TRIPLE POSITIVE GROUP
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Oh thsnks Kb for the input of worms in my body--I think u'd enjoy thst. LOL But quite interesting actually.
Well that's going on the back burner for now anyway. I wsnt to take care of this heart thing andhave the lump on my ribs checked out first--Tho I am waiting til after the holidays about the lump business. hahaha
No one has heard from Pbrain since she told us she was in the hospital???
Lee My stupid question for the day---If 1 node was bad and the other 2 were good how many nodes would he want to take out. Oh this sounds like a stupid joke-riddle--I didn't mean for it to sound like that. But u know what I mean.
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Lee I had 10 nodes removed, level I nodes. This at the time was standard for tumors as large as mine. My BS pretty much thought I would have micromets (about 80% chance I would with a tumor as large as mine). I didn't. That was the good news. Unfortunately I do have minor LE and I didn't do any rads. Do check the new research. What others are telling you had been news that's been out there. Question your BS if this is really necessary and come in with the studies. I'm sure Tonlee might have the links.
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I just skimmed the pathology report the BS sent via email a few minutes ago. I had included the link to the Washington Post article kayb posted in my email to him as a postscript.
He wrote back the following (I don't see a problem in including this in my post):
There is validity to the study that you cited, but that study only enrolled women treated with lumpectomy and whole breast radiotherapy. The presumption that the whole breast radiation would controlled any microscopic residual disease remaining in the axilla. Since women treated with mastectomy do not routinely require whole breast radiation, the conclusions of the study do no apply. However, a study of mastectomy patients will be forthcoming in the next few years.
camillegal - I'm just looking at the path report again - I wish I could copy and paste parts of it.
Here's how one part of it reads. I'm assuming (?) this means that two of the nodes removed were sentinel nodes and the third one was not considered a sentinel node. Reading further in the report yes, that appears to be the case.
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Sentinel lymph node #1 - left axilla
---Micrometastasis present - (1/1)
Sentinel lymph node #2 - left axilla
---One benign lymph node - (0/1)
Left axilla palpable lymph node:
---One benign lymph node - (0/1)
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Size of tumor (invasive) - 2.5 cm
Margins of resection - negative
Closest margin - all margins 10mm or more
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Lymphatic invastion: not seen
Skin involvement: not present
Nipple involvement: not present (this really shocks me)
Microcalcifications: not present within the tumor
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Heap, I have had no nuelastin. I have no idea why...
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lago, interestingly (or coincidentally) enough - I was on page 131 of this thread about the time the doctor called.
On page 131 Jenn has just found out more about her tumor and she and TonLee have a discussion about the axilla surgery.
http://community.breastcancer.org/topic_post?forum_id=80&id=764183&page=131
lago, Thank goodness your nodes were all negative! I was thinking about you earlier today and wondering about how they take your blood pressure (right nodes were taken out as well, correct?). I know you can have blood drawn from your foot but wasn't sure how they take your BP. I've been told I'll always have to have BP taken on the right...
As always, thanks so much for the input from everyone. It is so helpful. I don't know what I would do without you all and without this thread! Seriously!
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PBrain, are you still hospitalized? Have you asked your onc about the Neulasta?
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Pbrain - some people don't need Neulasta. My MO did not give it after the first TX, but if your counts go to low, or don't rebound like they should, then he gives it for the following TX. If I were you I'd ask your MO why he wants to change protocol, rather than give you the neulasta? My counts always came back up to the normal range, or almost normal range before next TX, so I didn't ever have to have it, but a lot of others do have it. It's one of those everybody is different things.
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kayb - Thank you for that link in the Washington Post. I have bookmarked it to talk to my BS.
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pbrain, glad to hear from you. NCCN guidelines do not recommend Neulasta or Neupogen with TCH standardly b/c the incidence of neutropenic fever is not high enough (risk I think has to be over 20%). This is in contrast to AC, which they do recommend Neulasta/Neupogen with, b/c it has a higher incidence of neutropenic fever.
So, not all oncs will give the injections with TCH unless you develop neutropenic fever and/or your counts drop significantly low on the first round. I too do not understand why he would change your regimen - you should be able to continue with TCH with the addition of the injections to keep your counts up and keep you out of the hospital.
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Thanks lee for sharing that report I get a little better understanding about it. And BTW they take my b/p on my leg--can't use either arm for anything so I kept my port.
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leeA thanks so much for asking your PS, your are such a sweetheart to do that for your fellow BCO sistah! sorry ive been off the boards for a day...just trying to give myself a break. I send an email to my nurse today asking if there was any way I could go direct to implant using alloderm. That would eliminate the expander process and give me a soft implant to start out with. The reason i did not do it in the beginning was that this is only under clinical trial here and I would have to be randomized plus he said it would not work on my rads side. I told them i would be willing to pay out of pocket for the alloderm. I don't know if this is less or more painful, i need to do some research.
