Neoadjuvent vs adjuvent - help!!

mira845

i think I spelled all that right ^

I went to to breast surgeons so far for opinions.

First, a woman in NYC said lumpetomy. She said I have enough breast tissue that it won't be so noticeable. My ILC lump is around 3-4 cm. She wants me to go for an MRI to check nodes and anywhere else. I had a suspicious node on the sonogram that wasn't biopsied yet. She said if the node was still suspicious she would remove it at the same time as the lumpetomy. If it doesn't show up in the MRI then she would do the dye and a sentinel node biopsy. Then radiation, them possibly chemo and hormonal therapy since I'm positive with the hormone receptors.

Now the second breast surgeon I saw today, a local guy, but came from NYC centers, says "wow, why didn't the do a biopsy on the node when they did the lump since they flagged it as suspicious?" Yeah, why didn't they?? Anyway, he says I am a perfect candidate for neoadjuvent treatment. He says I will have to go through chemo anyway, why not shrink the tumor before its removed so as to take less mass of tissue. He thinks if its taken out now it will leave a void and be noticeable. I would also have more time to decide if i want to go with the lumpectomy way or mastectomy instead of jumping right into surgery. He wants me to get the node biopsied and an MRI too.

OK, so two different opinion's. Yay. Any comments from you ladies would be much appreciated. I do have one more BS to see tomorrow. I'm dying to see what she says!

inks

I had a suspicious node too and they did not biopsy it. I ended up only having micromets in that node. Since you have to do chemo already why not do the neoadjuvant - you will be able to see how well the chemo works. 3-4 cm sounds large for a lumpectomy unless you were large busted already. Pick a surgeon you like since you will be seeing them for a couple of years.

pennsygal

I had a node show up on the initial mammo, and they did biopsy it when they biopsied the tumor. Because of that, and additional nodes seen on MRI, along with Grade 3 and a Ki67 of 60%, my docs decided that neoadjuvant would be best for me. My tumor was palpable, and it has shrunk to the point that it can no longer be felt!

I agree with inks - choose the surgeon you like. I had a bad feeling about the first surgeon I saw - did not feel that he was engaged, and never seemed to get satisfactory answers from him. I got a second opinion from another surgeon in the same group, which immediately felt right. It is very overwhelming to weigh all your options. The fact that the second doc wants to do an MRI and the node biopsy is a good sign - it sounds like he wants a complete picture before making a plan.

mira845

i am confused as to why it is standard to see a BS first. It makes much note sense to see the MO first to discuss treatment. They have the pathology from biopsies and if its not enough then talk surgery.

Both BS's want MRI's. The first didn't make a big deal about the suspicious node not being biopsied like the second guy did.

My friend says the first BS is being precautionary since getting the pathology results from the tumor and nodes she removes will guide the treatment while the second guy is making his surgery easier and there can be a possibility of over medication with chemo before all pathology is know.

OMG...it is overwhelming!! I am so curious as to what the 3rd BS I see tomorrow will say.

I think that will also make some appointments with MO's.

I'm getting nervous as to how much time this information collecting is takinge though.

BTW, I am 51 and the biolsy report says invasive carcinoma with ductal and lobular features. So its both?

treelilac

Did the report say anything about receptor status? Grade? Ki67 (not every lab reports this)? They might influence your decision.

tdalanno

Hi Mira845, Sorry that you have found yourself in this situation. You are going about everything so well, get as much information and opinions that you can. The decision to have adjuvent versus neoadjuvent should probably also include information about your hormone and Her2 status. Neoadjuvant is good for both seeing if they can shrink the tumor size and also used if your cancer is fast growing and aggressive. I think I would push for more information about the type, stage of your cancer, and hormone/Her2 status so that you can make the most informed decision possible. Don't forget to ask for copies of all pathology reports and then ask the doc's to explain each section.

mira845

ER+/PR+ , HER2-

Nobody has mentioned stage yet but the suspicious node and size might? The report says 2.7 cm but BS thinks it feels more like between 3-4 cm.

No grade or Ki67 mentioned either.

Fast growing...I would think yes because the damn thing kind of just appeared one day.

Kicks

If always surprises me when so many say that they jumped right into surgery without first seeing a Chemo Dr (Medical Oncologist/MO) and a Rads Dr (Radiation Oncologist/RO). All 3 are involved in the total TX (treatment) plan. It only makes sense for the TX plan to be together before jumping into one section.

