Stage 1, grade 1 and pre-menopausal
Comments
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Hi -
For those on Lupron shot for ovarian suppression, what is the dosage that you are on?
I am on the 3 mg dose once per month, but I know that there is also a 7 mg monthly dose.
Also, what are your goal estrogen (estradiol/E2) levels, and how often do you get those checked?
I currently am trying to decide between Lupron + tamoxifen, or Lupron + an aromatase inhibitor!
Thanks.
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I think the higher monthly dose lupron is for advanced prostate cancer.
The lower dose if for breast cancer.
Estrogen is difficult to interpret on tamoxifen and can read falsely high. Generally you want your estrogen to read low (depending on the assay reference range).
We don't monitor estrogen levels on these therapies in the UK!
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Smo239..so what did your mo recommend for follow up treatment ?
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How commonly prescribed is ovarian suppression plus an aromatase inhibitor? I am thinking about starting on that but am concerned that it hasn't been as well studied and commonly used in premenopausal women.
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Eloqui -this regimen is increasingly used and may be better than OS plus tamoxifen but the data are not clear. With OS plus AI bone heal needs to be monitored because if the increased risk of osteoporosis
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Hi Annice and everyone!
I'm on tamoxifen and zoladex (os) and I'm coming up to my two years since dx. We're wanting to have a baby, how long should I stay on the tamoxifen and zoladex for first, two years from diagnosis or from starting the meds?! Also, any advice on time to conceive, how long to wait etc would be much appreciated.
Thanks xxx
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Kiwikid how are you feeling on Zoladex in your age group? I am 37 and wondering why I was not offered it?
My MO said only that Tamoxifen is an option for me but benefits and risks in may case in his opinion kind of equals so it is up to me to decide... I did not decide to take Tamo although of course I am scared about future and if that was right decision, but I am scared about Tamo SE and overtreatment, I wondered if OS alone would benefit me or is it always in combination with hormone therapy.. and why no one offered OS to me, I though maybe because of the age but here you are Kiwikid younger then me and yet on OS , Oh.. I am confused again.. and my MO said no follow ups with him as it is not needed! so whom to ask?
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I had both as my. MO said the research wasn't clear in my age group. A friend with very similar stats only had zoladex, whereas many only get tamoxifen. Sorry I can't be of more help, maybe seek a second opinion? What country are you in? This also plays a part.
Best
Kk
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Kiwikid - thanks a lot, I live in Canada, I had only one meeting with MO so many questions I later came up with have not had chance to ask
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Hi all,
Well I have had a little hiccup as have had some bleeding for first time after 3 1/2 years and scan is not perfect so heading for gynae opinion and may need full hysterectomy because of the tamoxifen. I am a wimp and don't want any more surgery but what will be will be!
Thanks so much to VR for posting the SOFT trial result. There is a non significant benefit of ovarian suppression added to tamoxifen. So it's as expected that the benefit is likely to be small/modest and the greatestbenefits seem to be in the women at highest risk of recurrence form the get go.
Will be interested to hear others thoughts on the results...
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Annice So sorry to hear of your hiccup, hope for the best for you.
Interesting results from the SOFT trial - VR, thank you for posting. I completed two years of Zoladex treatment in September, in addition to taking Tamoxifen. I've discussed with MO the option of continuing OS beyond two years, and this result (happily!) pushes me toward not starting the monthly injections again. Given what I knew two years ago, I would do the Zoladex treatment again though. I do wonder what the threshold of a higher risk means - Grade 3 or a higher Stage?
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Annicemd - there is an entire thread on the SABC conference - the gist of it is that yes, the women who benefitted the most are those who required chemotherapy (or the higher risk women) in the first place were the ones to benefit the most from OS+AI. Those of you who have been given a pass on chemo (and therefore low risk) derive very little benefit from OS+AI or OS+Tamox - Tamox alone seems to be sufficient.
all I can say is...Im jealous ! looks like these shots are going to continue for me....
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Hi Annice ....sorry to hear that you are having these additional problems. Please keep us posted.
What about those that were on the fence about whether or not to do chemo .....and made their decision based on the onco type test .....
I guess that would mean you are low risk if you were given the choice ......and tamox would be sufficient ??
For those of us ( age 45 +) that chose not to do chemo ( and borderline oncotype test ) ..adding the zoladex could be an additional insurance policy
I suppose .
In my case ... I have been on Zoladex for 18 months and based on these new results from the SOFT Trial, I think I will forgo the last 6 months
of my 2 year treatment plan ......I am 48 now and likely wont get my period back after these 18 months......I will see what my MO has to say .
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pooh....I would be interested in hearing what your doctor opines. One has to look very carefully at the study and figure out what it doesn't tell us!
When previously asked about what the results of the SOFT might be, my MO had always said that it would take a very long time to notice whether or not O/S is effective against recurrence, because most early stage ER+ patients have a good prognosis. He also said, that for most of them, recurrence is more likely later. The study did confirm his expectation. The jury is still out for many of us. Time will tell.
So Pooh, lease let us know what s/he recommends. And by all means....anyone here who speaks to their clinician, let us know what they think! Thanks!
