Stage 1, grade 1 and pre-menopausal
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GG you have very similar stats to me as I had 2 tumours 1 and .8 cm and I was HER- (1+) if you would like to consider having another baby you need to have a detailed discussion with your team about the best treatment plan for you. Usually OS is favoured over tamox in this situation if you possibly want a pregnancy soon, you would need a wash-out period after tamoxifen before trying for a pregnancy. At your age your ovaries will recover after OS unless you were heading for prem menopause before treatment (unlikely). There are some threads on this website on this topic, you are not alone re wanting another baby.
I have my 3 year MRI scan on Wednesday. At this time I always think of the sisters who walked before me and had no knowledge, no internet, no support network, who felt alone and who did not survive because treatments were not available. It was not that long ago that tamoxifen was discovered let alone all the other developments we have benefitted from since then. I feel very privileged but still feel vulnerable, hoping the scan will be clear ...
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Annicemd -
Wanted to say good luck with your MRI on Weds. :-)
Also - thanks for this thread. I am quietly but intently making my way through it. 39 at Dx in April, BMX and still trying to decide chemo or no (oncotype 14 - so technically low but still w potential 2% benefit...).
My overall take is that we are 3-5 years off being in a much clearer place in terms of evidence based recommendations for those of us in this position (basically good prognostics, but looking for 50 years not 10!)
Anyhow, very helpful to see others' paths here, and comforting to know I am not alone.
Again, Annicemd, best wishes for Weds.
Rain
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Annice and Sunshine -- thank you both. Annice, good luck on your scan! I will search on the OS and baby stuff and talk to my MO about it in Sept. Day 4 on the Tamox and am feeling a little tired but still fairly normal. Fingers are crossed that mild hot flashes will be my only side effect.
Be well,
GG
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Annicemd, any news? Thinking of you.
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Tarheelmichelle,
Thank you so much for thoughts,
My scan was fine this time😄😄
Happy dance 😘
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Annicemd 💜💜💜💜💃💃💃💃💃💃💃👏👏👏👏👏👏👏 so glad to hear your scan results were good. Yay!!
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Off to turkey on hold tomorrow to celebrate 😘
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Hello ladies, new to this thread, one of the other sisters told me about this thread..its exactly what I was looking for so thank you Juliecc !!
I am in a similar place ...I asked the following question on another thread but this seems to be the appropriate thread to ask.
My BS called Thursday with some of the path results..got great news so far..cancer was smaller than oringinally thought and no rads needed !! She wasnt sure about chemo tho. My question is...No chemo/rads..then what ?? I cant take tamox and I am premeno still...where does that leave me if I don't need chemo/rads ?? Last year I was dx with LCIS, they did a lumpectomy and that was it..no further treatment and look where I am now..this scares me !
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Ganzgirl welcome but sorry you find yourself with us.
You had radical surgery so as long as your margins were clear you shouldn't need rads. However with a 5cm primary you would normally be bumped to stage 2 and therefore usually receive chemo/ ovarian suppression, and why can't you take tamox? I don't know if you have had oncotype testing done? Depending on your age I would have thought you would be offered slightly more aggressive treatment. I think If I were you I would want a second opinion, especially as you say you had LCIS last year and they then find 5cm tumour 18 months later. Sorry wish I had more answers for you...
Annice
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Annicemd....I am 41 years old. I just got off the phone with the bs..she said the tumor was smaller than originally thought..1.8mm. She says definetly no radiation and doubts that onc will recommend chemo. When I was going in for surg she said they would be doing onco test but just now told me they didn't do it !! I am so uneasy about this I want to cry. I cant go on tamox because of the blood clot risk and I am a smoker (trying to quit). Thursday, when my my bs's colleague called with results I was told they also found alh in the opposite breast. So I just tried to confirm that with the dr this morning I said " so you also found precancer in the right side ?" She said "NO it was lcis" isn't that precancer ???? I was dx'd with LCIS last year and was told that was precancer !? I am so confused and on edge about this I don't know what to do. I feel like they are just sending me on my way with no further treatment like they did last year, and look where I am now...
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Ganzgirl, ask them again to send out a sample for the Oncotype Dx. Before my surgery, my surgeon said they would but then it didn't happen. I think it was the BC navigator that ordered 2 weeks after.
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I am so upset right now I...I hate cancer !!!!! This is such a punch in the stomach
Julie..I did ask her to do onco..she said she was going to talk MO about it
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ganzgirl your stats are v good! your prognosis is very good. You are currently in no mans land because you do not yet have a finalised treatment plan. Once you have this you will be able to get normality back gradually. You have v similar stats to many of us on this thread. You have several options.
I would recommend you ask you team to do the oncotype DX test, it's not too late to do it. If you can't have tamoxifen there are other options, discuss with your doctors whether you could have ovarian suppression. Also ask about aromatase inhibitors. There has been some recent data to suggest that aromatase inhibitors may be as effective as tamoxifen in pre-menopausal women. You need to keep proactive and positive. Things are going to get much better....
