the neoadjuvant staging dilemma
Comments
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I guess staging is up in the air anyway bc on some web pages ur stage 3 if ur nodes r clumped together while on others they say 4 or more regardless of how they look.. I know a girl who had 6 positive nodes. Tumor between 2 and 5 cm and she was staged at 2 even though more than 4... So I don't know bc on this site they say ,I believe it's stage 3 , if over 5cm and or nodes r sticking together or more macroscopic involvement in the nodes.. I agree wth u on how can they really stage me though they staged me at 2 but we don't know how many nodes r inolved or were so how accurate is the staging they gave me? I will go with what everything is like after chemo.. I think imaging can show how nodes look to a degree.. And also if nodes show on pet/ct scan which they sometimes do, would infer more gross node involvement but I don't know . I hate breast cancer..
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I was thinking more today about my infra- or intramammary node and wondering if the reason that they weren't radiated is that they were removed along with the breast during mastectomy. I have an appointment with the surgeon coming up, and I will ask her. All I know now is that it lit up in the past and is not lighting up now or maybe is not there at all.
Does anyone else have trouble getting their docs to go into depth with them about these things? Unless I ask, I don't find out sometimes. I also don't know if I had lymph nodes clumping together--only that they were extracapsulated. -
Was always under the impression if they r clumped together it shows up on imaging... Does the extracapsulayed show up on imaging or only when they go in there and look
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Shari, I think it is a bit of a crap shoot what shows and what doesn't. I had one extra-capsular node and 6 others with cancer. That was after chemo, so there may have been more for all I know.
At DX they gave me every scan known to mankind - US, mammo, MRI, CT. They could feel 2 nodes being enlarged, but no nodes showed on any of the scans. At surgery it turned out that the biggest of the 2 enlarged nodes they had felt did, in fact, NOT have cancer. The cancer was in nodes they could not feel.
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I guess it it a bit of a crapshoot, doesn't make me feel any better...but I guess it is...
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Shari, at first it freaked me completely. Probably like many other people, I thought that those fancy scans were almost like magic. They are not. They are very useful, but they can miss stuff.
I also get a scan of my bones to check for bone cancer. I had the second one back in October, first one at DX. On both reports it said something about radioactive uptake (supposedly what shows the cancer) on some sort of seam. I didn't know the anatomical term in Greek, nor did my husband, so I finally asked the doc what that was all about and should I worry. He said that it was the seam between the bones of my skull at the top, and not to worry. So I asked, of course, why the heck he was so laid back about it. He answered that it hadn't changed since last year, but besides, that was just not a very common place for bone mets.
It is much more like an art than like an exact science. After I got over freaking, it actually made me feel a little better somehow. If I can't know things for sure anyway, there really is no reason at all to stress over them.
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It's just the more I find out the more I freak.. Like the hits keep coming...I haven't had my surgery yet , so all I know is I had one node positve for cancer..l not sure of details.. Want enlarged but now I see it doesn't have to be... Radiologist said it looked a little funny so we tested it and it comes back positive.. Don't know how many others.. They made it seem like microscopic involvement but how do they really know if they haven't gone in there... Am hoping after chemo they will all b negative but I guess we don't know extent of cancer In the nodes I n the first place. Now it seems I shouldn't get my hopes up....
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I'm surprised too, how many cases of undetected cancer cells I've come across during my reading... That is undetected despite conventional diagnostic methods! Is breast cancer actually a dissiminated disease in the majority of patients? Is staging in some cases more scary than informational?
I'm convinced it takes a lifestyle change of some sort - or else any remaining cancer cells still thrive in a bad environment OR new cancer cells have the best opportunities to stay alive. The link between oxygen deprivation - alkaline food - cancer - glucose - insulin levels just becomes more and more clear to me. It seems however that a sufficient change must be made in time. It takes time to reverse the situation, which also becomes more serious with time.If chemo reduces the tumor by fraction - well then chemo alone can't eradicate the tumor. Cancer cells are almost bound to be left behind, right? Even after surgery this seems to be true - given the high numbers of distant cancer cells (take for instance the article I referred to earlier which found cancer in bonemarrow of half of all participants).
The sad paradox is also that radiotherapy and chemotherapy is less efficient the more advanced the cancer cells have become (the more acidic the environment, the less oxygenated the tissue) - and these treatments sets back the immunesystem which we rely so much on afterwards.
