Stage II w/Lymph Node Involvement
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Hi I am a 7 year survivor with stage 2 with 2 micromets. I had a mastectomy with immediate recosntruction due to mulifocal diease although my tumour was tiny.I did not have chemotherapy as i was that time very sick with myocarditis and pericartidis and heart failure( so the risk out weighed the benefits) however I did have radiotherapy and have been on tamoxefen for 9mths then switched to arimedex followed byFemara none of these medciatons failed but i had to change due to side effects. I am now past my 7 year and still in Femara by choice. I reveived some excellant advise at the beginin of my journey (throw everyting you can at eh beast) from the start.Good luck
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Hello Marcy,
my chemo regimen was 4 rounds every 3 weeks of Cytoxan and Taxotere. I got the following side effects: tiredness, some weird taste in mouth, menopause (temporary hopefully!). Hope this helps! Good luck with everything.
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Marcy, I had T/C over a year ago, four rounds. Then I tried Tamoxifen and wanted to die from the horrible depression so I stopped that. My onc then wanted me to start Arimidex (the chemo threw me into menopause) but I was sick of dealing with side effects and just pharmaceuticals in general. If I get a recurrence I will deal with it but I will NOT be going through chemo again. I believe it was traumatic for my immune system, which will probably never recover from the damage. I still have cognitive problems and lingering fatigue. I have more faith in my naturopath than my onc. By far.
I wish you well with your decision and hope things go well for you. Be proactive with constipation and ask for Emend for nausea- it worked great for me.
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Hi DesignerMom, I had a SNB and 1/2 nodes were positive with 1MM one node. My surgeon didn't think I needed to have more nodes out, and I didn't want anymore nodes out because of my job(horticulturist), and hobbies(kayaking). I had to go see my new Onc. and convince him, but after my big speech, he said having more lymph nodes out, would not change his diagnosis, which was dose dense chemo. TAC and radiation. Now, I still can't lift my kayak, and perhaps will always question, my decision. There are always what if's, no matter what we do.
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Hi Marion,
I'm new here. Our diagnosis is similar. My SNB came back false negative, later positive for micromets. They did a full dissection on 5/13 and I am waiting for those results. My surgeon says that in spite of the fact that I had 1 positive node (so far), they may not do chemo. My Oncotype score was 16. I see you chose chemo and would welcome knowing how you came to that decision. As I have 1 positive node, I just don't want to take chances. Also, a technical question for anyone. How do we know when someone posts a reply? I can't even remember where I have been on this site, much less get back there!
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I mark the sites that I like to visit as a Favourite then when I log in I can click on My Favourites and find the list immediately. It will tell you the last time someone has posted. There are lots of technical things I don't know, so someone else is better able to help you out with the other details.
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Thanks Leggyj,
I think some of the best advice I read on another post was to project out a year. Would I regret doing chemo or not doing chemo? For me, I just want to make sure this doesn't come back. I can handle the chemo if it will reduce the recurrence. I just don't want to have regrets that I SHOULD have done something. Right now I only know of 1 positive node (others still in pathology). I am hoping when I get the rest of the information I won't feel like I am in a "gray" area. Sure would be nice if things were black or white...not how life works!
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Designermom mine was a little farther along than yours...I was stage IIB, but I like you had a small child. An 8 year old boy I just have to be here to raise. I hit it with everything I could. I had double mast, 6 rounds chemo, 33 rads, and now I'm taking tamoxafen. If it comes back, I can say I did everything I possibly could. I am in no way trying to talk you into something. I would wait until your final path comes in and then see what your onc suggests. It is like you said though, just something to think about......did I do everything I could.
Good luck to you sweetie and you will figure out what is best for you.
Susan
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Designermon, I had 1 positive node out of 15 taken out and I had chemo. I had four rounds of taxotere and cytosin (sp?) I did have a double mast and no rads. Everybody is different, so please take the advice of your drs. Good luck!!
Hugs, Kathy
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Hello Designermom,
I decided to do chemo based on 3 things:
-my age : 33
- one positive node : 0.8 mm, a micromet.
- my oncotype score: 21, in the dreaded intermediate "grey area."
My oncologist was not completely sure I should do chemo. He thought Tamoxifen was the most important thing I could do. He did not seem concerned with the micromet. He also thinks that the oncotype score should determine if you do chemo or not. He thinks that prescribing chemo to a patient with a low oncotype score is like medical malpractice!
It seems that things look good for you: your oncotype score is low, you might not do chemo!
Let us know what your lymph node dissection pathology results are. Hopefully, they are all negative.
