Stage 1, grade 1 and pre-menopausal
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Sounds as if many of us will be through most or all of our prescribed treatments by then.0 -
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I think it would be much kinder and more accurate to indicate clearly in the OP and in following discussions whenever talking so enthusiastically about hoping to get the results for "early stage breast cancer trials" such as SOFT, TEXT, TAILOR-X, not to raise the hopes of the 20% to 30% of early stage breast cancer patients who are HER2 positive, since those patients have been excluded from all of these trials and any results.HER2 positive patients have been left out in regard to the questions involved in these trials for a decade now for unclear reasons, and while these trials are continuing to be pursued for other early stage bc patients, in 5 more years HER2 patients who would like to have similar trials and information for their benefit, instead will be 15 years behind their counterparts.
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AlaskaAngel - this thread is titled stage 1 and grade 1. While it might exist, I've never heard of a HER2+ tumor to be grade 1.0 -
Thanks so much to VR for keeping us up to date with the latest info on this exciting research.
My interpretation of the preliminary info is that there are fewer recurrences than predicted in all groups and this is a big study - the study investigators would have done a power calculation at the outset of the study predicting how many recurrences would be expected based on historic recurrence rates at that time. Tentatively I think that the fact that there are fewer recurrences at this stage is good news. It illustrates that survival rates are improving and recurrence rates are falling with improved conventional treatments hence having to extend the data collection. So regardless of whether those of us on this thread have gone for aggressive additional hormone treatment or not it is likely that we are all likely to have better survival than the stats (that we are all used to stressing over) predict.
As far as I am concerned it looks like good news for all!
Annice0 -
Lekker, that is a very good point. They do exist, however. Along the same line of thought, there are those who are HR negative among that 20-30% of diagnosed HER2 positives as well. No one, including me, is unhappy that some patients will benefit from these studies.The discussion thus far continues to indicate that those who benefit are very anxiously and excitedly anticipating the results of these trials, and with that much enthusiasm about these trials from those who will benefit, it would be kinder to at least indicate consistently that in fact, these trials will provide no information for those who are HER2 positive. It is easy for those who benefit to excitedly ignore those who won't benefit as if those patients definitely would not have benefitted when that is far from proven fact.
No arm was included in the study for HER2 patients. It reflects the continuing bias against the separation of what is effective about OA regardless of whether it occurs by chemotherapy or by other means. It continues to infer that chemotherapy is "more effective" without ever proving that it actually is.We already know that HR positive patients get FAR LESS benefit from chemotherapy, which is a strong indicator that its main effect is OA. Newly diagnosed patients have difficulty interpreting the reality about its very limited effectiveness because of that. For early stage bc, it is my understanding that approximately only 20% benefit from chemotherapy.
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Annice or VR can you refresh my memory of what the trials are? Are they trials of having a better outcome if your ovaries are surgically removed?
Annice--I had a Dexa Scan two years ago (normal scores) right before I started the Zometa protocol. I just had another Dexa Scan. The scores for my lumbar area improved dramatically. The scores for my left hip and femar slightly decreased even though I have been on the Zometa. My paternal grandmother had sever osteoporosis so I have always been worried about that. I see my MO the end of December for my Zometa treatment and will discuss this with him. Even though my scores are still in the normal range it just really surprised me that my scores had decreased somewhat being that I have been on Zometa. What are your thoughts on that? Oh and my grandmother broke her left hip because of osteoporois.0 -
Sherry... SOFT and TEXT are designed to answer the question if early stage, hormone receptive patients, do well or better than taking Tamoxifen or an AI if they include ovarian suppression rather than just doing the Tamoxifen or AI alone. Ovarian suppression can be surgical or medically induced.0 -
Those of you doing ovarian suppression via zoladex .........where you told 2 years or 3 ?0 -
VR thanks0 -
pooh... There's no fixed amount of time... Perhaps SOFT and TEXT will give us some info. Personally, I was 53 at diagnosis and my mom and sister entered natural menopause at 55, so MO and I chose 2 years. Afterwards, I was checked over the course of the year and officially entered menopause.0 -
Pooh, my Inc said it was her goal that I never have another period. She said 3 years, unless we decide to remove ovaries before then.