I'm still not convinced one should skip conventional treatment but it certainly can't stand alone.
Momine- I agree with you regarding the part about not stressing when we don't know anything anyway! It takes some practising though and I won't be able to NOT do it until I'm convinced I've found the right lifestyle tactics. -
New, it is hard finding the balance, and it will be different for each individual. In the beginning I looked at every supplement and holsitic treatment out there. After much reading, it seemed to me that most supplements have both good and bad, and that the key changes had to do with diet and exercise.
I am fairly convinced that the more you can exercise, the better it is. I am also convinced that it is important to keep your blood sugar even, as far as possible. My fasting glucose was highish at DX and has remained so. The docs insist it is irrelevant because it is still in normal range (barely), but I beg to differ. We have no family history of diabetes, and those who did develop type 2 did so in ancient old age, like 85+.
Keeping glucose steady means eating at set meal times and eating well. Nothing dramatic, but lots of veggies, low-glycemic starches etc.
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Got the pathology report. There was pCR (only in situ left) in the breast but one of 11 lymphnodes contained macrometastasis which was extracapsulary. Kind of relates to my worries; it seemed only Taxotere caused pain in the axillary region. Either it's a different cell type that has spread there or else is it possible the vascularity of the area was impaired after SN dissection making it harder for the chemo to work there?
I asked about the cell charecteristics but they had not tested for that! To me it seems likely it's a diffent cell type than the original breast cancer cell... The actual size wasn't even mentioned. Only that it was macro.
Don't exactly know what to think about this. I still feel like I need more information to know if this is good or bad.
Momine: has your exercising and eating habits not affected the blood glucose level in a positive way? (or did you do "the right thing" from the beginning?) I've not looked much into it, but remember someone mentioning Metformin on the boards. Do you know anything about that? -
New, I am not sure how to interpret your path report either, although it sounds quite positive.
My fasting sugar continues to be high (95-100). I just had blood work done today, so tomorrow I will know how it is at the moment. When I tested 3 months ago, it hadn't really budged much, but I don't know how long the diet/exercise has to be kept up to make a difference. I also asked them to do the A1c test, which gives you a reading of average blood sugar the last 3 months.
If it still hasn't budged this time around, I do plan to ask again about metformin.
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I don't know that either but would expect it to be affected rather quickly? just found this link: http://www.bodyandsoul.com.au/food+diet/expert+opinion/control+blood+sugar+levels+with+food,7489
I feel as if they don't "do enough". Why are there so few information regarding ER %, sizing - they say this is the definite truth - imaging can't be relied on - why the F don't they do some more testing then?
I need to get my vit D and blood sugar levels checked as well. Am kind of disappointed but know those things wouldn't have changed the fact that there are remaining disease. Perhaps it all comes down to being scared about what this means prognostically
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Whatever it means prognostically it doesn't mean it's going to happen right? It's just a prognosis.. And u still have hormone medicine in ur arsenal..
But That's why I say I am scared for my path report... What it will mean prognostically... But what is a prognosis, is just that , a prognosis... And for u, it was only found in one node.. So that is good too? -
thanks shari. thought I had prepared mentally also thought I had told myself enough times not to let this get to me but I guess it takes a robot not to be a bit affected. You are right about these things. There are still chances. I have to ask some questions to the oncologist - this was the bs who said he didn't know why they hadn't tested more.
Do you know what? I even knew it would be highly unlikely. Being "luminal B" ER/PR pos and high grade. We must focus on the antihormonal option as well. However it works best with luminal A. We must also find other ways to prevent it as much as possible!
Im having a day where Im fed up with cancer. Can really relate to what you wrote some place earlier. Prognosis, facts, response, treatment, plans. The new and better lifestyle also has to do with not obsessing about this. Let it be. But I really still need to find a good combined plan first - diet, exercise, mentally etc. -
Newdirection and Shari - As someone who was going through the exact same thing you are last year at this exact time, I can't impress upon you enough that one day........(yes, one day in the next several months) your cancer diagnosis will not even cross your mind during the day. Your personalities are like mine, I need to know, I want to make sure I've researched everything, blah, blah, blah.
I spent a few months away from the BCO board and I had truly forgot, moved on, was living my life away from "Cancerland". Then I had a change in my anti-hormonal treatment and I found myself back on researching a few weeks ago, which isn't necessarily a good thing (for me). Now, not only am I questioning my antihormonal treatment, I'm questioning my entire treatment over again!!! What good does that do for me, at this point?
