Stage II w/Lymph Node Involvement
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dixiebell,
My heart goes out to you. For what it's worth, I saw two different MO's. The first recommended chemo and MX, saying it was the "standard of care." The second one ordered the Oncotype test. My score was 21, in the low "intermediate" range. She recommended MX and radiation, plus 5 yrs. anti-hormone treatment, but no chemo.
If your Oncotype score is low enough, you will not likely benefit enough from chemo to make it worthwhile, especially since you are ER/PR+ and HER2-. Try to see someone at a large teaching hospital. Their team may be able to help you not only with the BC, but also with the cyst.
Hugs & prayers,
Aza
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Thank Aza its amazing the ladies here know the latest recommendations and studies and the drs do not. Or it may be that they would prefer to be overly cautious which is understandable in this liticious society but geez give me the latest and greatest info and let me decide!!!!!! Thanks again!
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Hi Ladies! Havent been on this thread in a LONG time! Hope you all are good!
Dixie baby, You are gonna be fine. Get your opinions, think things through, and know that we are all here for you. You my dear are gonna be fine I just know it!
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Thanks traceyz you are one beautiful lady!!!!
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Hi All: (posted the same message in a couple of groups) Met with my new oncologist (yes I loved him) he is at a teaching hospital here in new Orleans. My oncotype score was 5. Here is the kicker. He does not feel there is an adequate data supporting the node positive pts. My oncotype results came with a number and a page specifically for node positive pts. Yet he still recommends chemo. (the test was ordered by a different dr before I was aware I was node positive with a 5mm tumor my chane of node involvement was less than 10%) I'm a numbers girl. This is what I was told today. Forgetting about the oncotype I have a 70% chance to be cancer free and alive in 10 years. But I have a 30% of either having a recurrance or not being here at all. With chemo only that number goes to 77%. With hormone supression therapy that number goes to 77%. With both that number goes to 82% - nothing I do can give me better odds than that. I love statistics so being told all this has been so helpful. Radiation will not help because the entire section and all the nodes were removed (radical mastectomy) . So I said well those numbers do not make me feel like the tx is worth it. He told me this: "if you were forced to play a game of russian roulette and you could take out 1 bullet would you", I said of course I would, "he said this is no different". It has me thinking. I loved this man! Still not sure if I will do any tx but love the facts so I can make an informed decision!
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Dixiebell, I did fine with chemo too. Just take the meds they say before and after and its very doable. Ask your next onc about the meds with your liver. Don't be afraid of chemo Its going to save your life.
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Dixie,
Good luck in making your decision. Given that you had positive nodes, and grade 2, the chemo will probably blast the suckers into oblivion. I also did the chemo for ILC 7 years ago with no regrets. Just thought I would throw my 2 cents in!
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Snicklefritz -- love the name!!!0
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Hi Dixie,
If I am following your posting correctly you have had two opinions. I say go for a third before making your decision. If chemo is recommended make sure you know what regime is being proposed and how it will effect your other health issues. Not all chemos are the same. Is it possible for you to go to or to send your medical records for a consultation to one of the big cancer centers, like Memorial Sloan Kettering or MD Anderson, (I know folks who have sent their records to UCSF and talked with them over the phone) etc...
I had three opinions, all three recommended different chemo regimes, and I chose the one I thought would have the best results and least long term SEs for my situation. And actually all three said the chemo regime recommended by the others would be just as successful. It came down to management of SEs in making my decision.
Good luck with your decision, trust your gut and have no regrets, you are the best person to make the decision on what is right for you.
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Thanks everyone for the feedback!!!
