Diagnoses/biopsy results
Comments
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Btw, if you have any doubts about the advice you are receiving about axillary surgery, feel that you would like to consider or explore different surgical options, or simply would like an additional viewpoint and expert input, please do not hesitate to seek a second opinion at an independent institution. A review of imaging and pathology can be requested as well. It is quite common to seek a second opinion prior to surgery, and some people find they are more comfortable with the second team.
Look for hospitals with a comprehensive breast cancer center. For example, if you are reasonably near an NCI-designated cancer center, that may be a good option:
http://www.cancer.gov/research/nci-role/cancer-cen...
Others have recommended NCCN-member institutions:
http://www.nccn.org/members/network.aspx
BarredOwl
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seq24, You have been given great information from everyone who's replied to you. I know how frightening this diagnostic stage is, however you seem to have a good grasp of a lot of the complexities. I just want to add to what others have said:
a) sentinel node dissection is the usual standard of care in your situation
b) the post-surgery pathology report will reveal the whole picture, which a biopsy or even MRI or other scans doesn't.
c) you can ask for a new MO, if you aren't satisfied with the one you've seen.
d) we all have to be our own best advocates. You sound like you are doing your best to get evidence to back up the very odd claims of your doctors so far.
Hope it all goes well on Monday.
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and we will all be in your pocket Monday.
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Once again I must say a huge THANK YOU to everyone who has offered their advice and support after my initial post on this topic. You have all been amazing and given me a lot of insight to this issue since I am so very new to all of this. I appreciate everything you have all done to boost my spirits, enlighten me on procedures and testing and most of all just to listen to all of my concerns. I don't know anyone personally who has gone through this at this level so all of your expertise has been so helpful! Thank you, thank you, thank you. You have all become a huge part of my support system. Still scared out of my mind for surgery and what comes after but your comments here are leading me to believe that the outlook isn't as bleak as I am being told. You are all much appreciated!
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MarieB, thank you. Your comment brings up another question about running pathology while you are on the table. That came up during surgeon appointment last week and he said he could "look at things under the microscope", but he wouldn't be able to tell much from that anyway. Since I'm so new to this, I figured that was all that can be done at that time so I didn't question it. What else can they do? Sounds like I have something else to add to my list of questions for Monday. Thoughts?
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Just thought of throwing something in here: no surgeon knows how many lymph nodes they will take out. The number is not fixed, everybody has a different number of lymph nodes, as weird as it may sound. Yes, there is the general anatomy manual but in this respect the number is not identical for everyone. In the same area someone may have only 5 nodes while someone else may have 25+. So they won't know how many until the pathology is actually done.
And again, ask about the level - there are 3 different levels of lymph nodes in the axilla.
Check here: Axillary lymph nodes levels
If you only get one level dissected, you still have the other two helping with moving the lymph around so the risk of lymphedema is way lower (there is a risk simply from a lumpectomy or mastectomy). As I said in one of my previous posts, in my case I had established with my BS that I will only have the level II ones removed as those were the closest to the sentinel node before mastectomy.
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Hi!
Seachain is right; everybody has a different number of lymph nodes. In an ALND, surgeons usually remove Levels 1 and 2 lymph nodes and leave Level 3 alone. I had all my Levels 1 and 2 nodes removed, which in my case, was 20 lymph nodes. I then had my node area radiated. You'd think I would have gotten lymphedema, but I did not. That, too, varies from woman to woman.
In your case, you could follow Seachain's path and ask your surgeon to minimize the number of nodes removed. That will reduce your chances of getting lymphadema. Best wishes!
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My doctor removed the snb's sent them to pathology, when they came back positive she removed level like and ll. My total was 9.