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Susan, Kathy and Marion,
Thank you so much for your feedback. I am just trying to decide things in small increments and keep moving in the right direction. It really helps bouncing things off of you. I know I don't have to, but I still try to protect my husband and friends from some of these struggles and concerns. What it comes down to is I am really the only one who can decide. I am praying for clarity once all the results come in. Right now I just wish I could get the anesthesia OUT of my system. It's 5 days since my surgery and this time I am still "weird", just can't concentrate or feel clear yet. I asked my doctor why I reacted so badly this time. She told me they had to give me more because I kept swinging and punching at them. At least the thought of that gave me a good laugh!
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Hi everyone! Greetings from Australia! I just love this site... I was diagnosed in Feb 2008, with 5mm of cancer in one node in addition to my 9mm IDC. I was wondering if there are any long/longish term girls out there who decided not to continue with any aromatase inhibitors. I have been on Femara and now Aromasin for about 2 years and I'm finding the side effects daunting, particularly the fatigue. Like most of us I suspect, I feel about 100 years old and am a complete zombie some days!
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Okay, more information is in. The Oncotype DX test came back in the “low” risk area, which is good. Based on my 16 score, they say that I should only have a 10% chance of recurrence in a 10 year period. That doesn’t sound so good to me, but they assure me it is. HOWEVER, those stats are based on lymph node negative women. So it is very hard for me to think I am in that club, as I had one positive lymph node…which means the cancer did start to travel. The good thing is that the lymph node “caught” it. However, I read often of women who had negative nodes where the cancer traveled to other areas. So many variables, so complex, so CONFUSING.
The pathology on the lymph nodes that were removed last week came back negative. All 9 that were removed were negative. Which is great! But still doesn’t help me make a decision about whether or not to do chemo. In speaking to my surgeon, she says that more and more doctors are beginning to base their decision on whether or not to do chemo on this Oncotype test. But the statistics aren’t huge yet. Nothing like being a guinea pig on the cutting edge of science! My surgeon said that there is no “wrong” decision either way, I have to be the one who is comfortable with whether to DO or NOT do chemo. I will meet with my Oncologist next Wednesday armed with all the research I can muster between now and then.
I'm wondering if there are any of you out there that were lymph node positive and decided NOT to do chemo and what your reasons were?
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Okay, I got more information. Now I know my Oncotype score is 16, which is in the low range. Based on this score, my recurrence risk is 10% in 10 years. HOWEVER these stats are based on lymph node negative women, and I have one positive node. So I don't think I am really a member of this club. The pathology on the lymph nodes they removed last week came back negative. So now I know I had one out of 10 nodes test positive.
My surgeon says more and more doctors are beginning to decide on need for chemo based on this Oncotype test, however the statistics aren't huge yet. And most of the stats are on lymph node negative women. Nothing like being a guinea pig on the cutting edge of science! She said there is no right or wrong decision here. I have to be comfortable with whether to DO or NOT DO chemo. I will meet with my Oncologist next week. Between now and then I will try to arm myself with as much information as possible to make this big decision.
Are there any of you out there who were lymph node positive and decided NOT to do chemo? Would you share your reasons for making that decision?
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Hello Designermom,
Great news! No cancer in your other lymph nodes, you must feel relieved!
Did you ask for your Oncotype pathology report? Mine had two graphs. One for node negative patients and one for node positive patients.
By the way, how big was it in your lymph node? Mine was a micromet, 0.8 mm.
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Hi Marion,Yes, I am grateful that the other nodes were negative. In the sentinel node biopsy, like you, they found micromets. My oncotype only had one graph for node negative women. I am seeing my surgeon tomorrow (to again drain my axillary incision), and will ask her if they forgot to copy that part of my oncotype report. By the way, if anyone wonders, I felt NOTHING when they removed the excess fluid, even though the syringe was scary. Now I am much more comfortable, don't feel like I have a golf ball in my armpit. Still wondering if any node positive women elected to NOT do chemo and what made them decide not to.
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I don't even remember my Onc. telling me anything about oncotype, but then I do have chemo. brain.
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Radiation?
I have 2 positive nodes, premenopausal. My docs don't agree on rads! How do I decide? Anyone face a similiar decision?
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I'm pre-menopausal and had 4 nodes positive, 2 of which were micromets... and my radiation oncologist felt very strongly about me having radiation. He said they are finding more and more that having rads is impacting over all survival as opposed to simply reoccurrence and that he would have encouraged me to do it even if I only had one node positive. With my age (33) I felt like I needed to throw absolutely everything I could at it so I said, sign me up!
Good luck with your decision!!!
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Hello kiki1965,
No rads for me because I elected to have a mastectomy, not a lumpectomy. If I had had a lumpectomy, I would have had rads.
