calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Hello Ladies,
I just received my first treatment of Herceptin on Tuesday. All is well...I will keep everyone updated!
Laurie0 -
Awesome Laurie - so glad you did well with your first Herceptin! Thanks for keeping us updated!
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Thanks Dancetrancer for the wishes.
I did see my MO Dr Mark Pegram yesterday who is also co-investigator of herceptin with Dr Slamon and he was not at all concerned about my 5 foci of micro invasion. He mentioned it was too microscopic and we do not need to treat it with Chemo or Herceptin. He strongly recommended Tamoxifen which I never wanted to take - As a matter of fact I never wanted to take any medication because I want to conceive. So the only option he game me was doing a MX to avoid radiation and Tamoxifen.
After second surgery my 3 nodes are negative and all margin except for superficial are more than 5mm, superficial margin is 2mm. This 2mm was close margin for Dr Pegram so we also need to think about that. I am seeing my surgeon again to discuss these possibilities.
As of now I am more inclined to do MX of left breast to avoid radiation, Tamoxifen and frequent screens (of course I will have to do screening for right breast but after having children I am planning to do MX for right breast also).
Even though I am inclined towards MX I am worried about Reconstruction if they take fat tissues from my bally as the very same reason that how that will affect my pregnancy to bare a child at a very same location.
Any advise would be appreciated.
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swearp, I am sorry to hear about the close margin, but glad to hear your doc agreed chemo/herceptin is not indicated for microinvasions < 1 mm.
I thought you had to have a BMX before they would say no Tamoxifen...? Not a UMX...reason being, you are at higher risk for recurrence in the contralateral breast once you have a diagnosis of breast cancer. I would discuss this with your doc to clarify.
Regarding recon, you could consider implants if you are concerned about using the abdominal region for a DIEP. Or, you could wait until after your surgery to do recon. You may want to post on the recon boards for more feedback on that path.
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Got the pathology review from Dr Lagios:
1) He believes there are 2 types of micro invasions type 1 and type2 and I belong to type 2. Ref : http://onlinelibrary.wiley.com/doi/10.1002/cncr.10451/full
1) largest focus of micro invasion is 1.3 mm and compare to less than 1mm from Stanford - meaning I belong to T1a and not T1Mic
2) ER/PR and HER2 for micro-invasion was difficult to read but it is equivocal, can be +ve or -VE compare to HER2+ and ER/PR- from Stanford
3) DCIS was -VE for ER compare to 20% +VE for ER from Stanford
4) KI-67 is 40% compared to 20% from Stanford
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Interesting about the type I and type II microinvasions - hadn't heard there are different kinds.
Sorry to hear you are officially t1a stage, but fortunately you are still just a tiny bit over 1 mm.
It's always interesting (and confusing, at times) to see the difference in pathology readings!
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I saw my MO yesterday. She would not recommend chemo or Herceptin for my very small (2mm) invasive d.c. She said her cutoff for Herceptin is 5mm and that even though it is high grade, at this small size the prognosis is excellent without Herceptin. When I asked about the possibility of Herceptin alone, she said she would not give it without chemo. She also said that she is "conservative" with regard to doing chemo. She will not do it unless she believes the patient will benefit from it. So she is treating my cancer mainly as DCIS. There were 3 foci of DCIS in my surgical excision, each of them only 1mm. I will be doing radiation and Tamoxifen for the ER+ status. The choice of Tamoxifen was because I have osteoporosis and the aromatase inhibitors are known to reduce bone density.
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Thanks for the update flatpikr. Wishing you smooth sailing with radiation and Tamox!
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Hi Everyone.
Checking back in. Finished 12 Taxol/Herceptin weekly. Continuing Herceptin every 3 wks. Finshed 25 radiation treaments and have 5 radiation boosts to scar starting tomorrow. All in all things are going well. Still have minor neuropathy that only started during the last 3 -4 chemos. Have some minor skin cancers (not melanoma) that dermatologist wants to deal with after radiation finished. Still very tired. Other life factors besides treatment likely big contributor to that. There were some bumps along the way, nothing major so far. Grateful for this thread, though am sorry all of us with any kind or stage of cancer are in this situation. Strange to see all of these body changes but God Willing things will get better as the treatment becomes more rearview. No regrets choosing to do all this at 5mm Her2+, hormone neg, grade 3. Was really on the fence before this thread, but even though there are so many dangers with the treatments, for me, I want to know I did whatever I could to keep this from recurring. For others, that may mean the exact opposite of not taking the risks of treatments, but given my overall life situation and stresses of other things, I'm glad I did. Thank you all. God bless everyone. Wishing everyone the absolute best.