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After reading all of your comments, I am wondering if my surgeon just isn't explaining things very clearly. All of your stories sound like your surgeons went in carefully removing each node, checking it and going on if necessary. The way it was described to me is this "I will go in there and cut out a chunk of tissue under your arm, a pretty big chunk, (while holding his fingers up to about the size of a grapefruit). That will probably have 20 or so nodes in it. I can look at things under a microscope but wont be able to tell much from that. We'll just have to send it in and see what happens". Then he went on to say, "when you heal you will have a large indentation under your arm but that can't be helped". Such encouraging news! Everything sounds like the luck of the draw to me. That's a scary thought. He is supposed to be one of the top surgeons around for breast surgeries though so I am not sure how to take all of this.
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BosomBlues, I am not sure why he is saying this. He had a booklet with illustrations of the area he will be operating on. He drew two vertical lines, one towards the front side and one towards the back, on the underarm area. He said I will cut here, and here, and take out what is in the middle. Then he went on say what I mentioned above and to show with his fingers the grapefruit size of tissue that it will be removed. He is very kind and supposedly an expert in the field, but as marieB said above he doesn't have a way with words that's for sure. My list of questions before surgery is getting VERY long! And my level is being scared is increasing by leaps and bounds every day!
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Hi seq24:
You are information gathering now, and trying to understand, which is stressful. It sounds like he was trying to explain what level nodes he would remove and the extent of the axillary surgery. You can ask him to explain it again, to be sure you understand what he is recommending.
To prepare for further discussion, this information from NCCN guidelines may provide some helpful background. You may have to read it over several times carefully. (It is not a substitute for case-specific expert advice from a breast surgeon.)
The NCCN guidelines for breast cancer (Version 2.2016) state very generally:
"SLNB [sentinel lymph node biopsy] should be performed and is the preferred method of axillary lymph node staging if the patient is an appropriate SLNB candidate (See BINV-D)."
"However, not all women are candidates for SLN resection [sentinel node biopsy]. . . . In addition, potential candidates for SLN mapping and excision should have clinically negative ALNs at the time of diagnosis, or a negative core or FNA biopsy of any clinically suspicious ALN(s).
The panel recommends level I or II axillary dissection when 1) patients have clinically positive nodes at the time of diagnosis that is confirmed by FNA or core biopsy; or 2) sentinel nodes are not identified. For patients with clinically negative axillae who are undergoing mastectomy and for whom radiation therapy is planned, the panel notes that axillary radiation may replace axillary dissection level I/II for regional control of disease.
{ MY NOTE Above it says: level I OR II
Traditional level I and level II evaluation of ALN requires that at least 10 lymph nodes should be provided for pathologic evaluation to accurately stage the axilla.(173,174) ALN should be extended to include level III nodes only if gross disease is apparent in the level II or III nodes. In the absence of gross disease in level II nodes, lymph node dissection should include tissue inferior to the axillary vein from the latissimus dorsi muscle laterally to the medial border of the pectoralis minor muscle (level I/II)."
The information from the guidelines is rather top-line. Also, as a layperson with no medical training, I do not know how the above information would be applied to a specific patient, who may have certain clinical findings and a FNA or core biopsy of a lymph node that is deemed "positive" (or what specific lymph node biopsy findings are deemed "positive" for this purpose). This leads to questions like:
(1) What is the current standard of care regarding surgical axillary staging, in light of applicable consensus guidelines and possible recent clinical studies, in patients like me with my specific clinical and pathologic lymph node findings?
(2) Please review the main pathology findings from my lymph node biopsy. Is this amount of node involvement considered sufficiently "positive" to warrant axillary lymph node dissection (ALND) in my case? Are there any other alternatives that would be suitable in my case? Would the recommendation for ALND be the same whether I received lumpectomy plus radiation, mastectomy, or mastectomy plus radiation?
(3) If axillary dissection is recommended, what is the initial surgical plan regarding removal of Level I, Level II, or Level III nodes? Do any other findings, such as clinical or imaging findings about my lymph nodes, factor into this initial recommendation?
(4) Is it possible that this initial surgical plan will be modified during surgery to remove an additional level or levels of nodes? What criteria will be used to decide on removal of each additional level?
