Stage II w/Lymph Node Involvement
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Afternoon!
Had my meeting with the Onc yesterday which was a long meeting, but interesting. Since my case is going to the Tumor board on Monday, he made sure I understood what the 'debate' was over my case: 1) Do I need more surgery to clean out the remaining DCIS that is in the margin and 2) Do I need another lymph surgery. He told me he would definately vote on Monday, that to NOT have another lymph surgery to test more nodes. He specifically stated he felt to "go in there and start digging around, will cause more harm than it's worth" . That's fine by me!
I go back to see the BS on Tuesday, the day after the conference to hear the verdict on another lumpectomy. When I asked the Onc if he thought a BMX would be beneficial, he did not think so. Most of the meeting centered around treatment, which would definately include Chemo since I had one positive node, which I am fine with. Then -- radiation. He would to TC chemo on me -- a short cycle of 4x every 3 weeks. I will not be doing a port -- the Onc and the new fellow were very adamant that they are concerned about infection and since I'm only doing 4 treatments, they think they can manage. They actually had a Chemo nurse come in to look at my left arm and she thought it was doable. They will try it and in the event I need fluids or something else, we'll change course if need be. I'm fine with that.
I actually had to sign a waiver for the Oncotype test as they just can't 'order' it without your signature. He actually didn't think I needed to order it, because it's a given I was going to do chemo (at least for me it is), but he said he is curious to see what the score is, and so am I. He's right -- even if I didn't ask for it, having the Oncotype isn't going to change my opinion or my diagnosis on whether I was to do chemo or not. I have a positive node, I have vascular involvement present -- so for me, it's a no brainer --- I want the chemo to help my chances of getting rid of whatever may be in my body. (I pray this will be the case).
I guess for me, the main question that's nagging me is if I can live with another lumpectomy and not 'stress' over the cancer recurring in the affected breast (right side) or on the left, which is now fine. I heal VERY slowly and to go thru such a surgery is scary and I don't know if I'm ready for that now, so maybe I've answered my own question. Even with a BMX, the cancer could have traveled anywhere so would taking off my breasts really make a difference? Ugh, I hate these decisions.
But to be honest, another long surgery, with a month of recovery time is not appetizing. I want to get on with my treatment -- pronto. So, if I can do a re-excision in the next week or so, I can start chemo in 3 weeks. 0 -
I'll b e interested to see what the final decision is. I would think that rads should clear up any residual cancer in the affected breast though.
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Hi friends! Nice to have a thread just for us "noders". I was SO DISAPPOINTED when I found out this week that there was node involvement. But alas, that is the situation. I had a BMX on June 27th and I've got expanders in. Drains come out Monday. A shower is going to be the best thing since sliced bread. Feeling great...it's weird to feel good but know I have "the cancer." Hahahaha. Hope all you ladies are doing fab and here's to a great weekend!
Kasi
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Kasi,
sorry you have to join the stage II node positive group! You sound like you have a good attitude and that helps
. You will feel so much better when those drains are gone, so hang in there. Do you have your chemo plan yet?0 -
Thanks Christine! I try to have a good attitude as much as I can - but not always! Ha! All the little worries and what ifs creep in. I don't have my EXACT treatment plan yet. My onc said if nodes were clear and margins were clear I would probably just do 4 rounds of AC but nothing was definite since we didn't have the whole picture. Boy was I PRAYING for that. Margins did end up being clear so I guess I can be positive about that. I'm guessing 4 rounds of AC and 4 rounds of T. But a new wrench has been thrown into the plan. Biopsy path showed HER2- and surgical path showed HER2 equivocal. Awaiting final FISH results. I might end up being triple positive. How are you doing?
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Kasi..... I did SIX rounds of each (AC + T) as part of a treatment protocol study, and I am just fine.
Was really dragging towards the end of AC, but cycled anyway. Had a lot more energy with Taxol, even enough to do the short course of a cycling event.
I exercised every single day of chemo. I think that is the one major change. I was an exerciser prior to chemo, and even more discliplined now.
Off tomorrow to do the 204 miles of the Seattle-to-Portland which is this weekend. Good luck with your treatment. - Claire
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Awesome, Claire - so this is the big weekend! You will do great and I hope you have lots of fun!!! I am an avid exerciser and have no plans on stopping. Your words are so encouraging - thank you! Best of luck tomorrow!!!! 0
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Kasi,
You look so young in your picture. I am 47 and you can tell from my stats I was just er/pr+, I did 6 rounds of TAC, and I am doing great! I hated chemo, but it was very doable. The worst part for me was loosing my hair, I know that sounds crazy, but true. It is now growing back and I am getting ready for my exchange surgery next week. You will get lots of encouragement and good advise from all the ladies here. Keep your winning spirit and great attitude, we will all be here to cheer you on.
