Stage 1, grade 1 and pre-menopausal
Comments
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min937, voraciousreader, swimgirl, annicemd -- thank you all so much for your input! You're all right--there is no straight easy answer to this! I met with oncologist #2 today and looks like I'm back to the drawing board, all because of my ki-67 score. As background, my pre-surgery biopsy showed my ki-67 as 1-3%. I know the ki-67 factors into the Oncotype score (though it wasn't on my report), and my Oncotype was an 8. However, my surgery pathology report showed my ki-67 as 25% (high). I asked Onco #1 to explain that and she said that the Oncotype trumphs the ki-67 and that the ki-67 is sometimes unreliable. Her recommendation -- only tamoxifen, you can start anytime, and no OS.
Onc #2: initial recommendation is tamoxifen only, but we can discuss OS further and the benefits in your case after we sort out your ki-67 issue. So onc #2 isn't against OS for me, but also doesn't promise it either. The discrepancy between the ki-67 scores concerned her, and she is going to present my case to the board of doctors of various disciplines (I'm not sure if it's the tumor board?) again. Options she said would be possible include: asking the pathologist to do another review of my tumor slides or getting another lab look at the slides and provide a second opinion. She's also going to seek another opinion from a doctor in Johns Hopkins and see what his thoughts are regarding my case. So bottom line -- I got no clear answer from her on whether I would be on tamoxifen only, tamoxifen and OS, and she wouldn't completely rule out chemo either.
I wish there was a black and white decision-making process with breast cancer. Guess not right? Thanks for listening to my frusterated rant...
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Cuetang... Yes! Those physicians in the various disciplines ARE the tumor board. Regarding KI-67...another pathology review is in order. There is controversy regarding KI-67 scores. In fact, some pathologists don't even test for it. However, when there is any discrepancy in the tumor's characteristics, and the KI-67 score is concerning, then additional pathology screening is NECESSARY. Sounds like your team of physicians are leaving no stone unturned! I wish you well! Hang in there!
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I am 42. Grade 1. Stage 1. Double Mastectomy. Tamoxifan. Sometimes I wonder if I really needed to do the double mastectomy. ugh. Especially with it being so early. And I am ignorant about the odds of it coming back and have a lot of fear. I have done some dietary things but the stress is making me make poor life decisions.
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My MO never mentioned ovarian suppression. My pathology showed 99% ER/PR positive but the Oncotype was a little lower. Oncotype score was 19. I still don't understand why it was that high. However, MO feels with the very high estrogen receptor results that Tamoxifen is better for me than chemo would have been.
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Twirley...try not to second guess your decisions. I think NOT second guessing our decisions is the single most hardest thing to do on this journey. Moving on and beginning to enjoy our journey is the second hardest thing to do. I wish you strength as you move along! I also wish you well!
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Hi! Coming back here for some thoughts... So the pathologist re-reviewed my slides and indicates that it is a low grade tumor, despite the earlier reports of the high ki-67 score (but did not explain to my oncologist why the surgery path report put it at 25% high) and is confident in the Oncotype score I got back. The tumor board that is reviewing my case doesn't meet until later this week, but based off if the second review of my slides, my oncologist is leaning towards hormonal therapy only. My oncologist has left it up to me on whether or not I want a guy from Johns Hopkins to review my pathology for that "second opinion", but that would also involve me going up there to see him as well to discuss my case. My tumor was 1.8 cm, grade 1 for the IDC and grade 2 for the DCIS and the Oncotype was an 8. I'm not sure if I should have another review my pathology again or go with the current recommendations based off of her second review of my tumor slides?
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Hi ladies! Thank you so much for listening to my concerns from the last few weeks. It is truly comforting to bounce off ideas to those who truly understand what I'm going through. So I finally got a call from my oncologist. The verdict is no chemo from the tumor board. Apparently they looked at my slides during the conference and all agreed it was a low grade tumor and put their confidence behind what they saw as well as the Oncotype score, despite having a high ki-67. On a side note, I also had clear margins from my mastectomy, but the tumor was less than 1mm from my skin. The final verdict is no chemo, and no rads! I feel like I narrowly missed two of the major treatments to deal with BC. Am I fully comfortable with this? Not really. However, I also know that these doctors all thought that the risks of each were more than the benefits that they would provide. Bottom line is BC stinks! I agree with another poster that this is like getting a deck of cards and having to play a game that you don't know the rules to.