Please note that guidelines discuss what is typically done, and do not necessarily address all possible exceptions. Depending on the subject matter, there might be recent clinical studies that would support a slightly different approach (I have no idea in this case). In addition, in the appropriate case, physicians and patients may depart from what guidelines provide, based on clinical and pathologic findings and patient presentation. This is why you are seeking current, case-specific expert medical professional advice based on your clinical, imaging, and pathologic findings. It is also why it can be helpful to seek second opinion review and confirmation that the work-up has been sufficient, the interpretation of all imaging and pathology is correct, that the surgical advice incorporates all relevant clinical, imaging and pathology findings, and that another medical professional agrees and would recommend the same approach (or if not, that is important information to have).
Best,
BarredOwl
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He actually explained it very accurately. He doesn't know how many there will be.
The lymph nodes are not in the same place for everybody, the same as they are not in the same number for everybody.
They are not like, let's say, a fistful of beans thrown in a bowl of mashed potatoes, your stir through the mashed potatoes until you find the beans, nor are they at precise spots.
That is why that is exactly what they do, they remove "a chunk" of tissue and the pathology dissects that chunk of tissue, find the lymph nodes and dissects them.
Look at everybody's signature, look at the ALND status, some ladies have let's say 3/12, others 1/24, others 9/14, etc. Because each of us had a different number of lymph nodes.
Only the position of the group (level) of the lymph nodes is known (sub-pectoral, etc) not the exact spot of each lymph node or the number of them.
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It's pretty clear he wants to do a full node dissection as that is what he is describing with his charming language
. I am so pro full node dissection having had one and dealing with it fine...but he should be able to explain why he has chosen this path and it should be supported with scan information. It may be for example that several nodes seem affected to him and in this case he would be justified in taking an aggressive approach. While I completely understand why women here are advising less, if he has good reason and you end up getting a full node dissection report back and I will give you my lymphedema management advice! Now try to enjoy your weekend and avoid googling!
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I agree that understanding the recommendation and basis for it is the current goal. After that, the best way to probe medical advice is via the second opinion process.
Marie, regarding seq24's stats, see the third post in this thread from seq24, noting clinical stage 2A and "Biopsy report says the node contains "fragments of metastatic carcinoma".
For seq24, please note that despite the confusing terminology of pathologists using AJCC staging criteria, a "metastasis" or smaller "micrometastasis" in an axillary lymph node is a type of "regional" spread. That is not the same thing as "distant" metastasis (disseminated or "metastatic disease"). However, it is associated with increased risk of distant recurrence, and so it is used to inform decisions about systemic treatments.
BarredOwl
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My surgeon is not in favour of axillary node clearance at all.
He said in the past it was standard practice but now he feels it just creates problems. He said most often the vast majority of cleared nodes came back negative and in some cases women were left with terrible problems with lymphodema. He said every day he feels more confident that the best practice is to monitor closely. In all of his patients he has treated this way in the past, only 2 have required further surgery for more cancerous nodes and their outcomes were no different to those women who didn't need further surgery.
Thinking of you seq24.
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Hello all,
I know I have received many great responses today. I have been gone all day and I will get caught up on reading all of your wisdom later tonight. Just wanted to let everyone know that I am not ignoring anyone.
On another note, I am having problems with this site. Every time I log out or shut down my computer it makes me reset my password to log back in. Is anyone else having this issue?
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All I can say is WOW!!! I am totally amazed by the outpouring of wonderful advice and suggestions you have given me regarding my surgery on Monday. I actually just went back and reread this whole thread, thew away my whole list of questions for the surgeon and rewrote 2 pages of new ones based on the thoughts you have shared here. Please send me some good thoughts and prayers on Monday about noon. I am still terrified of what is to come, but I feel better armed with all of this knowledge.