I did see my Surgeon first on Mon (Thurs before I had had a new mammo [last one was less than 2 mths old - clear] and immediately had US and biopsies that afternoon. Next morning [Fri] at 8 the Radiologist called me with the path. report - IBC.). I saw my Rads Dr on Wed and my Chemo Dr on Thurs. I did not see my Surgeon again until at the hospital before he put my port in. Did not see him again until a week after end of neoadjuvant A/C - a week before UMX. Basically - Surgeons 'cut'/operate, Chemo Drs do Chemo, Rads Dr do radiation - each Specialist in their field.

Also there is also the possibility that both neoadjuvant and adjuvant may be the best TX plan. This does not seem to be all that common but it definitely worked for me.

There are so many variables with each of us as to what is the best TX plan. Not all types of BC are the same in how they need to be TXd, we come to TX in different levels of health which can effect the options, we have different beliefs, our Drs are all different, are but a few of the things that come into play. It is great to give what we have experienced - but it was unique to each of us individually, though many can be very similar no one can say (in honesty) what anyone else will experience even with similar DXs. There is no "One Size Fits All".

Kicks

In my case, my Surgeon was not part of the Cancer Center, my Chemo and Rads Drs were. 'I' was taken to thd Center's Board for evaluation. My Chemo Dr is on the Boards at several large facilities around the USA and he also 'took me' to those.

As kayb said as time passes - TX plans change and the different new TX come into play. When I was DXd in Aug '09, I do not remember seeing anyone (maybe a few) who were not IBC doing neoadjuvant. In the years since it is becoming more common for other types also.

For some - TX needs to start almost immediately as days make a difference. For others - there can be a longer time frame to get into active TX (be it surgery or Chemo or ?).

All BC is not the same, TX plans are not the same for all types, the prognosis is not the same for all types. There are IDC, DCIS, ILC, LCIS, IBC and other types that are rarer than IBC. They all do not form in the same way - IBC forms a 'nest' or in 'bands' so neoadjuvant is needed to get it to form a 'lump' with margins before surgery. It is not common (only between 1% - 5% of all DXd BC) so there are a lot fewer who deal with it and thus less research has been done.

inks

I saw the surgeon first but the physicians assistant from the MO's office was there too - best of both worlds. It does seem that "cancer centers" involve all treatment parts when deciding about treatment. But the tumor board did not agree on what to do with my nodes. I hope third time is the charm for you!

mira845

so I just saw the third opinion BS.

She explained that my hormone positive status do not make sense to do the neoadjuvent therapy since this cancer does not respond well to it.

She also gave me the hope that i at just have to do radiation and hormone therapy.... Possibly No chemo? I am terrified of chemo. But this glimmer of hope make this even worse because now that I have it and its taken away, torture is all I can say.

She is also not a big fan of an MRI for me. She wants a FNA of the suspicious node.

She sent me to a plastic surgeon to discuss my cosmetic options since she would be removing a fairly large amount of tissue in a lumpectomy.

Any thoughts on this 3 and totally different opinion?

Cheesequake

I was offered neoadjuvant chemo and declined because I am so terrified of chemo side effects - I wanted to have a full path report from surgery and know exactly what we were dealing with before moving forward with other treatment options. I did a lumpectomy, and am now preparing to start chemo (though I might decide to reject it at any moment, it's an incredibly difficult decision to make and as I said, I'm terrified of it.)

Here's something to consider - if you have neoadjuvant chemo and the tumor shrinks, you'll know it has some effect. If you have the tumor removed and then do chemo, you have no way of knowing if your cancer is responding to chemo - as I understand it, they don't have a way to test for effectiveness after the tumor is gone, you're just going on statistics and hope. I find myself in this situation now and I hate it.

ElaineTherese

Cheesequake is right; neoadjuvant chemo does give you a sense of whether or not it is working. After my chemo, a PET scan and MRI showed no active cancer remaining in my breast and node (that had tested positive). While chemo is no picnic, it is systemic treatment (unlike surgery or radiation). It is designed to kill the cancer cells in your bloodstream and lymphatic system so they won't make a new home somewhere else, like your bones, liver, lungs, brain, etc.. I'm glad I had chemo, but that's because it was appropriate for my cancer type (Grade 3, triple positive). Chemo is certainly not appropriate for many patients who have very small, early stage tumors.

mira845

well, the third BS called me today and said after cinfering with the PS I saw, she wants me to get an MRI. She said the US and biopsy report don't agree on the size and the MRI would give a better picture. She prob wants to see that suspicious node too.

