Possibly no chemotherapy??

Sereena · January 2011

Just met with my oncologist and was surprised that with 3/4 nodes positive he may not do chemo unless more nodes come back positive after my axillary node dissection on Tuesday. I really question that and just wonder if anyone else has had the same treatment suggested. If all nodes come back egative nhe will do the oncotype test and base treatment on that. A little worried:-(

catbill · January 2011

Sereena-

As far as I can figure from my own situation, grade one is sort of a "different animal". Chemo works best on fast-growing cancers, and as grade one doesn't really grow faster than your normal cells, it isn't as responsive to chemo. I found my oncologist waited until she had the oncotype results before she decided how to treat me. My was an 8 so no chemo for me (no positive nodes), and I started on Arimidex the next day. It seems with us ER+ grade "one-er's", the oncotype plays a large role in determining treatment.

Good luck on your node dissection. I hope no more positive ones are found! Let us know how it goes.

Sereena · January 2011

Thanks Catbill for your info. That is pretty much what he told me but in "doctor language". I am concerned that the nodes are already involved and why does 1 more node make a difference. He will not order the oncotype till the all node results are in. Just sitting here worrying about it.

lago · January 2011

*NCCN Guidelines for Patients, 2010 version. It is available in pdf form online:
http://nccn.com/patient-guidelines.html

Very useful for understanding treatment for your diagnosis.
Please note this is a guide not the law
*National Comprehensive Center Network
----------------------------------------

Physicians guidelines but you will have to register and "fake" you are a physician. I haven't done this: http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

mollymack · January 2011

I would seriously consider getting a second opinion.

Sereena · February 2011

Finally sat down with my oncologist to discuss the long awaited results of my oncotype test. Score came in at 10. Of course that creates a dilema for me. I will only benefit 1 and at the most 2% from chemo. So is it worth the side effects when Hormonal therapy appears (through new studies) to have a better longer term benefit even though I have 3 positive nodes. 2 nodes had only microscopic cancer cells and 1 node had a 5mm cancer. My tumor is only a Grade 1 and my ki67 is only 2% which is VERY low. I asked him if it were his wife would he recommend chemo, he said he would recommend her to the chief of oncology at Dana Farber (his boss) and he is sure he would NOT recommend chemo. Radiation and hormonal therapy only. I think I will use the weekend to think about it. Worried about those positive nodes:-( Really looking for some insight on this one!

heathertoo · February 2011

I would love to get that recommendation! I am trying to get a 2nd opinion at Sloan-Kettering or Dana Farber hoping for someone to tell me no chemo is ok for me. I had a larger tumor and also some lymphatic invasion, but only 2 nodes positive. I may or may not qualify, but the first step is to get a 2nd opinion from someone who knows Sereena, who are you seeing at Dana Farber? Good luck with your decision! From my web-research it sounds like your dr is giving you the most up-to-date recommendations that they are using in Europe, based on studies showing that ER+, few nodes positive (and a few other criteria) do as well or better on hormone therapy as on chemo+hormone. It's statistics, but it's pretty new. Search on "Gallen" and "breast cancer" and "2009" and "recommendations".

Sereena · February 2011

heathertoo,

I am seeing Dr. Daniel Morganstern (Faulkner/Dana Farber). Although this treatment is based on new studies he professes not to be a pioneer. I am on the fence and need the weekend to think about it. I'm not dying to get chemo but I don't want to die without it. You don't say what grade your tumor is. Do you know your ki67 percentage?

memory · February 2011

Even though my tumor was larger than they'd like, 2.1 cm at its largest point (; it was shaped like a triangle; I tried to convince my oncologist to add all the sides together and divide by three, that would put me at stage one; better prognosis. Luckily, she has a sense of humor) my onc told me that since it was grade one we'd better wait for the oncotype. The score came back 12, and also told me I'd derive zero benefit from chemotherapy, and that actually the outcome might be slightly negative, i.e., there might be some damage. I've read elsewhere that 1 centimeter or larger usually calls for chemo, so yes, grade one must definitely be a different animal.