I went wig shopping with my daughter today. It didn't go well. I spent most of the time crying at the realization that this is really happening. One lady asked me if I was ready to fight. I couldn't even answer her. Just more tears. The thought of chemo is scaring the @#$% out of me!!! I just don't know how anyone can humanly go through it and still be able to function in their normal life. Some people have told me that handling the side effects is mind over matter. How can that be when they are filling your body full of poison? I don't know how your mind can overcome the effects of that. That will be a whole new topic of conversation.
Thank you again so very, very much!!! Even though we have never met in person, I have found such a source of caring and support here. You are all wonderful!
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You certainly have had an amazing response from everyone! Could I just say that it's not a foregone conclusion that you will need chemo yet. You still haven't got your surgical pathology results or had an Oncotype DX test. Best wishes for surgery.
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Optimist52--I keeping thinking those same exact thoughts. Maybe I won't have to have chemo because they really don't know that much yet. But the doctors are both certain enough that I will have to have it that they are putting in the port during surgery on Monday. I will happily go have it removed if it doesn't have to be used. Without getting too personal here, the small lump that the surgeon said he felt 2 weeks ago has disappeared. I had felt it too but I think it was swelling from the biopsy because it is not there now. Maybe that means good news?
Thanks for your well wishes!
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BosomBlues so I guess I'll just ask you now since you were able to sail through chemo, how did you do it? To me it doesn't sound humanly possible. I just don't understand this mind over matter thing. Even the doctor said that 90% of the effects of chemo are controlled by your mental state. How can that be when they pump you full of chemicals, etc? Your body isn't going to do anything but react to that. How can your mental state control that if something inside is making you that sick. Doctor asked me if I got motion sickness or had morning sickness when pregnant. The answer to both was a huge yes. She said that is a good indicator or how you will feel during chemo. I see it as a torture chamber more than anything else. I am terrified of losing my hair or of even looking at myself in the mirror, let alone having anyone else see me in that state. I work with kids and for their sake I have to look, act, sound and feel like the person they are used to seeing. The wig shopping didn't go well yesterday because I was a bucket of tears the whole time.
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seq, - I have been reading and not posting much because others have been so much better at explaining and offering advice.
I think we were all equally afraid of chemo, and I know that I, for sure, shed some tears when I had my hair first cut short, and then buzzed off. BUT, - I did get an amazing wig, that was quite similar to my hair. I lost my hair about 10 days before my daughter's wedding but, with makeup and that wig, no one knew!
The drs have wonderful anti-nausea meds, too. If you arent feeling well they will make you better! I took Emend, which was a HUGE help!
Hang in there, - you WILL get through this!
Hugs from NYC
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I kind of agree with you BB and Marie. You are living proof that is not true. On the other hand I was talking to a friend of a friend on the phone the other day and she went through the same procedure at the same place with the same doctors as me. She said on a scale of 1-10 the worst she ever felt was a 4 and she took the mind over matter approach. She said (and I could never see myself doing this) that whenever she started feeling bad or tired she went and took a rigorous 2 hour bike ride or went out and ran for several miles and it helped her immensely. She said all the while she talked herself into feeling good and it worked. She also had 7 kids at home. I don't think I am a strong enough person to do that but I have to find some way to deal with this as I plain just do not have time to be feeling bad. I have my family, job and lots of other huge responsibilities that I have no choice but to keep up with.
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anotherNYCG, thank you for the encouragement. I am just so scared of how I am going to react to treatment! I am not even sure how I can go out in public with a wig, scarf, hat or bald head! This is a small town and I know everyone. Not sure how I can deal with a million questions from everyone, let alone have them see me like that! My daughter got married in May, before I knew about any of this, and after I read your comment about your daughter's wedding I know that I never would have been able to be seen like that at a wedding let alone be in pictures! You are a much stronger person than I am. I looked at wigs yesterday and was a bucket of tears the whole time. I just felt ridiculous when she put a wig on my head. It just wasn't me. Thank you for your support and strength!