As for being small, yes im petite, 5' 1.5" (yes that half an inch is important!) and about 120-125lbs but i don't think that is tiny? they did a skin sparring msx so i have ample skin to grow into, seems my pecs are the issue. I feel a bit better today, more burning and heaviness then anything else -uggghh i thought this would be the better xmas since last yr i had just finished chemo
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pbrain - Are you home now?
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Lee,
I STRONGLY encourage you to get a second opinion on an axilla dissection.
Standards have changed in the last few years and women with even one positive lymph node are getting rads to the axilla. The latest research shows improved survival and less chance of LE if the nodes are left in place and nuked.
So my first question would be....am I having rads?? (You will have to see a RO for this to be sure.) If you're having rads, ripping out your axilla is OVER KILL in the absence of "Gross disease."
Frankly just reading this pisses me off. 1 out of 3 nodes. How many nodes does he want to take?
And I am COMPLETELY baffled by this:
The presumption that the whole breast radiation would controlled any microscopic residual disease remaining in the axilla. Since women treated with mastectomy do not routinely require whole breast radiation, the conclusions of the study do no apply. However, a study of mastectomy patients will be forthcoming in the next few years.
First of all, it is absolutely acceptable to extrapolate this study to women with MX. Why? Because whole breast radiation is NOT AXILLA RADIATION! Axilla radiation is it's own tx. There are women in my own Cancer center who get rads ONLY to the axilla (after MX) with pos nodes!!
If a woman has a lumpectomy and rads, but doesn't have positive nodes, she doesn't have to get rads to the axilla. For radiation to hit the axilla it has to be programed into the machine and the machine moves into an entirely different position to hit that part of your body.
PLEASE PLEASE PLEASE get a second opinion. And go see an RO too. Right away. Since you have a micromet they may not recommend rads. But if they do, ripping out more nodes and then radiating on top of it is WAY overkill imo.
Gah, I can't believe there are still surgeons out there ripping out axillas when 2 of 3 were clear.
EDITED TO ADD: I know the study your Onc is talking about that suggest women with lump/rads will often get some benefit to the axilla from whole chest rads. But it is hit and miss. Depends on the body type of the woman, the RO's field, etc. Which is why we get axilla specific rads with positive nodes.
So find out FIRST if you are getting rads...your onc can't really tell you...he will, but an RO can say the opposite. (Mine did.)
With the risk of LE, PLEASE get a second opinion.
Here's the study that says axilla "may" be hit in lumpectomies, but it's really a crap shoot unless specifically targeted.
http://jco.ascopubs.org/content/29/34/4479.full
THE MOST IMPORTANT PART!
In conclusion, on the basis of the results of Z0011, a significant proportion of patients with one to two positive SLNs and BCS can safely forego ALND. The majority of these patients do not need to be subjected to the short-term and long-term morbidity of ALND. The multidisciplinary approach of adjuvant systemic therapy and WBRT is important in reducing the risk of locoregional recurrences.
If you're getting rads...there is no reason to rip them out.
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My doctors (BS, MO, and RO) all agree with TonLee. I had 1 out of 2 positive nodes. My BS told me that he did not recommend removing any more nodes because of all of the latest research. He said many doctors are still practicing the old ways and that I might encounter resistance. The tumor board agreed - leave the rest. I had a UMX after two unsuccessful attempts at the lumpectomy (didn't get clear margins). I had chemo and now I am having radiation. My RO is adamant that the survival benefit is quite strong for those of us who had a mastectomy with 1-3 positive nodes.
I believe this is the link to the big study: link Over 10,000 patients. Conclusion: Patients with intermediate risk breast cancer who received PMRT have improved OS compared to those who did not receive PMRT. For patients with ER positive tumors, PMRT also appears to be associated with improved CSS. Greater consideration for post-mastectomy radiation therapy use may be warranted for this patient population.
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TonLee, thanks so much for your post. I just took a screenshot of it and sent it to my husband (he's across the house - not town, or the country but easier to email back and forth).
My initial concern is the delay in chemo while waiting for yet another surgery recovery. I'm not anxious to start chemo but I'm ready to get that herceptin into my system (if possible - all depending, of course, on the oncologist). I feel like it's time for the oncologist to become the point man in all this.
Also, I was thinking of Jenn (Pensacola Jenn) and her post about the neo-adjuvant chemo and IIRC, the neoadjuvant chemo shrunk any cancer cells in ther nodes to zero (I need to go back and find her posts).
I most certainly do not want to have an axillary node dissection AND radiation on top of it all!