The tumor board supported the idea of ovarian suppression for me, but I don't know yet if it's Lupron or Zoladex. What is the difference between Zoladex vs. Lupron vs. another OS? Is there any one that is better than the other? Should I be asking for bone supplementing drugs such as Zometa? As usual, I'm trying to prep questions before I see the MO...
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Cuetang - I'm glad you had the tumor board review your slides, and are that much further along in your treatment decision(s). Your stats are very similar to mine (except I had multi-focal DCIS). I also had a high ki-67 score, and as others have mentioned, there is some controversy about it. My MO told me that it is a factor they look at, but he wouldn't make a decision based on that test result. So, like you, with other factors in favor of ovarian suppression over chemo, the ki-67 result became less relevant for me.
I can't answer the questions about Lupron, because it was never a drug that was discussed with me. As far as the Zometa goes, I am on it along with the Zoladex because of the study that my MO based her treatment recommendation on (an Austrian study, I forget the name). For the time being, with the SOFT trial under way, my treatment plan is based on the timeline of that study (3 years of Zoladex and Zometa). Tamoxifen is actually supposed to help bone density, so I don't know if the Zometa was absolutely necessary, but the study included it, so to get the additional lower risk of recurrence that my MO thought I could get, I went with her recommendation. We also agreed that if I didn't tolerate the zoladex/zometa well, that I could always stop them. I know everyone is different, but I've had 4 zoladex shots and 1 zometa infusion so far with very minor side effects. In fact, I didn't even notice any side effects after the zometa infusion. Of course, the long term effects of all of these drugs are always in the back of my mind. I'm anxious for the SOFT results to come out to further tailor my treatment, if necessary.
Please keep us posted after you meet with your MO!
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Thank you min937 for sharing your thoughts and experience!
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Cuetang, zoladex and Lupron are both GnRH analogues made by different companies I.e. more or less the same thing. There are various OS studies using both these drugs so there is some evidence for both, mainly in treatment of pre menopausal women with metastatic breast cancer. They both suppress estrogen by inducing a chemical menopause.
I totally understand you feeling a bit uncertain about the treatment decision.. It's a tough set of cards to be delt but it is important not to over treat early stage BC and that can be really hard to get your head around . I felt similar for ages but now I am much more accepting of my treatment approach. OS has been a good compromise for those of us still wanting to be aggressive with tx but it's an individual decision as the docs will prob not automatically recommend it, although they are generally happy to prescribe it in this context,
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Annicemd-- thanks for letting me know the details about Lupron and Zoladex. Good thing to know that I don't have to try to lobby for one over another!
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Hi everybody
I am new to this site and have never posted.
I am glad i found this thread and wanted to join in ( even though iam grade 2 ).
I am presently on my 10th radiation treatment after having a lumpectomy .
I was offered either chemo +tamoxifen OR Zoladex + Tamoxifen and given the same reoccurence rates for both .( based on the zebra trial).
I chose the lesser of 2 evils and will be startng the Zoladex/Tamox combo after rads .
The onco type test is not covered or recommended in eastern canada but i am thinking of getting it ( at my cost of aprox 5,000$ ) .
I have started rads though and i think i would not be able to do chemo even if my score came back high ....so i hesitate to order it out of fear it would be a high score .
For some reason i am thinking that you cant do chemo once youve done rads ??????( any comments would be appreciated ) ...I recall my Onco saying something to that effect ???
Either way my Onco says that both treatment options would give me similar results especiallly since i am 100% estrogen positive .....