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Hi seq24, speaking of wigs I have never looked better than while I was wearing a wig. I picked one ahead of time and had it styled to resemble my hair color and cut. Two or three weeks after starting the AC chemo and right before the hair usually starts falling out, I had my head shaved and started wearing the wig the next morning. Everybody at work assumed I had another haircut. I wore that wig for more than a year - every day. It was a good quality rather expensive wig and it was worth every penny.
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BB and muska--Thanks for the reassurance!! I went wig shopping with my daughter yesterday. I about choked on the prices. A human hair wig was $3000! The other one was $450. The person before me bought a $5000 wig!!! The shop owner was very good and assured me it would match my hair exactly. It is just a very hard reality that this is actually happening. The plus side, that even though I felt pretty awkward with it on, it was comfortable and light weight. I just felt like it was VERY obvious that it wasn't my own hair. My own hair isn't that great, but I take pride in knowing that it looks good each and every day. Nobody ever sees me without my hair done. A wig just seems really obvious. In everyone's opinion what is the best type of wig to get, certain brands, etc?
Once again, the wealth of knowledge on here is just overwhelming to me. I so much appreciate each and every one of you. I apologize for flooding this page with all of my questions, concerns, worries and cries for support. You are all wonderful, kind and caring! Thank you!!!
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I had half natural half synthetic, it cost about $600 - insurance covered $350 - and was easy to care for. I don't recall the manufacturer but if you are interested I will look it up The cost included at least two private appointments to pick the wig that would match my natural color, styling it so that it look great on me, fitting it to the exact shape of my head after i shaved it and a demonstration/lesson how to put it on and care for it (sample special shampoo/conditioner included.)
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I bought one from the TWC - didn't want an expensive human hair one because in my mind it was going to be a temporary thing and didn't want to waste money. I ended up wearing it maybe 3 times as my chemo was in summer, that, combined with the every-freaking-half-an-hour hot flashes from the chemopause it pushed me in, made me wear only a silk scarf (that I got for free from one of the places that are on a thread on the chemo board somewhere).
Chemo is a crapshot and luck of the draw as it seems to be with most of what happens when it's about BC. Some people breeze through it and some get life-time side effects. I have neuropathy and fibro from it too, and I'm 6 years out.
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seachain-thank you! I had to chuckle a little at your word chemopause. That's one I haven't heard as of yet. I heard the hot flashes are terrible. I haven't even gotten so far as to read anything on the chemo board yet. I'm scared enough as it is about that and very, very worried about surgery tomorrow. I plan to have a long talk with the surgeon first thing about the many uncertainties he has planted in my mind about how far this has actually progressed and what procedure he is going to be doing. Keep your fingers crossed for me tomorrow about noon. I truly appreciate all of the input you have given me!
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seq, - I am not stronger than you, - we were all fearful, and sometimes tearful, but you will see, - the anxiety from the anticipation is often times worse than reality. You will get through this.
As for wigs, like muska, mine was 50/50 natural/synthetic. It was perfect, from a local store, was about $700 (insurance paid for 1/2).
Later on I did buy another, less expensive, wig that is short and more like the hair growing in : http://www.godivassecretwigs.com/petite-sheila-sho...
Someone on another board suggested that company and I found them to be very helpful and understanding.
There are very good meds to counteract any unpleasant side effects from chemo. Cross that bridge when you get to it.
I hope that your surgery is as easy as possible.
Take a deep breath and keep your chin up!
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seq, as some of us have said before on this thread, the need for chemo hasn't been established yet. With a small Grade 2 tumour, the mitosis rate could be 1 (out of 3) which indicates a slow growing tumour which wouldn't even respond well to chemo. The Oncotype DX test, which you would be a good candidate for, will hopefully give you a score which makes it clearer, or if you score in the Intermediate area (18-30) you could have the Mammaprint test which shows just high or low risk.
Chemo should really only be used for those people who will show a clear benefit over risk with it. A good oncologist will take all your factors into account after your results are all in and decide with you about whether to proceed. The 'throw the kitchen sink at it' approach needs to have good reasons behind it.
There have been so many posts on this thread I can see it must seem a bit overwhelming.
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