My ER and PR are 90% positive. She said that was good.

What I don't understand is if the high percentage hormone reseotor status doesn't respond we to chemo then why have it at all? Arr e the little escapees that might be floating around in my body the same cells as the tumor?

sauvez-la

If your doctor is taking surgery & rads, you may want to check out brachy-therapy (internal radiation) which is commonly used for prostate cancer and works really well if breast cancer is well localized and not touching muscle

twiggy2

Most Important to help with the overwhelming process you are in the midst of - Call American Cancer Society & ask for the: PERSONAL HEALTH MANAGER - could not imagine how helpful this will be in this process. Has a binder with folders for: 'Dx & treatment', treatment center, appts & contacts, test results, medications, insurance info, resources, etc. All in one organized place! Was told they now have them at all chapters & also at Cancer Centers across the country. Wish so much it was available in 2007 when my journey began, it's amazing! Their number 800.227.2345 or Cancer.org - well worth contacting them.

On to your original concern & hope this helps give some perspective. Neoadjuvant treatment worked great for me (at 47) & is the best option in many cases, especially those that are hormone positive (receptive). As far as surgeons, go with what feels comfortable, but the best do become involved early on for a extremely important reason, what is removed, by biopsy or surgery, controls what later treatment will be. Sometimes treatment is restricted by when surgery is done, depending on the exact cancer profile, as well as what other treatments are available. (I'm certain in my case, had I had surgery 1st, my course of treatment would not have been the success it was, because the complete staging wouldn't have happened before removing the tumor, thereby limiting the available information & treatment.)

I know it's hard & scary, but now is the time to slow down & get ALL possible information & options laid out for you. Also, time to do research, you or someone you trust to help you, but PLEASE if possible, DO NOT go to appts alone, DO take notes or recordings & GET COPIES of results. Will be able to keep it all, nice & neat, in the Health Manager. Lol

My Breast Surgeon is still very involved in my case, surgery was on 6/4/08, but she is the one that orders all my scans & no one need try to override her. See her & Oncologist at least once a year. My MO did try one time & she was not happy with him & let him know to never do it again! Lol (Not in a mean way, the meet weekly to discuss all their cases, she just wants specific tests done & as she wants them, ex. dye or not,) I love my team & don't plan to go any where else, they saved my life) It was not the 1st place I went. First, was same surgeon that did original biopsy & he wanted to do mastectomy asap & then send to MO & RO to discuss treatment. I called to ck on 2nd op at a major University hospital/NCI facility, they were affiliated with the hospital that did the biopsy, so getting the slides was no issue. They got me in within a couple days & my real staging began after meeting the surgeon, which she explained how & why it was done this way. Many far too long days of blood work, Bone Scans, PET scans, 3D mammos & many more I forget, including MRI guided breast biopsies of 3 more areas of concern, done by BS & no bruising. Did sentinel node biopsy which showed 1/3 cancer, which changed my stage & options for treatment, as well as being ER+, PR+ & HER2+. Discussed surgery then chemo & rad or chemo then surgery & rad, she then took me to meet MO, explaining where we stood on results & timeframe. WE decided to start with Herceptin for the HER2+, then start Chemo the following week, with the hope of good response & "kill" cancer. They scheduled for a week off, time for me to regroup & come back recharged & ready to fight! That in itself helped build trust, they wanted me rested & clear headed to move forward. It worked, by the end of Chemo 6 months later, there was no evidence of disease (NED) in tests. My surgeon, in her words said, "It's time to go in & take out the trash!", with a big hug! We did & she did a wonderful job. So thankful for listening & not jumping out of fear on the 1st surgeons suggestion. Don't know where you live, but If possible, go to a National Cancer Institute affiliated facility, can look up all locations on their site.

A lot of people make fast decisions, just wanting the cancer gone & think get rid of the breast to be done, but it's not that simple. Many times, the breast is in a way, the least of the issue, genes, hormones, her2, etc, count as much or more!

My opinion, the 2nd surgeon is giving you the better chance for the most options available for your long term treatment. Bottom line, that is what is important, knowing what the true picture is & deciding from there. Now there are so many more detailed tests available that weren't then, so don't hold back on asking for them to be done. Couple to ask about: Oncotype DX & Prosigna, they both look at multiple genes that can help direct treatment, now & at any time in future that may be needed. Others out there too!