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Hi Dixie...I had a choice to add chemo or not to my treatment. My Onc said it would be a benefit to me, but a small benefit. I chose to do the chemo because I felt I had to do everything I could do to beat this. For me anything I could do to add numbers to the odds on my side was worth it. I am now half way through chemo (Taxotere/Cytoxan) and I am doing OK. I have lost my hair, but that has not bothered me. I rather enjoy the lack of leg hair!!! There has to be some positives!! I purchased beautiful headcovers and a smoking wig that I can wear in public. At home I usually go topless! I take medication prior to and the first couple of days after chemo to help with nausea and have had no issues. I feel pretty good the first couple of days after chemo, then have a couple yucky days and then start to feel good again. It isn't pleasent, but doable. I drink gogi juice (8 ounces a day) which I believe helps with my white cell count, which has been excellant. After the chemo I will follow with rads, this was always in the cards for my treatment plan and then tamoxifen for 3 years and something else for 2 more.
I know everyone is different and we all react to chemo in our own way, but I wanted to let you know that it isn't necessarily horrifying or difficult. The most long lasting side affect for me is just that I tire out easily now. So I have learned to take it easy and that a short nap is OK.
You also have the cyst to think about which will obviously be a factor in your decision. I hope that you are able to get all the info you need from your Doctors and that you will be able to make a decision that brings peace in your heart.
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I had 1 positive node with ECE....freaks me out also, but I am now 5 1/2 years survivor!!!! I had lympectomy, chemo and rads and Femara. Had to stop taking it after 4 years. Just couldn't handle the se's any longer.
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rmdevillers... your diagnosis and treatment seem very similar to mine... I had a 1.9cm tumor and a .38 micromet in SN... had a lumpectomy in Dec, had 6 tx of TC, no issues, same thing with day 3 or so... felt yucky, but then fine... but then instead of rads I opted for BMX and recon... I will start tamoxifen in December for about 3 years (pre-men) then take some post-menapausal med for 2 years... no regrets... I have no lasting effects from chemo... my MX was much harder on me. I missed no work to speak of for chemo, but missing tons for the MX... BE CAREFUL not to take any antioxidants while on chemo.. or anything with grapefruit... it counteracts the chemo... not sure what gogi juice is, but check it out.
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Hi everyone well opted out of chemo and went straight to the AI's. Pet scan negative and started on meds today! I feel it is the best decision for me. For anyone just starting out there is a great study that I really wish I could have been in but it is not at the facility I am at for 2 more months. It is in most major cities now. It was the results of phase 2 of this study that helped me decide my treatment path. Thanks everyone for helping me make an informed decision that was right for me! REMEMBER ONLY YOU and you healthcare team CAN DECIDE WHAT IS BEST FOR YOU.
RxPONDER Trial (SWOG S1007)
Opened in January 2011, the RxPONDER Trial (Rx for Positive Node, Endocrine Responsive Breast Cancer) will reveal whether chemotherapy benefits patients with node positive breast cancer who have low to intermediate Oncotype DX® Recurrence Score® result. The trial also seeks to determine whether there is an optimal Recurrence Score cutpoint for these patients, above which chemotherapy should be recommended.
The trial is being conducted by SWOG with the participation of all the major National Cancer Institute-funded cooperative groups in the United States.
Researchers plan to enroll 4,000 women with Recurrence Score results of 25 or less who have early stage, hormone receptor-positive, HER2-negative breast cancer that has been found to involve one to three lymph nodes. They expect to screen over 9,000 breast cancer patients to identify 4,000 with Recurrence Score results in this range. The use of Oncotype DX in patients with node-positive breast cancer has been validated in several studies including a previous SWOG led-study, SWOG 8814, ECOG 2197 and TransATAC. The test has been available for use by physicians in clinical practice for node-positive disease since 2008, and it has been reimbursed selectively in the U.S. for this patient population.
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dixiebell - I am glad you made your decision which is right for YOU. I totally agree, only you and your healthcare team can decide what is best for you.
Thanks for the info on the trial. I wish it had started a year ago, I would I have loved to participate.
