Stage II w/Lymph Node Involvement
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Same happened to me....negative at surgery and 5 days later final path came back positive for 1 node and after BMX turned out to be three
BOO HISS! 0 -
Loving this thread BTW:)
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My one node was positive from beginning...like KCMomx3--BOO HISS. Once the final pathology is in--that seems to be what determines course of treatment. Talk to the Docs--get them to answer all your questions--then you will feel comfortable with course of treatment. Chemo sucks but is completely doable
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Everyone says how Chemo sucks but for some reason I'm way more terrified of radiation??? Especially now that I have my TE's, I also read that rads will change the final outcome of reconstruction w/ TE's. I tell ya, the lack of information and not knowing never ends does it? Everyday seems to open whole new chapters and doors.....
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Madismommy... I too was told that mine was negative and then with final path report I was told I had a micromet (.38mm) A micromet vs macromet is based on size... a micromet is anything between .2mm and 2mm and a macromet is larger than 2mm up to I don;t know... and anything under .2mm is considered node negative. There are studies that say with micromets, further node dissection is not the standard... with your macromet, I am not sure... but radiation after MX is usually only recommended if you have at least 3-4 positive nodes... but chemo is very likely. I had chemo (6tx of TC) and am fine... I did choose to forgo radiation and get a MX instead (I had a lumpectomy initially)
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Bdavis - so maybe that's pretty common to be surprised with the final path report?? Mine are measured in cm on my path, report, could that be a typo on their end?
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Yes probably.. if they said micromet and macromet, that would be in mm not cm
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Madismommy-The constant changing treatment plans does stink but ultimately, you want to know that you made the best decisions possible based on all the final information. What BDavis said about lymph nodes used to be true but there was a new study presented at the ASCO meeting in June that showed benefits of radiation for women who had 1-3 positive nodes. Here is a link to a review of the studay:
http://www.medscape.com/viewarticle/743992
http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=35398
The second study presented previously comparing women with 1-3 positive nodes and mastomy and women who had lumpectomy and radiation. This study showed decreased recurrances in the lumpectomy and radiation group. Some RO's recommend radiation for 1-3 positive nodes based on the results of these studies.
Your RO may be basing her recommendations on these fairly new studies.My RO sat down with me and told me specifically what % decrease recurrance benefit I would get from radiation in each area breast, axillary nodes, and supraclavicular nodes. It really helped me to understand her recommendations.
I understand your concern about radiation and TE's. Some women do fine and others have problems. My RO said that increasing blood flow to that area is important to decrease risk of complications. She recommended kick boxing and swimming (as long as your skin is ok) before, during and after radiation.
What's most important is that you are comfortable with your final decisions.
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Too much- thanks for the link!!
I wish I could stop my brain from analyzing everything non stop 24/7, that would help me so much! I'm one of those people that can worry myself into having something wrong. Most recently since my path report I've almost convinced myself I have a brain mets because I have a headache. Ugh. Not a big headache, and probably b/c I'm barely sleeping but I'm so paranoid at this point. I've had every test under the sun so I doubt it could even be a possibility but try telling my crazy mind. Am I the only paranoid one out there? I just feel like every time I accept and deal with what I'm facing I keep getting thrown curve balls....0 -
Madismommy-just reread your post and noticed the comment on axillary node dissection, AND increases your risk of lymphedema, as does axillary radiation. You should talk to your RO about AND. A study was published sometime this year that showed no benefit of AND if axillary radiation is to be given anyway. I'm sorry I can't find the link to this one. I clearly remember wishing that information had been available before I had my AND. Since my sentinal node had extracapsular extension, I knew I was going to have axillary radiation from the start.
It hasn't even been 2 months since your were diagnosed. It's normal to be worried about everything. I was still taking Ambien to help me sleep 2 months after diagnosis. Without it I would have been up worrying and creating all kinds of horrific scenerios in my mind. Somehow, with time, it all gets easier. Wishing you peaceful nights.
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I am worried about the TE's and rads too. I am in radiation now. I only got my TEs half way filled and then had to start radiation. Both the RO and the PS said that we could continue the fills after radiation and everything will be fine, but I've heard that it is difficult after rads to expand.
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Madis when I read your earlier post I saw that you put a decimal point in front of the cm measurement for the micromet and macromet. There was no mistake in the report. 0.1cm = 1mm. 0.5cm = 5mm.