Wish you great luck & thoughts are with you. You will get through this, even though it's a dark time now, you will find light in knowledge! Prayers for your peace in what ever decision you make.

twiggy2

Very sorry to say it, but I'd run from #3! May have people mad at me for saying this, but hear me out first, please. She's talking against known results of very good studies & in practice, of treating hormone positive cancers before surgery. It's not only possible, but probable to at least find out if will respond & exactly what chemo, hormone, biologic, targeted or any combination of treatments your specific tumor will respond to, invaluable information to have. Once a tumor has been removed from your body, will no longer have the opportunity to see the REAL results of various treatments on that specific tumor. They will not ever respond the same in a dish, dynamics have changed, so once removed, it's a game of chance to an extent, finding what will work. After removal, it's much harder to trace, track or otherwise screen for results of treatment, costing time wasted on treatment that may not work. With the tumor in place, it's fairly easy & fast to see,exact effect a treatment protocol is having, keeping in mind, this can still be fluid, but still better to see results.

Please discuss this with the every MO, RO & PS you speak with. Very Afraid # 3 is operating on some older protocols, refusal to accept change or progress in treatments or flawed data. This is your life, do as you feel best, but you don't get a redo on such an important aspect of your treatment plan. Thankful the PS sees the need for an MRI, would still be asking for more staging to be done, NOW! Could you talk to #2 & get his take on this advice she has about hormone positive treatment?

May want to check results from Clinical Trials, they're posted on NCI & other Trials sites, get an idea of real numbers. Also, please keep in mind, this organization has some stellar medical authorities involved in this community. They may be able to guide you to someone that may help with this situation that has left you confused about your diagnosis & treatment.

Again, best wishes in your decision, it's a very hard time. Thoughts with you, also feel free to send msg if have any questions or comments.

Valentine99

I'm not sure about the 3rd doctor. I am ER/PR+ and HER2-, had neoadjuvant chemo, and my primary tumor shrunk to where it couldn't be felt. Now it didn't completely kill all of the cancer cells, which was found when they did my mastectomy, but it did respond very well.

Can you get in a group that takes cases to a tumor board? My BS had planned to do surgery first, but when he took my car to the tumor board they determined chemo first was the better plan.

twiggy2

Kayb, agree with you, but I was using "chemo" more in regard to chemical treatments, including hormone, biologic, targeted or other drugs. My main point was that doctor not feeling a MRI would be helpful. Doesn't sound as if all the staging tests have been completed that would help with her treatment plan with the best chance of success, NED later. That's of more concern, planning surgery without having the big picture, or knowing what her tumor was most likely to respond to best.

Think we're both on same page with this, she's trying to make a decision, before having all the details needed to do so & feel confident in her full treatment plan. Sure we both know those that have been pushed for quick treatment out of fear by doctors that want to jump in and start cutting. I know I dealt with that & chose to go to the closest NCI facility to hear them out on the best plan of action, and very glad that I did, think it made the difference between my being able to remain cancer free for this long.

Wishes to you for your continued good health!!!

mira845

The final BS, #4, opinion....kind of the same as #2... But a little different.

He said he wants a FNA of the suspicious node. He said he could feel it. If that node is positive, then neoadjuvant chemo, hoping to clear this node and possibly reduce the tumor...but more importantly clear the nodes so as not to have to take them out. If the node comes back clear, then a lumpectomy with SNB. He was also not a big fan of MRI's unless we are doing the neoadjuvant treatment because then we can see before and after treatment.

He made a lot of sense but here's the problem, I hated that place. Everything about it. I liked BS #3 and everything about that place!

I'm scheduled for the FNA of the axill node Wednesday and an MRI Thursday.

I'm going to call back Dr #3 tomorrow and see what she says after I explain DR #4's opinion.

Just to let you know the 4 opinions I got were all in NY; #1- Weill Cornell, #2-local doc who was trained at MSK, #3-NY University Langone, #4-Memorial Slone Kettering.

Anyone have experience with any of them they want to share?

Tomboy

I refused neoadjuvant, because then I wouldn't be able to be accurately staged.

Stephmoen

I did neoadjuvant chemo because that was the only way I could get perjeta added to my chemo cocktail which is just newly approved drug for her 2 positive hoping it does the trick..having a hard time finding my once very palpable lump after 3 treatments 3 to go..I did have a pet scan before to be sure there were no lymphs or organs involved and it was negative