I do feel for the both of you and I know exactly how you feel. That is the great thing about these boards.....we have somewhere to go where we feel accepted and not only can we find answers to our questions, but we feel supported.
I came to the realization that I truly have no control....even though I thought I did. At some point, I have to move on, trust my team of doctors and despite all my best efforts with diet/exercise, supplements, researching, educating myself, cancer has a "mind" of its own and some of us will succumb to the disease. I just hope and pray that I will live many years before this beast rears it ugly head again....UGH! In the meantime, I've got to go "live my life" as my oncologist told me! ((SIGH))
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It's hard to think things will get back to normal.. And knowing things doesn't alway help.. Just makes me worry more... I worried bc I read if there r still positive nodes after chemo, it changes prognosis.. N still worry what will b but I realize I cannot do that to myself bc like wildrurama said isn't it really a crapshoot anyway..and like is said.. That prognosis does not mean everybody it's just a prognosis...and really can't live worrying have to just live...
New direction, I never read about hormonalscworking better with luminal a only, I thought it was for all er/pr positivity, independent of grade? -
I used to imagine myself growing old... I just can't do that anymore ... I feel like my time is limited here and it sucks. Going to go take a Xanax.
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wildrumara and shari thanks for sharing. It's nice to know I'm not the only one feeling this way. Because thats actually how it feels most of the time. Entirely alone with this feeling!
I could easily end up obsessing too much but yes youre right - why try gain control of something we can't control. I must stay away as well on off.
Shari sorry to just fuel the fire even more, but if you want to read about it it's here http://breast-cancer-research.com/content/13/6/221.
http://jco.ascopubs.org/content/30/15/1747.full - although Luminal B her2-neg is not discussed I don't know if the findings of Luminal B her2 pos could account for us as well. It seems pCR is only prognostic for the triple neg group...
I dont know if it adds to the concerns but actually our risk of relapse is low if we pass the 5 year mark. Thats nice to know when we get there.I think Ill take a cancer free day tomorrow. Goodnight.
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And we will get there! I must say these articles are informative but I do find myself not always understanding everything they say.... So was her 2- neg luminal b accounted for or not.... And doesn't er positivity vary from individual ... There can be high grade highly er postive cancers too.. I feel High er positivity doesn't only go with low grade tumors? Am I correct?
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yes yes I haven't completely logged off yet. Shari Luminal A is the lower grade ER/PR pos, her neg. No, luminal B her 2 neg wasnt mentioned, they must not have had enough information about these. I do think however their prognosis to be honest is related to how great a response you get (from what ive found the last 30 minutes...). If youre interested its here: http://www.uscap.org/site~/99th/pdf/companion11h02.pdf - they have a link where the residual cancer burden can be calculated. I dont actually know what we want to know this for - it doesnt give us any guarentees and still our goal is to reach the 5 year mark
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LOOK AT THIS interesting stuff: (copy-paste from the following links: http://onlinelibrary.wiley.com/doi/10.1002/jso.22140/abstract;jsessionid=B9C904FB4EA1E69E6A07D7B3A8CE90E9.d02t04 and http://en.wikipedia.org/wiki/Cathepsin_D)
Introduction:
Data from 199 stage II–III breast cancer patients who failed to achieve pCR after NCT were used. Variables at baseline and at surgery (age, menopausal status, tumour size, grade, histotype, node status, vascular invasion, ER, PR, HER-2, Cathepsin D, P53, Topo-IIα, Nm-23, Bcl-2, BAX, MDR, GSTN, PS2, P27, Cyclin D1 and Ki-67) were investigated.
Results:
Tumour marker Ki-67, Cathepsin D status and number of positive lymph nodes at surgery were significant prognostic factors in multivariate analysis for both DFS and OS.