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Thanks Kathy, so that makes a lot more sense except I'm not liking that macro met !!! Aren't they the ones that could wreak the most havoc?? I'm telling ya, all this info is so overwhelming. Does it ever get simpler?
Oh, and regarding the possible AND, my oncologist I see this week told me to cancel any surgery plans for AND until I meet with her first. not sure if that's good or bad????0 -
toomuch... I was having trouble viewing your links... I just want to understand the newest findings (these changes drive me crazy).... I had one micromet and the plan was to have lump and then radiation... I have chosen MX instead of Rads and asked MANY times to my MO if the radiation was in any way better (in my case) over MX regarding recurrance. Clearly removing the tissue would be better than radiation for the recurrance risk in the breast, but my concern was the clavicle, breast bone and nodal area... I said that if I have the MX and NO radiation was I increasing my risk at all... He said no; that with my MICROMET only and 6tx of TC, with MX I was good and the RO and 2 BS agreed... I think had I had more nodes or even more cancer in the one node, that answer may have been different... Based on that detail, how does that compare to the latest findings?
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Madis.....First of all, you will feel better when you have a treatment plan. Then you do it, and don't look back. One thing all of need to recognize is that we made the best decision we could based on the current state of the science.
Progress means that something could change very soon. However, this does not mean that your decision wasn't the right one. It means there is progress.
In terms of the headache/brain mets worry. You have to ask yourself which is the more likely??? I think you would say "headache", particularly if you haven't been sleeping well.
Similar story: I had a severe pain in my left side for about three months, or it was severe when I coughed. I knew what it was....a pulled lower pectoral.....as had a similar, but much milder soreness in my right side. I got these after skiing through thick, heavy powder for 10 miles on my x-country skis. But your mind does go to mets.
You will do this again. We all do.
Or I see some puffiness in my left wrist and I wonder "lymphedema?" Then I look at my other wrist and both ankles. They are also swollen. Most likely "long bike ride".
Good luck. Just listen to your oncology team. That is why they are there. - Claire
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toomuch & bdavis, Not sure if this is the study being referred to.http://www.medscape.com/viewarticle/723308 It is partly what I based my decision on to have RADS vs ALND. The surgeon & the RO both thought it would give me a lesser chance of LE. The MO wanted me to have the ALND. The study was on women recieving lumpectomies but BS & RO thought they could extrapolate & apply it to me, having had BMX. It was explained to me that women with lumpectomies recieve radiation to the armpit also. This is thought to treat the nodes in this area adequately. I could have had a lumpectomy to my breast with the poitive nodes. It was smaller & seemed less invasive. My tumor on the other side didn't lend it's self to lumpectomy.
In this study they found that women who had a lumpectomy followed by RAD did slightly better than those who had ALND. I was clearly told that this difference is "not statistically" significant. So, both treatments are believed to be of equal value by some.
Bdavis, I think a "micromet" maybe too small to be considered positive node in this scenario. Women who have lumpectomies get RADs even if the nodes are negative & the axilla is radiated in the process. & those with MX don't usually. More confusion & questions for sure.
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That is a helpful perspective Claire. I will not anticipate what might not happen. Not knowing the plan for the malignant node is nagging me. I'll know after Wed. when I read the DX.
thanks,
nancy
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CoraleLiz-The 2nd link in my post was to the study you talk about in your post.
BDavis - Sorry about the link issue. The first link is to medscape and I forgot that you have to be registered to see it. If you look under Research on breastcancer.org, in the radiation section, you can see their reference to the article. There is no mention of micromets in either article. It's my understanding that researchers are still unsure of the significance of micromets. I do believe that patients with micromets are grouped with the node negative group.
There was another study out of MD Anderson last year that concluded that women who had 1 positive node (and I don't think your node would be considered positive) and mastectomies had no increased risk of recurrance then women with 0 positive nodes. I don't know if the link will work but if you google radiation post mastectomy 1-3 positive nodes it will come up.
http://www.cancernews.com/data/Article/768.asp
Claire-I agree with what you said about progress. Thankfully, the research is ongoing and treatment recommendations are constantly changing. I agree that we just have to make the best decisions that we can based on what is known at the time. We can't regret what wasn't known at the time.