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Hi Montana! So glad to hear you are on the other side of chemo and radiation - the biggest hurdles are down now! Glad to hear your treatment went well overall. I hope the neuropathy resolves for you soon. Your energy should improve as time goes on, for sure. I am almost 1 year post chemo now and am doing very well. Hard to believe a year has gone by. Glad to have it in the rear view mirror. Wishing you all the best!
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thank you Dancetrancer-yes, 5 years felt Very Good
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Updating my status after 2nd opinion on treatment. 2nd MO agrees that no systemic therapy is needed for me. She will put me on Arimidex rather than Tamoxifen and we'll monitor bone density. So I'm glad that no chemo/Herceptin was agreed by two excellent MO's at different treatment centers. It makes me feel much better about proceeding directly to radiation.
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Happy for you flatpikr!
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Thank you Dancetrancer for the continued support and encouragement!! And Congratulations on over one year out!! Very wonderful!!
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Thank you montana!!!
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Update on my side:
First of all my onco at Stanford still did not recommend any systemic treatment saying that it is too microscopic to treat with a fact that everything has been removed.
I saw onco at UCSF and MD Anderson and both of them could not decide one way or the other. Both said if tumor had been 2.5 mm, it was definitely in for chemo and herceptin but they said we need to dig more for this 5 foci of micro invasions. Both of these doctors are going to see biology of tumor one more time on tissue slides and then will get back to me on their recommendation. Onco at MD Anderson said even though there are only 5 foci of micro invasions - he want to make sure there are not abnormal cells on every slide, which may not be invasive but does not look like in situ also. He said that he will call Dr Lagios directly as he happened to know him also.
I am scheduled for left MX on july 10th.
Hope everyone is doing good. Will update you soon.
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swearp, thank you for the update. I admire your persistence in getting the answers you want to help you feel comfortable making a treatment decision. Best wishes for your surgery!
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Hi Everyone.
Hope all are very well. Am maybe going into a study of metformin and exercise in 2 months. (First opportunity I would be eligible, 2 months after finishing radiation.) After talking to the program director and googling, seems promising. Metformin (an FDA approved diabetes drug) may have beneficial synergistic effects with Herceptin. The study is about energy balance and blood sugar effects on cancer recurrence. The lady I spoke with says of things go the way they think it will, metformin may becaome standard treatment down the line. Have other oncologists mentioned it to anyone else here? Wondering what others' thoughts may be and throwing it out here for others that want to ask if it may be helpful for them.
Blessings to everyone.
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Hi montana,
Yes, metformin is definitely something I have read about and seen others getting on. One of my friends, in fact, is taking it without any problems.
I, too, am considering taking it, especially since I have become prediabetic since chemo/steroids. I am waiting to see what my next a1c test comes back at first. My oncologist thinks it would be a good idea, esp. if I can't get my blood sugar down any further through diet and exercise alone.
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Update on MD Anderson recommendation,
I heard back from Dr Valero's office and they reviewed all my slides. They said there are multi foci micro invasion but none is bigger than 1mm in greatest dimension. Although it is multiple there is no data as in what to do in this situation and Dr Valero does not recommend chemo + herceptin as benefit would be too small.
Kind of relieved.
Hope everyone is doing great.
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That is GREAT news swearp!!!
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Hi.
Got randomized to metformin in study. Wasn't happy (wanted to be randomized to exercise) but thought ok. This is what it's supposed to be and maybe will be fortuitous. Onc previously said she thought if I did get on metformin, not a bad idea since sugar levels have been creeping up, thought still not "bad" yet. Yesterday was first dose. Copious vomitting late last night and headache all day today. Think I'm going to drop out. Know I could probably get through and get my body adjusted, but don't really want to. A bit disappointed; a bit relieved. On the fence.
But also feel bad dropping out after all the pre-testing they did. On another note, though things basically ok, already getting nervous about upcoming one year mammogram in Nov. Did really well through radiation, not so bad on chemo and ok so far on yearly Herceptin. But breast has started hurting and though I've seen gyn for regular appt and he's not concerned, though he did say was worth a ph call to radiologist, am assuming it's things getting back to normal after trauma of radiation. Nerves coming back etc. Have radiation doctor appt in Sept anyway and not going to rush there now. Have been looking at internet sites about mortality rates etc. again like I did so much when first diagnosed. Long way of checking in here saying basically ok, have a lot to be grateful for, still so nervous if I'm honest and want to cry so much these days. Probably has to do with life situation in general about other things as much or more as bc, but just wanted to share. Don't want to be a downer, but in a way more scared about things than I was in the very beginning after getting over the initial shock of diagnoses. Thank you for listening. 0 -
montana I'm sorry you are having such a hard time. It seems to me right about that "almost 1 year point" is one of the toughest times for many women. It's hard to adjust going back to a "normal" life - you have to face it - life is never the same after bc, but if you grow from it and refuse to let it take away your present and future, life after breast cancer can be even BETTER. I am learning to appreciate things so much more. I have decided I will not let cancer take away my present and my future by obsessing about things that I have absolutely no control over. If I let cancer to do that to me, then essentially it has "won" even if it never comes back. That's the way I look at it, anyways. You have to LIVE YOUR LIFE.