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pooh - my current treatment plan includes three years of Zoladex, but like Renee, I suspect my MO will not want me to resume my periods either. I had just turned 40, and I don't think she wanted to freak me out, so she focused on the immediate course of action
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sherry, there are several factors that impact on bone density. The fact that your lumbar spine has improved is probably the result of the zometa. A slight reduction in your femoral measurement (still within the normal range) is difficult to interpret as bone mineral density naturally falls with age. Genetic factors are influential and for the femur weight bearing exercise has a very beneficial impact (walking, running, dancing etc). Smoking and alcohol negatively effect bone density. Obviously calcium and vitamin D status are also very important. I would not be too concerned about the slight negative change. Whilst zometa will protect the fall in BMD with age and menopause, it may not completely override the other contributory factors so ideally try to address any of the above that might be relevant... Obviously you can't do much about your genes0 -
Re time for ovarian suppression there are no answers.... only questions ...and we will have to wait for SOFT results. Until then it's a decision that needs to be based on discussion with your MO/onc and individualised to your specific risk and stats, there is no right and wrong at present
Annice0 -
Annice thanks I assumed the dramatic increase in my lumbar was the Zometa. I do weight bearing exercise, walking and Yoga and on high doses of vitamin D per MO. You are so right can't do anything about my genes but trying to do the other things right. Never occured to me when I was young that taking care of myself as I got older would be do dang hard and time consuming. LOL0 -
Thanks Annice and everyone ...regarding my question about what you were told as to the number of years on zoladex ...i was confused because i was told 2 years and a friend of mine was told 3..........I guess it will depend as to whether or not you are in menopause after the treatment and as you mentioned Annice will depends on everyone's individual risk and stats.
I was also confused because some women in the zebra trial (comparing zoladex to CMF chemo) got their periods back after the 3 years
of zoladex and there was no difference between survival between the 2 groups .....Susan Love's article says
http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=3&L3=5&L4=0&PID=&sid=130&cid=421
Zoladex does not always cause permanent amenorrhea. In the ZEBRA trial, 68 of the 511 women on Zoladex had their periods return after they stopped treatment. However the researchers found that there was no difference in survival between the group of women who got their periods back and those who did not. (This was reported at the 2002 San Antonio Breast Cancer Conference.)
This is important because researchers were concerned that Zoladex was only effective as long as a woman was on it. Instead, it now appears that Zoladex seems to work more like tamoxifen, which puts cancer cells to sleep (or maybe even kills them) and then keeps them asleep even after treatment ends. This finding may lead women to evaluate their options in different ways. For if three years of temporary menopause induced by Zoladex can have the same effect as long-term menopause induced by chemotherapy, Zoladex may be a better quality-of-life choice for some women.0 -
hi all
I stopped the zoladex/Lupron about 2 months ago and had one day of bleeding and that's it..no sign of flo. Does that mean im still in meno or are these damn ovaries trying hard to come back to life. How long does this stuff stay in our system? I thought it wasn't good to be on these shots for years - I thought months but I guess maybe that's for ppl using them for fertility treatments
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pooh, I agree with you the data support zoladex but international consensus on this will require the SOFT trial results, until then there will be variable practice in this area0 -
Rosen, it's still early days, your cycles may return. You could ask your MO to do blood works including LH and FSH which will give you an idea of whether your ovaries are waking up or not0 -
Annice .....what form of birth controI would you recommend for our daughters....I have started to research this
as i know that the time will come when my daughter will be in a relationship and i do not want to increase her risks of
getting bc.
Sorry if i am slightly off topic ...but you are so helpful.... i thought id ask?