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Yes... this article is consistent with all I have read... that women with one positive node who have MX do not need radiation and have little if any benefit... But if you have a lumpectomy, radiation is a big component for not getting a recurrance regardless of nodal involvement... For me, my concern was if I get the MX which was clearly the best way to protect myself from recurrance locally, I was concerned about recurrance regionally (in nodes, chest wall and clavicle) but all doctors I met with (except maybe RO) said that chemo would have killed the rogue cancers cells... One little caveat.. I had lumpectomy, then chemo then I will have MX... for those who have MX first, then chemo, the RO I met with said chemo is not effective on scarred tissue, so with all the scarring from a MX, the chemo won't kill the local cancer cells if they are present... I felt that this didn't really apply to me since all I had had before chemo was a lumpectomy...
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Bdavis -- I had two lumpectomies, then chemo, then MX. When the tissue was examined post-MX there was no evidence of disease left and I had a lot of tissue so even with a skin-sparing MX the scar tissue was removed post-chemo. That's interesting about the scar tissue... I had not heard that. I also did not have to have radiation due to the MX. There are some women who are HER2+ who are advised to have radiation even with MX but these are usually women with 4 nodes or more (although I do know of a few HER2+ who were advised to have radiation with only a few nodes positive). I think sometimes the recommendations vary.
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Well... I will have my MX in July (3.5 weeks from now) and hope after the lumpectomy and chemo that my MX path report is an all clear... I have said that if they find something else lurking, it for sure justifies my decision, but of course, I am hoping they find nothing... and I don't need justification.. I am sooo good with clean tissue.
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I hope they find nothing left Betsy. I had somewhat mixed feelings when I heard... wondering if I should have not had the MX (the second lumpectomy had clear margins on three sides and one that was close). But the wondering was VERY short lived. I much prefer clean tissue as well. And it made me feel glad; that I had done all that I could and it was gone.
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Hi ! I am newly diagnosed 5/17/11 with BMX with TE 6/17/11. I just received my path reports yesterday and had good news and bad news. Good news altho the sentinel node was positive all other nodes were negative, the bad news I have a microinvasion in the chest wall arising in the background of extensive DCIS. I had DCIS in 2 areas and IDC (2.5cm mass) in the left breast, the right breast was sacrificed for my piece of mind... I had hoped the cancer was gone and I would not have to undergo further tratment, but now the waiting game is on again waiting for MO and RO appointments to find out what follow up treatment I will need. I am concerned about needing radiation and having bil TE inplace. Stage IIb Grade 1 ER/PR+ Her2 neg
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Aw Debb -- sorry about the chest wall. If you do need radiation and already have the TEs that might be OK. I have read that expansion before radiation may be better (to avoid issues with rads skin). Consult your PS about this... also I suggest searching here re: TEs and radiated skin. I've seen articles posted here over the past few years that discuss best changes for TEs and radiated skin.
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Hi Debb... You will probably get chemo but may not need radiation... One positive node usually doesn't lead to radiation, but I am unsure about radiation and microinvasions... chemo is probably the best combatant for that I think... Don't worry about anything... I am sure your Mo and RO will give you lots of information... and you can also always go for a second opinion. I think that when a situation is gray, hearing multiple opinions helps... Some cases are clear cut and others not so much.
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hi -
I'm new to breastcancer.org. I have stage IIA with sentinal node, had a lumpectomy and had my first chemo two weeks ago. My next chemo is a week from now, I have 2 more after that and then 6 weeks radiation. I'm ok with what I'm facing but am a little bummed tonight as my hair has been coming out like crazy for 4 days now
I thought I could handle the hair but..... 0 -
I did 2 lumpectomies, chemo, mastectomy. My mastectomy came out clean and I thought it was great to learn that the chemo worked. I'm now doing radiation because of lymphatic invasion and dermal lymphatic invasion. I only had 1 positive node.
debb: I had tissue a expanders= put in at the MX. I couldn't finish filling prior to radiation but I got half way. They assure me that we will be able to finish after radiation. They said I will have to wait 2 months and then fill a little slower.
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ouch - where your lumpectomies done at the same time or later?
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"were"
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Mamma -- sorry you needed the radiation even with the MX. I was told an MX would mean no radiation which partially contributed to my decision to go for that (after the two lumpectomies) instead of one more lumpectomy and onco-plastic surgery.
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