I didn't know anythng about cathepsin D so looked it up:
Transcription of this gene is initiated from several sites, including one that is a start site for an estrogen-regulated transcript. Mutations in this gene are involved in the pathogenesis of several diseases, including breast cancer and possibly Alzheimer disease.[2]
(this is the second time I see breast cancer and Alzheimers disease mentioned together) It has been used as a breast cancer tumor marker.[3]Cathepsin-D is an aspartic protease that depends critically on protonation of its active site Asp residue and gets activated at pH 5 in endosome of hepatocytes where it degrades insulin. Along with Asp-protonation, lower pH also leads to conformational switch in cathepsin-D : the N terminal segment of the protease moves out of the active site as pH drops (there seems to be the same link here with insulin levels and disease - high insulin levels leads to breast cancer growth, dropping of ph around the cancer cells, ketones instead of glucose slows down tumor growth and prevent pre-cancerous cells to become invasive, in alzheimers it's hypothesized that it's a sort of diabetes where brain cells become incapable of using glucose - therefore depend on ketones - something cancer cells don't like as well).
Well this is far from an exact explanation but isnt it interesting how low ph, insulin levels and stuff keep popping up???
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Aaa agh I don't know what all this means.. I am sorry but its overwhelming and I do not understand it.
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Here is an interesting article in terms of radiation even in neoadjuvant and mastectomy setting. http://theoncologist.alphamedpress.org/content/7/6/539.full#sec-7
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Shari - That's a good article. That's the way the RO from my institution, (who felt I was ok not to have radiation) explained everything to me. Good find!!
Deep breaths......try to remember that by the Summer, you will be well on your way to complete health. I do think about the whole growing old thing too often. I always knew that I was probably going to get breast cancer....just because of my family history with my mom and my aunt. But, I always thought I'd be 62, not 42 when I was diagnosed. That puts a whole new spin on it for sure. Now I say I'll be fortunate to live till I'm 62! Then I have to talk myself out of that thought and say "Well, I could die tomorrow in a car accident"......No one knows their future. ((((SIGH))) again!
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That's exactly what I mean.. I always knew I was mortal but at 31 with breast cancer.. i realize how mortal we are for real.. i like u will savor getting to b in my 60's, hell I want my 40's up until my 90's. I hate to think this cancer will b the end of me.. Because it won't.. Just a bump in the road...that's what I have to keep telling myself.. I know soon this crazy phase in my life will pass and things will return To some sort of normal. A new normal.. Thanks wildrumara!
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This news is so depressing for someone like me without pCP and with 10 nodes, all with macrometastises and extracapsulation AFTER chemo (A/C + T).
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They told me every breast cancer is unique... Mary... U r doing well now... so focus on that.. Granted I wish I could take my own advice.... And these studies look at the majority.. Not everybody has those same results...I dunno .. I worry too.. I hate all this stuff... Sometimes coming on the boards does not help me, it only makes me more anxious and worried.
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Dear Shari: Thanks so much! Yes, I am doing very well now, one year later. I appreciate your encouragement. It looks like you should be almost finished with chemo. That will be a great day!
I looked at my path report tonight to see if it had the information for the calculator mentioned above, which it does not. It was pretty depressing. I had not noticed before--I guess there's only so much that the mind can take in at one time--that of my 10 nodes, one measured 4.5 cm! Who has ever heard of a node that large? Yet I did not and do not have metastatic disease. Although not an intensely religious person, I do not believe medicine alone can help such a situation.
While there is information here in the forum that is sometimes depressing, that is outweighed by the helpful information of which I find some daily plus the neverending support. It also makes me feel better to help others here when I can.
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Chemo done march 1st... I am scared for surgery and for path and anxious every week this friggin tumor is in me.. One day it feels smaller and one day it feels enormous.. I have sever anxiety attacks at times... But I going to try and take it east and relax and not let myself go there too much.
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Shari - I remember the days leading up to the end of chemo and before surgery....it was tough! Do you have a surgery date yet? I remember I waited about 5-1/2 weeks until I had surgery after chemotherapy ended. I have three busy children and I didn't want to miss going away with my one son to a hockey tournament in Rochester, NY, so I pushed the date of the surgery back (how crazy is that). That was too long to wait. I think my docs said I had to wait at least three weeks after chemotherapy to let everything get back to "normal". Funny thing, when my plastic surgeon came in to the preoperative area to mark me before surgery, he said he could tell I wasn't nervous....that I was excited. He said "I think you're going to jump off this table and onto that gurney". Sounds weird/funny, but I actually was. I have never wanted to get something over with so bad, after waiting for such a long time. I truly wasn't nervous, I just wanted it over with. Plus, I truly felt that God was with me I had a sense of calmness and serenity that I can't explain. I'm not sure if you have faith, but I will say a prayer for you (((HUGS)) I can feel your anxiety and I wish I could take some of that away for you!! (((HUGS)))
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