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hi sorry for delay in reply, it is a good question re birth control for our daughters! My daughter is 9 and so it is something that I think about for her future. I don't think there is a right or wrong answer to this. I personally will encourage my daughter to use non hormone methods-coil/ condoms and only use birth control pills for very short periods with long breaks in between if at all possible. Of course the risks of the pills needs to be balanced with risks of unplanned pregnancy and this is a difficult and emotive issue. Of course birth control technology may improve in the next few years (here's hoping) and decisions might become easier for our daughters0 -
Annice...One more thing to worry about...My daughter began taking birth control pills when she was 18 to regulate her periods. She began menstuating at 16 but was never regular...so by 18, the gyno put her on birth control pills. She was tested up the wazoo over the years and they never found any problems. She's always been very slender due to gastro issues. Initially they believed her problem was due to lack of body fat. The gyno said she needed to protect her ovaries. Gyno doesn't seem too concerned... She is on a very low dose pill.Meanwhile...I keep pleading with her to start a family already!!! She's 29! Oy!!!0 -
Thanks Annice .....I just came back from the Dr Office with my daughter and well.....she gave her a prescription for Diane 35 a low dose
birth control pill . My daughter is 16 and NOT sexually active but the idea behind this prescription was to control her acne which is very bad .
So I will need to researching this Diane 35 pill a little more .........not keen about her using hormones at such a young age especially with the additional risk due to BC in the family . She is on minocycline antibiotics now for her acne and i have fears about her being on this for a long period of time as well and maybe developing a resistance to antibiotics. So ...need to think about this a lot more........uhhhhh
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Pooh, will she stay on the minocycline along with the birth control pill? My daughter, also 16, takes that for acne also and it works very well for her, although her scarring from before she took it, on her back and chest and shoulders, isn't going away.0 -
Hi Runfree...the Dr recommended starting her on the Diane 35......while slowly reducing the antibiotics over a period of a 4 to 6 weeks .
Is your daughter on Diane 35 or Minocycline ????
If she is on the Diane 35 ...are you concerned about the hormones and possible added risk of BC ?
If she is on Minocycline are you concerned about long term use of antibiotics ?
You can pm if you prefer ...since we are off topic for this thread ?0 -
I am so happy to have found this thread - thanks to all of you who have kept it going for so long, and especially to Annicemd, VR and AA for all of your input. I am not quite a perfect fit here, but am dealing with many of your same issues. I am Stage 1, grade 2, premenopausal (age 43 - Mom didn't hit menopause til 58). Although ER+/PR+/HER2-, my high Ki67 made us decide to to chemo. It took two rounds before "chemopause" started, and now only 3 months after finishing chemo my periods have returned. I just finished radiation Dec 30 and am supposed to start Tamoxifen next week. MO wants me to stay 3 months on Tamoxifen to see what happens with menses before deciding whether to add Lupron. I have a friend who is SO miserable on Lupron that it scares me! Glad to see many of you do better on it. I don't love the idea of waiting 3 months…obviously my body likes to produce estrogen, so I'm scared Tamoxifen will have to work too hard. The fear of metastasization keeps me up at night. I have also been investigating the possibility of an ooph, but not sure if the short term benefits outweigh the long term risks. At this point I am leaning toward it. I know SOFT trial will answer some of these questions but not all, plus hate not knowing what to do in the interim.
Was also reading some of what you wrote re: HER2. Interesting. Mine was 2+ (equivocal) but FISH test confirmed negative. Hope that was right!
MO did not even mention Zoladex - is there a reason some of you are on that instead of Lupron?
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Hi vcats70,Isn't it a great feeling to tune in to some discussions that are really meaningful? My guess is that most of those here would be in their 40's and within 5 years of being diagnosed (and I'm now 63 and over 10 years out from dx and grade 3, so some of what I've experienced is different). Both Annicemd and VR are very knowledgeable and helpful here, as they fit the description of the majority. I'm glad you are getting a lot out of the conversations here!
A.A.
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ycats,
Zoladex and lupron are more or less the same drug produced by different pharmas. The ovarian suppression choice is still considered by most oncs as aggressive in our situation and although there is supporting evidence to suggest it's better, there is not overwhelming evidence showing long term positive risk benefit ratio yet. So at present it remain a choice for early stage pre-meno BC. I chose it for the same reasons you have illustrated. If periods stop on tamoxifen it does not necessarily mean the same as meno so I think your MO is simply trying to put you off the OS. It's all about balancing the reduction in theoretical recurrence with all the problems associated with an early menopause in the long term. Until the guidelines change it remains for you to discuss and negotiate with your MO and onc!
Hope that helps.
Happy new year everyone!
Annicemd
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