Annice
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I am 40yrs old premenopausal too, stage 1 grade 2 oncotype 18. 1st Onco doc left it up to me to do chemo and/or hormone therapy, he didn't have or want to offer his opinion (I had to convince him to let me get the oncotype test) and never seemed to be up on my chart (state wrong info about my file/diagnosis numerous times) so I went and had a 2nd opinion yesterday. Talk about night and day. The new onc doc answered all our questions and read my case/file before I came in. He gave us his honest opinion and said to do chemo and hormone therapy based on my cancer, age, and results of the path report. He stated this is what he would tell his family member to do.
Honestly I was iffy and scared about doing hormone therapy because of the side effects but now that I talked with my new onco I feel open in trying it. I know I must sound crazy but chemo doesn't scare me. Especially since he's recommending 4 cycles. The Hormone therapy is for 10 yrs! 10 yrs! (I had a hard time remembering to take my oral birth control pills daily)
I told him I'd make a decision after my exchange this Friday.
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Mulligan .....
Out of curiosity was Ovarian suppression ( zoladex) and Tamox an option ( instead of chemo and tamox) ???
I was given this option and told that the recurrence rates were the same. ( was 46 at diagnosis)
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Annicemd...I know I have great prognosis but it doesn't change how I feel...but, I am going to look into having my ovaries out..if I do that then I will feel so much better about all this
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ganzgirl,It is very frustrating and depressing to have to take responsibility for getting the information you need so that you can make a decision that you are less likely to regret. That is what doctors are supposed to have the training and compassion to provide and explain to you without so much confusion. Some docs can and do provide it, and some don't. You need to know what ALL of your options are for your particular situation, even if it means getting more opinions from several doctors.
It might help to see if your cancer center offers any orientation sessions or breast cancer groups, where you might feel more comfortable asking questions and where you might meet some others with similar questions, or who might recommend someone who provides better service to you.
Don't sell yourself short. Surprisingly, there is comfort with making the effort and getting a better understanding. Don't let someone who isn't explaining things to you cheat you out of that.
A.A.
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Pooh-Bear, the new Onco did say that I can switch from Tamo to an AI (and mentioned suppression shots?) after a few months on Tamo but he suggests I do chemo because of the extensive DCIS and the IDC was multi focal.
10 years of Hormone Therapy scares me.
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Mulligan, I persistently post reference for tamoxifen useres to keep informed about the progress of work being done by the Karolinska Institute. The Institute is trying to both figure out how to most accurately measure breast density AND conducting a study on people using tamoxifen to see whether or not any lessening of breast density might be a reliable indicator for efficacy of tamoxifen and whether lessening of breast density while on tamoxifen is a reliable indicator for shorter period of usage.Just on a personal note, as a pre to peri menopausal patient, right after completion of my treatments of surgery, chemotherapy, and radiation at age 52, my mammograms still showed major breast density. After just 3 months of tamoxifen, my repeat mammo showed no breast density. I raised the question about that with my providers back in 2002 but they just patted me on the head and ignored it. I was on tamoxifen full dose for a year and then half-dose for 3/4 year and then stopped (because I also was HER2 positive, and tamoxifen was noted have worse results for about 1/3 of HER2 positive patients). My tumor was 1.9 cm and I have had no recurrence -- and that also is despite never having had Herceptin either (for HER2 positive cancer), and never having done an AI.
A.A.
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Wow that is interesting AlaskaAngel! Thanks for the info, it's ALWAYS nice to actually hear directly from women what their experiences are/were than from "well studies have shown...". The pat on the head mentality is infuriating. What is nice to hear from my doc is that he also realizes studies don't really take into account pre menopausal women. The majority of the studies are conducted on post menopausal women.
What scares me about Tamo is the stroke issue. My mother had a stroke in her mid 50's and my sister had a stroke she was the same age as me now, 40. (Both were not from any type of SE, I'm the 1st person in my family to have breast cancer) So with the increase of stroke even though they say it's 3% it still a bit scary to me.
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Mulligan, the study is intriguing, especially since it is one where scientists are not developing any additional drug or treatment that could bias an "opinion", but are instead simply using real observations.In addition, it may help to explain in some way why using an AI may be more effective than using tamoxifen even for premeno patients. Why keep a patient whose density has shown no decrease in density while on tamoxifen, on tamoxifen, instead of using an AI possibly? Patients may not be doing themselves a favor by staying on the tamoxifen.
A.A.
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Ganzgirl, AlaskaAngel is right, don't sell yourself short! My 1st Oncologist never really explained anything to me, he literally gave me copies of my report and told me the Tumor Board decided they would leave it up to me to decide whether to do Chemo and/or Hormone Therapy. When I asked for the Oncotype test (he asked me if I knew what it was and I said it's to determine if chemo and/or hormone therapy is beneficial to my treatment and he corrected me and said no it's only to determine if chemo will help in your treatment) so I can make an informed decision he kept trying to deter me saying it wouldn't make much of a difference and thought my cancer was too small to test (at one point they said well you didn't even have cancer, which I had to correct them) after a couple more incorrect flubs (telling me when I'm going to start radiation therapy, I just had a bilateral mastectomy, to telling me I had done all I could do with my treatment and the next step is a mastectomy, (I just had one)) I felt not only were they not even looking at my chart/history, he kept brushing aside any concerns I had so I got a 2nd opinion and went to a totally different Cancer treatment center just to be sure they would get a new prospective and not just automatically agree with the original doc because he's in the same affiliated center. I am so glad I got a 2nd opinion, in fact, I'm almost kicking myself that I didn't go sooner. This new doc not only explained everything to me, he took the time and was very thorough on my whole path reports as well as giving me his honest opinion on my course of treatment and telling me this is what he'd tell his family members to do (without me even asking). Get a 2nd opinion, maybe even a 3rd, but overall find a Doc not only you are comfortable with but confident in their knowledge and abilities.