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Hi all, I'm at week #5 of Taxol, and is having a really hard time with nausea and is very achy on day 4. I'm on Zofran for the nausea. I have no apetite. I live on soups and Ensure. My Onc. mentioned that he can lower the dose and still be effective. I'm thinking I might take him up on the offer to see if that helps with rhe SE's. Any suggestions?
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Diagnosed 3 weeks ago. first surgery was a lumpectomy with 3 nodes removed all of which came back positive. I saw the surgeon today and was floored to hear this. More surgery on monday to remove the other nodes. Chemotherapy is a month away but I feel ok after reading the posts on this thread. I'm so glad you girls are out there.xx
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pattyanne... sorry to hear that... good luck with the other nodes... how large and what type was your tumor?
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Glenna56 - My onc had to lower my Taxol dosage because my liver enzymes were high. She also said that it would be effective at the lower dosage. She said she calculates the amount based on weight which gives her a range, and she started me off at the top of the range, so there was room for adjustment. Sorry you are having a rough time. Also, by lowering the dosage, it did also minimize the SEs for me.
Pattyanne - Sorry to hear that you are joining us. There is a lot of information on these boards which I found to be very helpful, especially going through chemo.
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Thank you proudmom-wife. I've sent them an email, so I'm waiting to hear back from them. Still feel terrible today.
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Pattyanne - I'm sorry about your diagnosis. I was also surprised that I had positive lymph nodes (MRI didn't show anything so the docs were optimistic I was node negative). But I am halfway through my chemo, still working full time, and still feeling somewhat normal. You can do it!
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Hi All,
Did all of you automatically get bone scans and CT scans when you found out you had lymph node involvement?
I wonder if my treatment team is just assuming that I have mets (and therefore Stage IV) because my tumor is (was) Grade 3. So I may not even be Stage II.
I meet with the BS on Sept 23 for a post-op (lumpectomy and SNB surgery). The CT scan hasn't been scheduled yet but the bone scan is Sept 27. And I meet with the MO on Oct 2.
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etherize,
I think MOs are all over the board when it comes to scans for node positive cancer. I had PET scan, but I really do not think that is standard of care. I was totally suprised with my small 1.1cm primary tumor that I was node positive. Statistically speaking you are most likely Stage 2, try not to worry. Remember bone scans are nonspecific (other things besides cancer can light up).
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OK, thanks christine47. I have Kaiser out here in California, so it's probably standard for them to order them. I'll try not to worry.
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Glenna ... Ask for Emend for the nausea... Had it with my AC & T... Did great... Totally took out the nausea
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etherize... my MO does not order scans for stage II cancer patients.. but some do... My MO says that scans often have false positives and then further tests are needed and I can see how this can happen... I had a CT scan this summer before my DIEP surgery (they were mapping out my blood vessels) and it did show no metastasis, but it showed a fluid collection in uterus and then I needed to have a D&C... that was fun
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My Mo sent me for a pet...it came back clean...so far so good. I was given specific diet instructions to try to avoid the false positives. No sugar or carbohydrates for the 24 hrs prior to the test and only water to drink the day of until the scan is done. They use a radioactive sugar injection before the scan so maybe that is what causes the false positives?? Not sure. Just happy mine was clean as i was very worried that I found it too late with 3 positive nodes. Thinking they will do rads too but have gotten 2 opinions and feel like if it's aggressive lets treat it aggressively! Such an A type personality! Gotta get some sleep for round 1 chemo tomorrow...so nervous!
Maggie
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maggie, good luck to you tomorrow!! Nervous is normal, take a deep breath and try and get some sleep.
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Maggie... Good luck... Its normal to be nervous, and for me was happily surprised that chemo was such a non-event... You'll be fine.
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After my surgery & my final path showing 2 positives nodes, I had a PET/CT scan. There was a tiny spot that lit up in my axilla. It was said to be possibly a small micromet & believed that radiation would take care of it if it was. My RO thought it was a result of the surgery & not any kind of node involvement.
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