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Thank you so much for the compliment Christine - I am 31 so I will take it! I was definitely upset about losing my hair but now I am worried about chemo brain and neuropathy. I feel like I find something new to worry about every day and somewhat make peace with what I was worried about the day before. Congrats on the exchange surgery next week, that is SO AWESOME! I am so happy for you. It's gonna be great! 0
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I've always wondered why we get "chemo brain" if chemo doesn't cross the BBB.
I'm certain that I have it to a minor degree. But I wonder if itll pass as the stress of this situation passes.
I sure hope so!
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what's the BBB?
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BBB = Blood Brain Barrier
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Hi everybody, happy weekend!!!
Welcome Kasi, sorry you ended up with node involvement too though.
i had a false negative node test while on the operating table for my BMX so ending up with 1 positive node completely shocked me. I had no warning that sort of thing can even be a possibility to be incorrect?? Oh well....sigh
I go this wednesday for more surgery, my BS and my MO suggested an axilliary node dissection to determine if I need radiation or if it's just the one node.....I'm so scared that more are going to positive.... For some reason I'm more terrified of this surgery than my BMX???
I'm also having my port put in Wednesday too.....as chemo is definitely in my near future.....
Hope everyone has a great day!!!!!0 -
Madismommy719,
Your story is identical to mine. When I had my initial surgery they told me I was node negative (3 sentinal nodes where removed). Final pathology and I had one positive node! I went back and had axillary node disection and rest of nodes all negative!! They gave me option of not having additional surgery, but then I would need Rads ( I am satisfied that I did have this surgery as with Rads would have compromised my implants, etc). The axillary node disection was easy and I also had my port placed at the same time. I am having my port removed and implant exchange this week on Thursday, so I am one step ahead of you. I will be thinking of you, you will do great and I will also be sending good vibes for all negative nodes!!!
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Christine, so glad to hear that the axillary node dissection wasn't too bad....recovery wasn't horrible? No signs of lymphedema at all? That's another fear I have with this.....
Did you end up with a drain after the AND? I was told there's a good chance I'll need a drain again... I'm NOT looking forward to that. one of the worst parts the first couple days after my BMX.
YAY for your exchange this week!!!! Gives me so much hope that there are happy times ahead of me!!! Are you able to sleep anyway but on your back now?? I'm a side sleeper and being confined to my back only has also been brutal, and with the TEs I don't see side sleeping in my future for awhile....0 -
Pek,
I think it has to do with estrogen. Chemo stops/slows estrogen production and that affects the hormonal balance in the body, which in turn affects the brain which needs hormonal balance to operate properly.
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Madismommy719,
Good luck with your surgery on Wednesday. I had the false negative SNB, too, during my initial surgery and had to have AND later. The AND surgery was not bad, but I did need a drain. The shock of having a positive lymph node was worse than another surgery. Also, the BS put a port in my right shoulder area during that surgery since we knew I would need chemo. The BS sent visiting nurses to my home to help me with dressing changes, etc. He was able to remove the drain one week later during my post-surgery visit and all the other lymph nodes were negative. I hope your result will be the same.
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I asked why my SNB was initially negative in the OR then positive on post-op when I thought they examined it pretty thoroughly on-the-spot, and here is the answer I got: they basically cut it in half and if they do not see any evidence of cancer they wait for the post-op path and call it tentatively negative. My SNB had a 20-cell cluster so it would not have been able to be seen without the slice and dice. I did have AND and had an additional node with a much larger area of cancer (6mm) which happens in about 20% of cases. I was glad I had the AND because it removed all known cancer prior to chemo. I asked my BS last week about leaving a cancerous node in and the effect of chemo - he said in his experience chemo will take care of it about 60% of the time. That being said, do not discount the possible aftereffects of AND. If your surgeon is skilled (and you should ask their documented LE rate) their LE rate should be fairly low. My BS keeps a data base of all patient data over his surgical career and his LE rate is very low and he has 25 years of experience doing these procedures. He is conservative but will not do an AND unless he feels it is mandatory, he was not pushy about it but did strongly recommend it, and I could have refused it. Unfortunately, I am having issues with pain in the node arm that are nerve related. This does not appear to be LE. We will never know if it is from BMX or AND, but seems to fall into the category of post-mastectomy pain syndrome. This is my right arm and I am right handed and this damage may be permanent, but it is too soon to tell.
On the BBB thing - even though the majority of large molecule chemo drugs do not cross the blood brain barrier they affect so many other systems in the body negatively that work in conjunction with the brain, cognitive function is impaired in some people.