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Annicemd - I thought you could only be on a AI if you were post menopausal (either naturally or though Ova suppression/surgery)
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sorry rosem, meant AIs with ovarian suppression!
http://www.nejm.org/doi/full/10.1056/NEJMoa1404037...
Annice
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mulligan..Ive only met with my MO once...just for consult so far. I have an appointment with him on the 8th. I emailed my bs yesterday and she said my MO had to order the onco test, that she couldn't. But she told me before surgery she would be ordering it, why all of a sudden cant she order it ? She also said my tumor is to small (1.8mm's)..that just sounds crazy to me. I am going to insist that the MO orders it and Im going to insist on oophorectomy. If he doesn't agree with me then I will be looking for another MO. Thing is...Im at the best cancer center in boston so where do I go for a second opinion ?? This whole thing is so discouraging sometimes....
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Hi ganzgirl,
You have a very similar diagnosis to me (though my ILC was larger, and I'm technically stage 2 because of its size, but my lymph nodes were clear). My MO ordered the oncotype test, and it came back with a low score, which meant no chemo. There's no guarantee, but from what I've seen, most ILCs tend to be low oncotype scores. I should also say that there was some delay in sending my sample out for the test because of holidays and a mix up with the hospital pathology department, so there was a 4 week delay in sending it out, during which time I began to FREAK OUT. I called my MO and he was able to reassure me by saying that although the oncotype score could clear up any gray areas he was almost certain I would not need chemo. He did put me on tamoxifen during that wait period, which also made me feel better - though I see you won't be able to take tamoxifen, but there are alternatives like the aromatase inhibitors plus ovarian suppression to knock your ovaries out of business (this can be done surgically or via drugs). It is possible that your tumor is too small to test (though I would think not?) -- they need a sufficently large sample to get an idea of which genes are being expressed in the tissue. But again, everything I've read about ILC strongly suggests that hormonal therapy is the way to go, and that it is generally less responsive to chemo - and because your nodes are clear and it's small, this is most likely the case. The oncotype test is just a decision making tool - but there are other ways to get at most of the same information, and several studies have shown that traditional pathology scores (if you look into detail at that grade 2 pathology - there are really three components, and with ILC you automatically get a "high" score for tubule formation. Look at the mitotic score (how fast they're growing) and the differentiation score (how different from normal cells they look) and you can get additional information. With a grade 2 and ILC, the mitotic score and differentiation score are unlikely to be high. Look at the following link
http://pathology.jhu.edu/breast/grade.php
All ILC's get a "3" on the first one, then if you get a 2 on mitotic score and a 1 on differentiation, your total score is a 6 and into the "Grade 2" zone. For IDC's they typically get less than a 3 on the first score, but tend to be higher on the other two.
I did end up needing radiation after my MX, but only because my margins were very close. I stopped the tamoxifen for the duration of rads and then started up again afterwards.
Good luck - and if you want to read (though sometimes it's better not to!), read up on ILC.
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Ganzgirl my 1st MO fought me on getting the Oncotype test. He insisted it was too small to test even though it was between 1-1.5cm (yup not too tiny to test). My MO is in alliance with one of the best cancer treatment centers in Seattle too. I am lucky that there are a couple of different cancer centers here and I had thought about going directly to the cancer treatment he is in alliance with for my 2nd opinion but I thought about it and decided I wanted a fresh prospective from someone in a different cancer center and I'm so glad I did. Yeah, I hear you about discouraging, I think that is why I sorta dragged my feet on getting a 2nd opinion since I've never done that before and I had hoped in the back of mind that it would just work out with my MO. I have such positive interaction with my BS and PS and they all know each other that I just thought oh it's just a hiccup it'll get better...it didn't.
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One thing with the size of the tumor and the oncotype test --- compared to IDC which tends to make discrete balls of tumors, ILC tends to make long lines, and they usually measure the longest axis of the tumor in ILC, which might mean that a 1.8mm tumor with ILC really is more difficult to handle and has a smaller volume for sample prep than a similarly "sized" IDC. Ganzgirl, if you like your BS more than your MO, see if you can get the BS to order the test. Although my MO was the one to order the test, when my insurance company balked at paying for it, they put the BS on the phone with the insurance panel, because he was meaner, since they're both my docs and part of the same treatment team.
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Ganzgirl my tumor (ILC) was 2mm. I had second opinions at MDA and John Hopkins. They all told me it was to small for the test.
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