yes, I am Stage 1, grade 1 and pre-menopausal. Next week I have my first visit with my oncologist post-lumpectomy (after an initial pre-surgery visit), and thus the first visit following a definitive diagnosis (only 7mm and clean sentinel lymph node). So, what questions do you suggest I ask her?
(I am 50, but no signs of menopause yet, and my mother was late with menopause.)
Jan 28, 2016 07:37PM - edited Jan 28, 2016 07:38PM by Fourminor
Thanks Annice. It looks like 3-4 follicles in one ovary, maybe one or two in the other. I don't know, but i took my first tamox tonight. It would be nice if sex wasn't utterly horrible, so hoping that this has some positive outcome.
Nov 1, 2016 05:07PM poopysheep wrote:
hello all... i'm new :) i've been on the fence about whether or not to do the ooph or tamoxifen.. just been reading the convo here...
i've noticed not very many stage 1/grade1 ladies are HER2 positive...
Nov 1, 2016 06:42PM Moderators wrote:
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Nov 1, 2016 11:58PM Annicemd wrote:
Welcome, Poopysheep, the data for tamoxifen continue to be published and are very strong. Ooph would obviously put you in permanent menopause. Depending on your age this can have long term effects on bone health and strength and cardiovascular risk. The effects are greater the younger you are. I don't know your age. What did your BS/Onc suggest? If you try tamoxifen and don't get side effects then that might be your best option. If it gives you side effects so you can't take it then ooph is certainly an option.
It's good to have options :)
Hope that helps
Nov 2, 2016 06:16AM KathyL624 wrote:
Fourminor, was your onc testing your estrogen levels as a routine matter? I have been on lurpon shots for 5 months, and my doctor just switched me to an AI since she said my ovaries should be fully shut down by now and I haven't had any trace of a period. Now I am a bit worried after reading these posts--can either you or the other posted in your situation share how you found out the ovarian suppression wasn't working?
Nov 3, 2016 03:23PM poopysheep wrote:
So after being told i was HER2 + then being super confused about how that was possible with a grade 1 tumour I called back to request a confirmation test only to be told they gave me the wrong information and I was actually strongly HER2 NEGATIVE... sorta pissed but a huge sigh of relief!!!
Anyway.. they are not ordering an Oncotype DX test since I'm not even a candidate for chemo, only radiation and then hormone therapy. I guess my question is... what if I just didn't do radiation.
Nov 3, 2016 05:21PM - edited Nov 3, 2016 05:22PM by Laurenann78
I'm new to the club! I was a bit shocked when I met with MO and AC-T was recommended. I'm curious if anyone has declined Adriamycin and only done TC. I am also curious if anyone knows why one is chosen over the other for treatment. I had very clear margins and it just seems like a lot for minimal disease (tumor was 1 cm exactly), node negative.I'm doing whole breast rads and endocrine therapy as well. Mammaprint was sent and I am awaiting results. I am also getting a second opinion. Oh and I'm 38. :)
Nov 3, 2016 07:44PM - edited Nov 3, 2016 07:49PM by Tunegrrl
Laurenann, i was initially offered a choice between AC-T and TC, but in the following appointment it was very clear the oncologists thought TC was the right choice for me. Which is what i had been leaning toward anyway, but wanted to see their cards first.
In my case, the TC made sense because i am also getting Herceptin, which can be hard on the heart. Since AC-T is known for cardiotoxicity, it makes sense to protect my ability to stay on Herceptin, which is almost certainly much more important than the small difference in effectiveness between TC and AC-T.
Now i'm wondering whether to stay on Lupron for a year or two, in addition to the Tamoxifen i'll likely be encouraged to take. Last week a doctor at a women's health clinic suggested i allow my 3-month Lupron to end at the end of January and then just see what happens for a bit. If i don't have cycles anyway after that, maybe no need to get the Lupron shots. No problem hopping back on, she said. Makes sense to me, and unless other info comes up that's likely what i'll do.
Nov 4, 2016 12:27AM Annicemd wrote:
Poopysheep, radiotherapy reduces local recurrence risk if you have had wide local excision rather than mastectomy, even if margins are clear. It's not worth risking the trauma and additional risk of a local recurrence by not having radio
Nov 4, 2016 12:34AM Annicemd wrote:
Laurenann, I think chemo recommended because of grade 2, PR negative and young age (<40)
The regimens do vary and your Onc is the best person to quiz about why a particular regimen has been recommended over others...
Nov 7, 2016 09:46AM Mabs wrote:
Laurenann, I'm 38 too, was 36 when diagnosed, no chemo due to low oncotype. Did you do oncotype test?
Nov 10, 2016 09:17AM poopysheep wrote:
Met with RO and MO .... I argued with both so long that they finally agreed to order an Onco test for me. Both said that my age (43) and a grade 1 tumour was unusual so they are also sending my pathology for secondary review. the RO wants to do 33 rads (25 whole breast and 8 boost) and then the tamox for 10 years.... however there doesn't seem to be much statistical data out there for women with low low grade tumours who are pre-menopausal. I wanted some information on what the actual statistical advantage I am at from doing radiation (and damaging 10% of my lung) and going on hormone therapy for 10 years...
At this point I am seriously considering no further treatment. no rads and no hormones. I found this tumour myself, I would have never gone for a mammogram until I was at least 50... and this thing was so slow growing (mitosis score of 1) that we would have found it at 50, it would have been maybe bigger and maybe a bit badder but i would have had 7-10years of my life not living as a cancer patient and the entire outcome would likely be the same in the end.
Nov 10, 2016 12:42PM labelle wrote:
You may want to investigate the option of having RADS in the prone position to avoid lung damage. Not available everywhere, but I did my RADS in the prone position-due to BC on the left side I was worried about my heart as well as lung.
Nov 10, 2016 01:03PM KathyL624 wrote:
Are you being treated at a local hospital or a university or NCI hospital? I was 38 when diagnosed with a Stage 1 Grade 1 tumor and they didn't question the pathology, just told me I was lucky because younger women typically have more aggressive cancers. Also, oncotype was automatically ordered, despite my stats and the mitotic rate being 1.