If i ordered the onco test and it was LOW i was thinking:
1. it would give me piece of mind and
2. that i could maybe postpone the Zoladex for a few months until the fall of 2013 when the soft trial results would be available .......or i just may give her my ALL and puts all odds on my side until the results are ready ....can always stop the zoladex in 6 month right ???( I am just scared of shutting my ovaries down and the side effects that come with it)
P>S thank-you to everyone on this site.....your comments are all so very helpful
Heather
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Heather...Despite being Grade 2, you are most welcome to join us since you face the same dilemma that we faced when we had to choose our active treatment. I am sorry that you are not being offered the OncotypeDX test. As you are probably aware, some of the other Canadian provinces are offering it. Is there some way to appeal your province's decision? Certainly having the additional information gleened from the OncotypeDX test would be helpful. If you do decide to pay out of pocket for the test, I know the folks who perform the test can work out a payment schedule. Why not give them a call? Nonetheless, the information that you presently have suggests that either protocol is appropriate. Keep in mind though, that the SOFT trial's results will be PRELIMINARY....that is, the half way point in the study. While no formal announcement has been made as to when the results will be released, it appears that we MIGHT get the information at the next San Antonio Breast Cancer Symposium in December.
I wish you well during this difficult period when you have to make an "active treatment" decision. We are very fortunate to have so many choices. The devil is in living with whatever decision we make and then moving forward. I promise that once you do make a decision and then move beyond active treatment, it does get easier. Also remember, if you DO decide on ovarian suppression, nothing is written in stone. Based on how you are feeling, you can always revisit your decision.
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Heather, in my opinion the more information you have on the cancer the better. You can have chemo after rads, that's just not the preferred order of treatment. You can stop zoladex anytime and you will probably become pre-menopausal again as you are only 46. The zoladex effects/ side effects are reversible.
I reiterate VRs wise words that once you are beyond the active treatment phase things do get easier and you can learn to live side by side with with your new diagnosis rather than it controlling nearly all your thoughts
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Thanks so much Voraciousre and Annice.......
Your opinions are much appreciated and so helpful. I may just go ahead with ordering the Onco type test....i guess
it is better to know thy enemy !!!!
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Those on Zoladex .....I am assuming you are all stopping after 3 years ?
And if your periods come back ...i am assuming that its ok and will not affect reoccurence rates ?
Found this article on Dr Susan Love's web site
http://www.dslrf.org/breastcancer/content.asp?L2=4&L3=5&SID=130&CID=421&PID=27
says this :
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 -
Pooh....The ZEBRA trail was a "snapshot" and starting point. The SOFT and TEXT trials grew out of the ZEBRA trial. The PERCHE trial which was also initiated following the ZEBRA trial was discontinued because not enough patients enrolled. As of today, there is NO answer to the question of whether or not ovarian suppression PLUS either Tamoxifen or an AI is superior to chemotherapy. And if it is the same or superior, there is NO answer yet to how long a patient should do ovarian suppression. Keep in mind that when ZEBRA was initiated, early stage premenopausal women were NOT receiving Tamoxifen.
The SOFT and TEXT trials were specifically designed to investigate 5 years of ovarian suppression and the preliminary results are anxiously awaited by clinicans and patients.
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Thanks Voracious ...very helpful .....so we all sit and wait for the long awaited results of the SOFT and TEXT trail.
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Yep!
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More questions for anyone on the Zoladex /Tamox combo.
Curious if anyone's hair thinned out on the Zoladex /Tamox combo.
I start these meds in about 4 weeks ( after rads ) i am supoosed to start both at the same time which i find odd
as it will be hard to know where the side effects come from.
Just trying to prepare myself mentally.
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I started tamoxifen before zol so I know what caused what for me.
I take a comprehensive multivitamin with minerals. Some mineral deficiencies can worsen hair loss and mineral deficiencies are relatively common. Even though I feel I have a healthy diet I think the supplements help. I also take vitamin D. I think if your well being is optimised you are less likely to experience problems with treatments. Being physically strong also helps so regular exercise is important0 -
My onc started me on Zoladex and I will start Tamoxifen 4 weeks after (so, next Friday). She also is putting me on Zometa (every three months?) to address bone density loss from this tx plan. Have only been on Zoladex for 3 weeks, and my SE have been hot flashes; primarily at night. I seem to be getting more as time progresses. As a result, not getting real deep sleep, which is taking a bit of a toll. So, side effects yes, but not anything that'd make me want to quit. Also am taking a multivitamin --was advised to take calcium and Vit. D. And drinking lots of water.