Sereena · February 2011

I am driving myself crazy!!!! Cannot make the decision to DO or NOT DO chemo. Although my oncologist said there would probably only be a 1% and at best 2% benefit w/doing chemo I still am finding myself saying "REALLY?????" I would start radiation process next week for 6 weeks and THEN hormonal therapy....REALLY???? Well, what about any microscopic cancer cells that may be lurking in my body NOW. I can let that continue to happen for another 2 months? REALLY??? 3 positive nodes...but he really only counts one because the other 2 only a few microscopic cells. I am looking to hear some positive and proven thoughts on this......HELP!!!!!

eileen1955 · February 2011

Just sending support, Serena. I totally understand your angst over this.

I have the "flip" diagnosis of you, in a way. (Just speaking as a lay-person) Mine was small, no nodes but high grade. So I was shocked to be advised to go for chemo. But it made good sense since chemo attacks quickly-growing cells. and I am triple negative; so I had to use what was in my arsenal.

I have impaired hearing due to chemo; but I know I did what I had to do.

Just sending out vibes that I understand where you are at. Even tho we have different path reports.

Sereena · February 2011

Thanks eileen.......support is so important Smile

ruthbru · February 2011

Oh man, I hope your second opinion will give you clear answers. When I was diagnosed (4 years ago), a Stage II tumor was an automatic ticket to chemo....no matter what else was going on with grades, nodes, hormone status etc. Best of Luck! Ruth

Sereena · February 2011

ruthbru, Hormonal therapy plus radiation (with chemo up to me) is only being recommended because my tumor is small at 1.2 cm and it is a grade 1 which is very slow growing. I think in a few years this treatment will probably be the "standard of care" for grade 1 stage II cancers. It still though has me wondering and I am still not completely settled with the idea of NO chemo. My oncologist is presenting my case at a clinical conference tomorrow. I will at that time probably have more than several oncs. who will have had some input on my reports. Hopefully it will give me some relief! I need it!!!!

ruthbru · February 2011

Let me know what they come up with....ask for a sleeping pill prescription if you need one. Deciding WHAT to do is the hardest part of all!!

PinPDX · February 2011

Hi Sereena,

I had a 2.5 cm grade 1 tumor and was sure that, given the size, I'd get chemo. However, my oncotypeDx score was 9 and as others have said the risks of chemo outweighed the risk reduction for a recurrence. The biggest "bang" (i.e. way to reduce the chance it comes back) is with hormonal therapy (Tamoxifen or AI). But my nodes were negative. I do think that as time goes on, the "biology" of the tumor is becoming more important than the size and even a small # of nodes. But I understand your concern about the nodes and agree that another opinion makes sense. Make them explain! Wishing you well!

ICanDoThis · February 2011

My oncologist said no chemo with small grade 1s, they didn't even do an Oncotest.

So, I got a second opinion.

She said no too - and, having actually known someone who died from chemo (heart was destroyed by Adria), I decided to go with it, but sometimes I still feel like I didn't do ENOUGH.

But after 3 years, it's looking like I did.

Don't worry- you still got cut and burned, and there are days when tamox will make you feel like you were poisoned Tongue out

sundermom · February 2011

Sereena - Grade 1 must be very different. I had one macro-met in node #1 and a micro-met in node #2 and I'm in the thick of DD AC-T chemo. I was told a single node would be a ticket to chemo taking into consideration my age (37). The thing with BC is that protocols are constantly changing. It sounds like your onc is right on the pulse of current research. Sit back and enjoy the fact you may not have to endure chemo and all the unpleasantness that come with it We know hormone therapy is the best med for those of us that are ER+.

Tammy

Sereena · February 2011

Well, my oncologist is recommending AI's and that would be because at 52 I am post-menopausal with a 1.2cm grade 1 tumor. I think, tsundermann, with a grade II tumor and I am assuming you are pre-menopausal, chemo was necessary. I will know tomorrow afternoon how comfortable I will be, making the decision to not do chemo. One more night to think about it.

aussieched · February 2011

Hi Sereena,

I can't tell you how great I felt when I just read your post. My treatment was over 3 years ago, and at the time, I was advised at the age of 52, the oophorectomy, radiation, and AI was a good option for me. Since the treatment and now having more time to research more, I have really been scared that I did not do enough treatment NOR chemo to treat my bc. I had a micromet 1mm, and that now really weights on my mind as most other posts that I read, all say they have had chemo, even when they have not had a micromet, so maybe my doctors were ahead of their time also. They are top specialists for breast cancer in Sydney AUS, so maybe they were right after all. Or maybe I am getting this thread wrong, maybe this is only an option for ILC.