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Special K... making me wonder and worry... I have a negative diagnosis at first as well.. then full path said I had a micromet in SN, very very small.... my BS and MO said no further dissection due to risk of LE.. byt then had 6 tx of TC, 2 extra just in case... a second opinion BS said my risk of more nodes pre-chemo was 4-6% or something like that, so better odds after chemo... apparently, with micromets it is NOT the standard to take more nodes... of course after reading the last few posts, it makes me worry about metastisis... my BS and MO both had told me the odds of more positive nodes was less than 1% (different % from second opinion doc)... thoughts? Having a BMX in two weeks, no radiation.
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No matter how many nodes they take, there is still nodes in there that they didn't take and we can never be sure nothing is there. Doctors do the injections of dye to determine which nodes not to take in order to reduce the risk of LE ( Most do this I believe). These could be nodes with cancer. We don't know. It is basically a guessing game and that is why they do chemo. We can just never be sure.
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welll this is true... that makes me feel better.
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Please don't worry so much. I understand because I have been freaking out that I didn't have enough chemo for 3 months now!
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bdavis - definitely don't mean to worry you! You have researched extensively and those treating you feel that the choices made have been appropriate to your situation. Your mass is smaller and grade 2, and I am sure that has contributed to the treatment design. I think it was pretty unusual for me to have that larger node upon AND. The AND is the only difference in our treatment (other than Herceptin) as I am not having rads either. I have asked the rads question to both onc and BS within the last 2 weeks, at least to the axilla, and they both say not necessary. Good luck on your surgery, I will go in the day before you to have my left TE put back in, so will be thinking of you.
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SpecialK....I'm having this weird intense tingling feeling in my SNB "cancer" side since yesterday....last night I woke up at 1:30 am and was up until 5:00 dealing with it. I could not get comfortable at all.....I ended up putting my arm on a pillow on my bed tray over my body....UGH
It's tingling again right now and I have my AND this Wednesday.....im now terrified it's going to get worse after more surgery????? :0( does it ever get easier?
I agree that all of this seems to be a guessing game.....0 -
specialk... thanks for the reassurance... it is always a crap shoot in my opinion... but my 2 biggest concerns are 1) am I making the right decision about rads v MX and 2) am I at all at risk for not having rads to nodes and to a lesser extent my third concern is if any other nodes were positive... I have mostly convinced myself not to worry about it since it was only .38mmin the SN, but when I read about other people and their stories, I worry more.
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bdavis - these articles may interest you.
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1731
http://www.eurekalert.org/pub_releases/2011-06/mu-bc060211.php
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Bdavis....what amazes me is it seems like so many of us have almost identical Dx and yet our doctors all have different plans and such.....I definitely think we have to trust in our own individual doctors and our decisions made with the info given to us.....we can't live with second guessing all the time, we'll all go crazy!!!! And this whole thing has already made me crazy enough!!!!
My one wish is that NONE of us were enduring any of this and this was some kind of cooking/recipe forum instead!!!!!
Hang in there on your decisions....I think you are very well knowledged in all of it and making all the right choices for you!!!!! {{{hugs}}}0 -
So... you have the same diagnosis as me and are getting the dissection and had a BMX... no rads... and chemo?
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Ugh -- just reading all of this makes me nervous like Bdavis. My ONC said he would vote tomorrow at conference to "No AND" surgery. But, my mind goes crazy not knowing if any other nodes are positive and just 'sitting there'. I guess I'll know on Tuesday what they decide when I go see the BS.
Does the chemo get those cells if there are any other nodes positive, or is it just the radiation, if they do the underarm?
Ahhh!
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I am not sure standard of care has changed yet, but the research cited above showed how radiation can be an appropriate treatment for women with 1-3 involved nodes instead of ALND. Micromets is a different story, and as different studies show different things about their significance in terms of treatment/prognosis, doctors may take different approaches, depending on your pathology and planned treatment. They may suggest leaving it, leaving it to chemo, radiating, or doing surgery. The important thing is to ask lots of questions, challenge them even, and have them defend their recommendation. As this is a murky area, you may not get clearcut direction... do what feels right, ultimately it's up to you....as agonizing as that is... and don't look back.
Fwiw, I had 4 senitnels drawn, 1 with isolated cells, another with so many isolated cells the pathologist said it should be considered micromets, even though the cells weren't clumped. Being triple negative with a sizable tumour (actually 2), I knew I was doing chemo anyway... the question was, ALND or extra rads to the nodes? Research was just beginning to appear about radiation in place of ALND, but in the end I chose ALND because I wanted evidence if any additional nodes were affected (they weren't) - rather than trusting chemo and rads to do it. I've had no LE but I'm not sure I would make that same choice today - hard to say.
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