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Does anyone know if Oncotype DX scores (or something similar) was used to determine who was considered 'higher risk' to warrant chemotherapy in these patients? My dilemma is that, based on the characteristics of my tumor alone (grade, Oncotype score, size, etc), I would be considered lower risk - and wouldn't benefit much from the addition of ovarian suppression according to these results (and chemo was not recommended for me either). However, I was only 37 at diagnosis and there seems to be a clear differentiation based on age - younger women had more of a benefit. But, then again, most of these younger women had chemo, meaning their tumors were likely more aggressive. So, I'm a little confused about what to make of this..
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And thinking of you, Annice. Hoping the hiccup is a small one and behind you quickly
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huuummmmm Good question Nan54 .........!!!!!0 -
Until they really find a cure none of us can be assured the treatment suggested will help all we can do is look at the stats. We live in the dark ages of cancer treatment. I hope one day very soon we can train our immune systems to attack these rogue cells. We need to demand the research for the cure not poison to extend life especially painful existence
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Meow, love your post!
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I agree 100%. However, behind us there are far darker days, so at least we are not there.
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I'm wondering what the time frame of the SOFT trial was? With low stage Grade 1, I'm fortunate to not worry about the shorter term. But like VR pointed out, it's 15 - 20+ years down the road that we need to be concerned about.
Meow Interesting post, I do think that the future looks brighter for cancer treatment and perhaps some day a cure. I moved back to Florida, and now live in the area where Scripps Research Institute has their Florida facility. I'm lucky to have the opportunity next week to tour Scripps, and meet some of the scientists in the cancer department. My big question is what the future of immunotherapy is, whether it can replace chemo. Or perhaps a method can be used to detect who is susceptible to getting cancer in the first place, and prevent cancer cells from taking hold in that individual.
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Nan54, I have the same doubt... I was 36 when Dx at early stage and had oncotype 11, I didn't have chemo and I am on tamox alone for now...
Please let me know when you talk to your doctors and I'll do the same...
If there are more of us in the same situation, please inform us what was your treatment decision.
May God be always with us!
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Nan,
As far as I understand oncotype is utilised for exactly that -to decide which otherwise early stagers should receive chemo, and that would have been the case in SOFT, the difference being addition of the ovarian suppression arm of treatment.
Outside of clinical trials, age (for those who are very young early stagers) may sway oncologist decisions but may not. Because there are no clear data on this. Yep it's a lottery.
The US is ahead of the UK by a long way. I had to arrange my own oncotype test as it was not available in the UK in 2011. Not sure what I would have done if my numbers came back adverse as my NHS oncologist had no interest in giving me any adjuvant treatment except tamoxifen. I also had to arrange my own zoladex shots. I am a medic so have some clout to influence my medical teams to try and get more modern and state of the art treatment which is not a given in the NHS system. I spent about £8000 on additional treatment that were not available to me through the NHS! It's scary that we are at the mercy of our medical teams (and healthcare systems) and there is such a variation in standards..
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annicemd Interesting that OS was not offered to you in the UK. I supplemented my care starting in 2012 through the public system in Budapest as I was living there at the time. The MO in Budapest pretty much insisted that I start OS, and complete a two year treatment with it. I don't think of the Hungarian system as having modern medical care, maybe the Hungarian MO is an outlier.
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Just got an email back from my MO .....regarding my request to stop the Zoladex shots following the results of the SOFT trial .
MO agreed with me . So no more shots for me !!!!!
I am 48 and have completed 18 months of Zoladex.
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This is the reply I got from "Ask an expert" at the John Hopkins Breast Centre .Forum Questions Ask a Question Hormonal Therapy
Questions about Hormonal Therapy.3,063 Asked Publicly Submitted Question 12/15/2014 Based on the recent results of the SOFT Trial....would you say that it would be safe for me to stop my Zoladex shots. Ive been on them for 18 months now ( already too long for me ) ....
The SOFT trial confirms that there is no benefit of using the 2 therapies ( Tamoxifen and Zoladex )for women over 46...I am 48 considered low risk , stage 1, no nodes , no lvi , grade 2, her2- ......
I will be discussing with my oncologist but wanted your opinion as well .Replied JHU's Breast Center Reply 12/15/2014 Really important to have that thoughtful discussion with your oncologist. likely such a decision will be made but don't alter your treatment in any way until you see him/her. 0 -
I was diagnosed two years ago with BC Grade 1, 7mm, Tubular, unifocal, no vascular invasion... just one month before turning 35. I did lumpectomy then 4 weeks of rad. Both my surgeon and oncologist offered me Tamoxifen as an option. I took it for 10 months then stopped to try for babies. My medical team were OK with my decision as they said I had a very good prognosis and that taking Tamox was improving my 10 years survival chances by less than 2%. I trust my medical team and at the end, nobody really knows for sure what will happen. I sometimes wonder whether I should have gone for a more aggressive treatment but I don't want to exhaust all my options at this stage; better to leave the aggressive treatment for more aggressive cancer - something I hope I will never have to face!0 -
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And to think in the 1980s the "gold standard" for BC treatment was heavy chemo for everyone, get white blood counts as low as possible (hopefully w/out killing the patient) and then do a bone marrow transplant. Lots of women died due to this treatment before they decided it wasn't all that "golden."
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