Thanks ched

Sereena · February 2011

Hi ched, I am glad you saw my post because like you, it makes me feel better that other women have been offered the same treatment. You say you had a 1mm micromet. I had a 5mm macromet and a few microscopic cells in 2 other nodes which my onc said he wasn't even factoring in. My doctor is out Faulkner/Dana Farber in Boston, MA. The Chief of Oncology is who told me that my case was being presented today at a clinical conference. Boy, what more could I ask for.....well, except maybe to not have BC. I had my last night of sleep on this so later today (after the conference) I will post what I have decided to do. I hope whatever decision I make I am 100% settled with it and that I will be able to put this all behind me. Oh, one more thing, the Chief of Oncology here at DanaFarber is cutting edge.

Sereena · February 2011

Well,today my oncologist presented my case at a clinical conference with 10 oncologists present. The overall strong consenus was to NOT do chemo and to proceed with radiation and aromatase inhibitors. What more can I ask for......and to think I spent the whole long weekend thinking about whether or not I should do chemo, lost many hours of sleep and to now know 10 oncologists from Dana Farber feel it is not the treatment they would do. I was also told that the "standard of care" was discussed and that they felt it will eventually change for grade 1 tumors w/little node involvement. I believe that includes IDC and not just ILC.

Lee7 · February 2011

wow..can you give any more details about the reasons for their opinions? Is this the same for IDC?

Sereena · February 2011

My oncotype dx score came back at a 10 which is in the middle of low risk for reoccurence with 18 being at the top of "low risk". Based on that score, the tumor being a grade I, my ki67 being only 2% and the fact that I am post-menopausal....I showed only 1% and at best 2% benefit of chemo. Not worth the risk and in fact could hurt me. These doctors feel very confident that the "standard of care" as we all know it will change soon. This goes for IDC grade I tumors as well.

ruthbru · February 2011

Congratulations!

aussieched · February 2011

Hi Sereena,

Thanks again for posting, and for the outcome of todays conference, It certainly makes me feel a bit better about my situation (above). 3.5 years ago when I was diagnosed we weren't offered the oncotype DX assessment, just wasn't available in Australia. I believe the odd person in Aus is now having it, however it has to be sent to the US I believe, so takes a while to get the results Meanwhile I have spent many a sleepless night thinking about "I should have had the chemo", and when everyone states, Oh, you didn't have chemo, and I get that unusual look on their face, I really crumple inside. At the time of my and my doctor's decision, it just wasn't the done thing here in Australia, not to have chemo for what I had.

Great news for you Sereena, have a good sleep tonight.

ched

cookiegal · February 2011

Yea...I am glad to have some more node positive sisters who did not do chemo. Sometimes I felt like I was the first.

Sereena · February 2011

Ched, I certainly can understand those sleepless nights and I hope you now can have a bit of peace. What more can we ask for than the opinion of 10 oncologists plus my onc from a top world renowned hospital. The only thing better would to be to not have BC at all. Remember too, you had a "2mm micromet" and I had a "5mm macromet" in the nodes. and the decision by all was no chemo. I think all of us, no matter the treatment will always worry about our mortality....its just normal and natural. I think I may start a thread for "Node positive women/No chemo".....that should bring in some more positive thoughts. Sleep well. ~Sereena

Aza · February 2011

Sereena, congratulations. You must feel so relieved not to be facing the dreaded chemo. With an army of 10 oncologists behind this decision, you can now breathe easy and sleep well!

Sereena · February 2011

I do feel better but will feel even better when I know that the "standard of care" for grade I node positive BC changes. A little more comforting.

ruthbru · February 2011

I would say that whatever you decide; once you make the decision, close that door and never open it up again. You will find out as you go along that they change their recommendations all the time, so at some point no matter what you do, some study will come out that suggests that you should have done something different, and the 'maybe I should have done.......' will drive you crazy if you dwell on it.

Possibly no chemotherapy??

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