And I'm trying to stay positive in that the one node with the 1mm micromet was removed. The other sentinel node was negative. I am assuming the sentinel nodes are the ones closest to the tumor within the actual breast. From reading the path report I'm assuming the axilla node was just that - an axilla node in a different location (more of less) than the sentinel node. When I asked him he said he didn't know which ones were which but upon reading the report it seems clear to me that there were two sentinels that came out and one axilla. I don't think it would have been worded the way it was if it was anything different than just that.
Again, THANKS for your input.
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PLEASE get a second opinion LeeA if he recommends axilla dissection.
Please.
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vballmom, thanks for your post as well!
Is the tumor board affiliated with your hospital?
I have my first appointment with the oncologist on Monday. The BS wanted me to see his oncologist but the location just isn't practical for a year-long course of treatment - not to mention a lifelong relationship (that's the impression I get about the patient/onc relationship). He (the BS) has definitely been in charge up until now...
Fortunately, I've been able to get an appointment with this oncologist who is the medical director of a facility closer to home. He has a closed practice but thank goodness, someone (a near angel!) came to my aid and I am forever grateful to her for getting me through the "gatekeeper." This particular facility is a cancer center and the treatments and cases are all coordinated there. The same is true at my BS's center but it's just too far away for the chemo part.
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TonLee, I will definitely get a second opinion.
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Good LeeA,
I am going on vacation for a week or so....
Stay strong and make them back up recommendations with the latest studies! lol
Peace.
Tonya
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PBrain, I hope you're starting to feel better and on the mend.
Welcome newcomers. This is a great thread for us triple + with an incredible amount of information.
Ladies: Thanks for replying to my post. I'll definitely be researching it more before I make my final decision, yes. I was on clomid also while trying to concieve. Nasty little drugs those harmones are, at the time, and years later.
Happy weekend everyone.
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I concur - get another opinion. When I was diagnosed if you had less than 3 nodes involved then radiation with mx wasn't even mandatory, now the studies are finding benefit for this. I had 5 very positive nodes (no micro-mets) so had Axillary Dissection (because of my biopsy pathology the BS thought I would have a lot more lymph involvement) and rads to whole breast area, axilla & clavicle. My margins were clear, but were closer than the surgeon liked in a couple of areas. I didn't develop LE until after radiation! It just doesn't make sense what your doc is saying. Also, I've seen many women on these boards that have had 4/4 nodes involved, but more were not removed.
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rozem -
I just read this on the November surgeries thread and immediately thought of you:
"Getting the TEs out is marvelous. I feel so light-no more bricks sitting on my chest. Since I don't hurt like I did when the TEs were in."
Regarding your size - everyone is built so different. I tend to be broader in the shoulders/chest and more narrow in the hips. Some women are very petite on top (slender arms, narrower rib cages, etc.). I am definitely not one of those women.Also, these tissue expanders look and feel so bulky compared to the actual implants (that is, when I looked at them/held them in the office).
I hope it all works out for you and you finally get to a less painful place in all this. I continue to wonder if the arnica might work for you. Also, you mentioned pain in the pecs . . . that's where most of my pain is but I attribute that to the drains. I have no idea how all these fits in there - i.e. drains, tissue expanders, etc. but I do know that when they pulled out the drainage tubes (2 of 4) yesterday i was shocked by how long the internal part of the hose ended up being. I wonder if the drains might have bruised/aggravated your pec area? I'm sure your drains are long gone but I could definitely feel a snaky, weird feeling yesterday when they pulled out the one on the right.
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Linda, I guess a micromet is worse than a positive node, right?
(the roller coaster ride continues)
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Excuse my ignorance, but what is the difference between a micromet and a positive node? I always thought they were the same thing.
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I just found that answer on this thread.
http://community.breastcancer.org/forum/71/topic/764770?page=2
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I think that a micro met, is just a small spot of cancer, my 5 nodes were full of cancer, not just a few small spots. I'll try to find the pathology on mine so that I can give you the full verbiage, but it said they were deformed, discolored and full of cancer, basically, that they could tell they were cancerous by looking at them - with a micro met they had to view them under a microscope to find the cancer. Make sense? If any of you know anything different, please let me know!
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LeeA- surgeons are often all to eager to cut. They are so entires the first ones we encounter as breast cancer patients. As a nurse, I should have known better on a lot of things, but it all flew out the window when I heard breast cancer and became a patient. And I have learned to listen to the ladies here. They are are top of things much more than many surgeons. If I had to do it over, I would tell my surgeon no. After all, it is our decision, not theirs.
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Makes sense Linda, thanks. I had one micromet and one macromet. Hence the radiation...RO was adamant about that.
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Pbrain- I agree, I don't understand why he's changing you treatment instead of adding Nuelastra. ?? And as far as the nausea and vomiting, Emmend should help that. Idk, questions to ask? Seems you may be able to give it another go given the right premeds and post meds?
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LeeA - Just to chime in with everyone else, I agree with the other ladies on getting a second opinion.
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