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I forgot to add that I did have a mastectomy. I did not get boosts though, just 28 rads.
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Marion -- I'm the same as you: it was no rads for me if I had a mastectomy; rads if I had a lumpectomy only. Some women who have mastectomy also have rads though... especially younger women (45 and under).
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Marion - I'm pre-menopausal, had lumpectomy and had 3/17 positive nodes. My surgeon was surprised I had any since the MRI and clinical exam did not indicate any positive nodes. I had lumpectomy so I will be starting rads about 4 weeks after my final Taxol treament on June 4th. My onc also said to hit it with everything we could up front which I agree with since I hope I'll never have to deal with this again. Gina
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So I met with the Oncologist yesterday and it was very enlightening. She said the Oncotype test was really designed for lymph node negative cases, though it can help shed light on others as well. When asked about the opinion of my sugeon that chemo would not help my cancer (because my 16 low score), she said that in the Oncotype study they used only AC chemo on the patients, therefore it had no benefit. Had they used other chemo like TC, it may have had benefit. So that changed the whole picture for me. It also pissed me off that the Oncotype folks did not fully disclose this. Their stats don't necessarily mean that ANY chemo would not benefit low score women, just that the AC chemo did not benefit them. My Oncologist said that in my situation she felt I would reduce the risk of recurrence by 35-40% by having chemo. For me, with those odds, there is no decision. I am scheduled to begin TC on June 11. Of course now it is all about the HAIR. I was fully prepared to accept complete hair loss (already started digging out scarves), now I see these postings about Penguin cold caps preventing hair loss. I am SOOOOO tired of all this research and decision making!
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Hello designermom,
The fact that the surgeon and the oncologist disagree on the benefits of chemo would bother me. Did you see another oncologist? Are you planning on getting a second opinion about having chemo?
I have never heard about the oncotype test only using AC. I am going to have to research that! I see my oncologist in 2 weeks, I might ask him about it.
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Hi Marion, Yes, I found this quite disconcerting if it is true My Onc seemed to say that she is very careful to use the Oncotype score to be the deciding factor in lymph node positive women. She seemed to indicate that the reason low score women did not benefit was because of the chemo used in that study (mostly AC). She thought if they had used other chemo including T, the results might have shown that even women in the low score range might have shown benefit. My friend's husband is a doctor at Sloan Kettering Cancer Center here in NYC. I plan on picking his brain. As of now, I am scheduled to begin TC chemo on June 11. Now I am finding that CMF and TC are almost equal in outcome and CMF has far fewer SE (neuropathy, hair loss). SO!! I am once again, back in research mode!
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Marcy - I too had an allergic reaction to the epirubicin in FEC. I still have the scarring and "bruised" vein from my first iv infusion last Oct. However my onc did not change my chemo regime. For my subsequent infusions I had a PICC line put in and no more reactions for any of the other 5 infusions.
DesignerMom - there is so much information available on here but in the end it is your decison. I think you are in the right frame of mind by wanting to "throw everything at this". That was my reaction too and I do not regret anything I've done so far - MX, 6 rounds of chemo and 28 rads. I'm now on Tamoxifen, Zometa and contemplating an oopherectomy (removal of tubes and ovaries).
I have a wonderful hubby, 2 kids, 2 dogs and plan on sticking around for many years to come!
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Hi MarieK, I'm with you about throwing everything possible at this. It is my greatest wish and prayer for all of us that we can fight this battle so well now that we will never have to fight it again. We normally spend our summers on an island near Vancouver, will miss the blackberries this year, due to chemo schedule.
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Hey Designer Mom,
I will eat the blackberries for you. I have been caught by busloads of tourists stuffing my face with bicycle next to me. Is going to be a great crop with all the rain we are having. They are blooming here as I write this.
Seriously, knowing what I know now....yes, I think chemo is the right decision. You have to assume the worst case which is that anything that made it to your lymph nodes could be lurking elsewhere in your body.
I would look into cold cap, as think you are having four total treatments. You can do this 4 times. Twelve times is a different story....just not worth the bother.
Was wondering if you can get to your place sometime in September. Still blackberries, and you should be OK to travel, even if for a short time.
Good luck with everything. - Claire
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Hi Claire, Eat, eat, eat those berries. I hear they are high in anti oxidants, can't hurt! I will talk to my Oncologist this week. She recommended TC X four cycles. I now hear that the older, tried and true CMF X 8 has comparable statistical outcome. It is less toxic and fewer mean SE. Usually you don't lose your hair. If it is just a matter of doing 6 months instead of 3 months, I might opt for the fewer side effects. Happpy cycling!
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