You may want to consider counseling, meditation, minfulfuness, yoga, etc. All of those things are very helpful in moving forward. Hugs to you - you are in that difficult "transition back to life" time, IMO.
So sorry the metformin apparently made you feel so ill. Uggh! Maybe talk to the study people about your reaction before making a decision. They may be able to modify the dose...?
The effects of radiation can continue for years afterwards, so that pain in your breast may very well be related to that. Try to stop worrying about the "what if's" and realize that worrying isn't going to change a damn thing except for ruining your current present happiness.
Hope this helps - hugs!
P.S. Stop looking at mortality sites. Not helpful!
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New to the category! You can see my stats below in my signature, but a little more detail:
Mastectomy largest invasive tumor was 1.6mm
MRI core biopsy removed invasive 3mm tumor two weeks prior
ER+ 90%
PR+ weakly
HER2/neu highly amplified according to FISH (over 8)
ki-67 30%
Grade II/III (intermediate)
Age 49
Multidisciplinary conference at University of Chicago recommends anti-estrogen only; no chemo/Herceptin.
Meeting w/MO from U of C to discuss options on 9/4.
Personal preference leaning towards Tamoxifen with Herceptin-only for one year (no chemo).
Comments/thoughts appreciated, and I have read this entire thread as well as related threads. Uncertainty seems to be the operative word. Thanks, all!0 -
Bump
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Hi Rosamond! Sorry for the delayed reply!
Sounds like we have similar stats (though not exact).
Well, my thoughts, now one year out from chemo (TCH). Would I do it again if I had the benefit of hindsight/Monday morning quarterbacking, etc?
Maybe not. I now am prediabetic due to the high doses of steroids associated with chemo. I didn't even realize that was a possible complication. If I had known that, and known I'd end up with it, I probably would have done Herceptin only like you are planning. I had considered it, but my 2nd opinion onc at MD Anderson convinced me I really should at least try chemo because I was "young" with a higher recurrence risk.
Yet, I haven't recurred (so far so good), so it is a hard call. I wish I had a crystal ball for all of us. You are right, uncertainty seems to be the operative word. I wish I had a clear cut answer for you!
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Thank you, dancetrancer. I will report back after my consult with the onc.
All our treatments have SEs, and we must accept that we made the best decisions, given all the info available at the time that we made them. That said, I appreciate the honesty.
I hope your prediabetic status improves. Thanks for answering!0 -
You are most welcome!
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Montana - on the Metformin - I spend a lot of time on a diabetic forum (ADA site) and everyone there recommends only taking Metformin with food or on a full stomach to reduce the side effects. On the plus side, the problems tend to go away after a while on it for most people.
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Thank you so much for your thoughts and posts dancetrancer. The study folks consulted with my onc and the consensus is I'm allergic, so I'm out of the study due to violent vomitting reaction and still not feeling well 5 days later. I had Herceptin Monday and was fine. I had taken the Metformin on a full stomach. Maybe I ate the wrong stuff? Anway, it's now of the list of allergies to medicines.
Welcome to Rosamond! (Though am sorry any of us are here.) I'm no doctor but would check why they don't want to do Herceptin. I am praying it's the wonder drug for us all Her2+'s that it has been for so many so far. I initially didn't want to do any treatment (just Turkey Tail mushrooms that I'm taking with treatments plus a lot of other supplements now that chemo and radiation are over.) It truly is an individual decision and each person knows herself and what's best after doctors, praying, family, friends, however we decide. I'm not a year out yet so I don't have any definitive news for my situation, but after reading the things I've read, and heard the experiences of women on this thread particularly, I'm glad I'm doing Herceptin. Just a thought. Again, everyone needs what they know is best for them. Good luck to you and everyone in beating this.
Thank you again dancetrancer for your encouraging support and reminder to stop worrying since it just doesn't help or change anything for the good.
Blessings to everyone.
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