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Renee, I get hot flashes with the zol too. Whenever I get one I think yay this means my estrogen level is low and it's working
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pooh612 I take multi-vit, D3 and fish oil supplements and get lots of exercise, this helps a lot I think with joint achiness. My hair did thin a bit but it's not noticeable. I think it's a benefit, as I had so much before and now it's easier to manage. Insomnia has been a little bit of a problem - but I had insomnia before dx too. I've tried magnesium for sleepness nights and it seems to help.
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Heather as AnniceMD said you can have chemo after rads. I sought out a 2nd opinion after rads because I was not happy with my first MO. My oncotype score was in a very gray area. My new MO offered me chemo and tamox or Zometa and Tamox. I choose the Zometa and Tamox. The Tamox made my hair thin really badly and I already had really thin hair. I did start taking biotin and it took about 4 months to notice a difference but it has really helped.
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Saw my onc today--was (am) experiencing swelling in my face (minor, but noticable) plus rashy-type reaction on my neck and chest, and the skin on my face is...not normal. Not flaking , or exactly dry, but doesn't feel normal. Anyway, she said it was the hormonal changes in my body (vs. an allergic reaction to the drug). Not doing anything about it, which is fine with me (she just wanted to make sure it wasn't severe enough to warrant steroids). She said it will take at least three months for my body to get use to the new hormone situation.
It gave me a chance to clarify what my tx plan is. She said I'd be on Zoladex for three years. Bottom line, she doesn't want me to have a period ever again, and is hoping after three years that my body is ready for menopause, or that this treatment pushes me into menopause. I asked why she doesn't remove my ovaries. She laughed and said women tend to not like her after that (what it does to your body when you remove the ovaries), so she does chemical supression and takes things from there. She said once the body is adjusted from the chemical suppression, ovary removal doesn't have the same severe reaction (and chemical suppression offers more of a transitional experience than ovary removal does to your body). Of course, she brought up other factors--ovary removal is permanent, etc. Usually she waits a couple of years to bring up ovary removal.
I told her she didn't need to talk me into removing my ovaries, so we'll revisit this again in a few months. I mean, is it worth the time and expense of these monthly shots if in the end I"m going to get them removed anyway? I guess I should ride this experience out a bit before making a decision about going for a flat out removal. I'm such a practical person...won't this save money and time? Can't they just add this in when I have to go in for implant surgery?
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Hi Sherry
Thank you for the info ....I thought Zometa was for bone density issues so i am not sure why it can be used as an alternative to chemo?..Thanks for the tip about biotin and the hair thinning
I am meeting with my Oncologist on wednesday to order the oncotype test .
i have 3 more weeks of rads so i hope to have a better picture of what iam am dealing with.
If the score is high i am prepraed to do chemo ...if not i will stick to the zoladex /tamox plan ....still scared of Zoladex though.....and may only do Tamox if the score is really low.
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p.s sherry
How much biotin do you take ?
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Pooh...more than a decade ago, researchers and clinicians noticed that patients who took bone density drugs AND were breast cancer survivors seemed to have a lower incidence of breast cancer recurrence. Several studies commenced to see if bone density drugs reduced recurrences. The idea is that in a low estrogen environment, whether through ovarian suppression or post menopause, the bone density drugs prevent the rogue cancer cells from metastasizing in the bone marrow. So far, for women over 40 who are doing ovarian suppression AND women 5 years post menopausal who have 6 Zometa infusions over three years are, in fact, benefiting. Again, just like the SOFT and TEXT trials, the studies are still underway, so there is no answer yet if they should be included in the NCCN guidelines.
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pooh612 - I have not noticed hair thinning on the Zoladex/tamoxifen combo, but I did start taking 2500mcg of biotin daily, along with my multivitamin, when I started the meds. Hot flashes at night is my main side effect, and they seem to be getting a little less frequent. (I'm in my fourth month of treatment.). I also have days where I have noticeable anxiety, but I can often control that with cleaning up my diet. I also exercise at least 5 days a week, which I think has helped a lot. Like everyone else, I am so anxious for the results of these studies!
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