TRIPLE POSITIVE GROUP

KasiaK

Welcome dear ladies, just checking in to let you know I'm doing fine. The headaches I mentioned some time ago are gone, anyway I had my head scanned - waiting for the results. I also had a yearly mammography of both breasts - came back clean :-) I'm approaching the first surgery anniversary and the end of herceptin and I'm getting more and more anxious about not being in active treatment (although I'm still on Tamoxifen and zoladex). Can you please let me know what else I could be given once herceptin is done (I'm in Poland and I'd appreciate a voice from the other side of the ocean ). I'll get my 16th herceptin 6 days later than the usual 3 weeks - does anybody know if it makes any difference for treatment efficiency?

Re: neuropathy - I was told to take vitamin B1 and B6. Vitamin B12 has been forbidden.

bareclaws

KasiaK, your experience and mine together show that the MOs’ stances on supplements are all over the place. You were forbidden B12. My MO prescribed it for neuropathy.

moodyblues

Vicky, I wanted to take Biotin to help with my finger and toe nails, they were splitting down into the nail bed and were chipping off.  My toe nails were vacating the premises.  The ONCO 'office' said no, their response was that it could alter my labs so, I didn't take it.  I later saw this.   https://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm586641.htm 

Now I'm just mentioning the part where it interferes with lab results nothing more, I don't want to alarm anyone because this was my doctor office and their opinion.  The article mentions those who take 'high levels' of Biotin.

I know of quite a few ladies who took Biotin and listed it when they went for office visits... their ONCO never batted an eye.    

Melanie 

Ingerp

Uh oh. I started taking Biotin about a week ago thinking maybe I'd get a running start on hair and nails. I won't see my MO before tx #1.

PoseyGirl

LaughingGull - yay to you! You're done! The wait for pathology is arduous; I remember it VERY well. But you're in the middle of recovery and it seems you 're doing well which is awesome.

Kasia, I remember feeling so scared of treatment ending. It's like being dropped from a plane without a parachute, it seems. I think this is where we have to try our best fitness wise, diet wise, etc. It's normal to be feeling vulnerable - I still do...

Hapb, I'm enjoying your new thread. what I like is that there are lots and lots of links and we can each pursue what is of interest to us with respect to diet, etc. So I do encourage some of you to check out Hap's new thread if you're interested in the latest stuff out there.

LaughingGull

Hi sisters,

I am reaching out for info/help interpreting my pathology results. The written report is not out yet, but I went to the surgeon for the one week post-surgery checkup. He had called the pathology people early today to tell me something, and here is what he told me: despite a clear MRI and nothing being palpable, there were cancer cells scattered around the entire area where the tumor was, and also in the two axillary lymph nodes (adjacent so they count as one) that had been already biopsied and had tested positive for cancer. The scattered cancer cells are aggressive, invasive cancer cells. And that now I may or may not be a candidate for radiation in the armpit -will have to discuss with oncologist and radiation oncologist. And that this means we will have to do "scans" in the future.

Also he told me that as a result of my axillary lymph node surgery, they removed five nodes, two of which were positive -the ones that were positive to start with. Does this sound normal? I was expecting them to remove a lot more nodes. 2 positives out of 5 doesnt sound like reassuring. Like 2 positives out of 30 would be more reassuring. Does this make sense?

To me this sounds very scary and frankly, pretty bad news. I will try to wait to talk to the oncologist before entering full panic mode but I don't know if I will be able to. Where do I go from here? What does my prognosis look like given this? It sounds like I am entering a new phase consisting on just waiting for the other shoe to drop.

Terrified,

LaughingGull

SpecialK

laughinggull - it is important to note that complete pathological response, while desired, is not the expected norm. Varying degrees occur, and that is what is the norm. Chemo, whether neoadjuvent or adjuvant, is not really given with the expectation of wiping out the cancer in the breast - that is what surgery is for - rather, it is meant to look for errant cells outside the breast and axilla and eliminate those. Are you continuing with Perjeta? Also, take some comfort that you still have anti-hormonals to provide protection and ask your MO about Nerlynx (neratinib) at the conclusion of Herceptin, I would think you are a good candidate for it.

Blownaway

I took HRT for about 10-12 years after menopause, then hysterectomy. That was after many years of birth control pills. My onco said that the HRT did not cause my breast cancer but now that I have (had) breast cancer, I can no longer take it (duh). Reading above, it appears some onco's consider that HRT does in fact cause breast cancer. So many opinions...

hapa

LaughingGull, I think your path report sounds pretty normal and would be considered a chemo success. Bad would be if the tumor didn't shrink at all or grew. Most people don't get PCR and having the cancer reduced to some scattered cells is a pretty good outcome. I'm guessing they took 5 nodes because those were the first 5 that drained from your affected breast. The first two had cancer but the last three were clean, so no need to take out any more since the rest would be "downstream" from those. I wouldn't want all my nodes removed, that leaves you at high risk of lymphedema. If anything is still hanging around in your nodes, radiation should take care of it. I'm no doctor, but I don't think it's bad news at all.

LaughingGull

Hi SpecialK

Thanks. I was not expecting a complete response -but this sounded like a lot more cancer than they were telling me they expected to find given the pre-surgery MRI results. I am terrified that errant cancer cells anywhere didn't get wiped out, just as breast cancer cells and lymph nodes cancer cells didn't get wiped out. There were "scattered" cancer cells in the initial area covered by the breast tumor, plus in both nodes.

I think the plan was to be on Herceptin + Perjeta, until completing a year -not sure if a year from diagnosis or from the start of first chemo. I will ask about Nerlynx.

Does this make me a candidate for prophilactic ovary removal?

LaughingGull.

ElaineTherese

LaughinGull,

Re: axillary lymph nodes -- everyone has a different number of Levels 1 and 2 lymph nodes, if that's what your surgeon removed. (Might want to ask him what his lymph node removal strategy was.) I had 20, but Special K had 14. I wouldn't complain about having only 5 lymph nodes removed; removing more might contribute to lymphadema.

I think your next move is to talk to your oncologist and radiation oncologist. I've seen some Stage III ladies take Xeloda after surgery if they didn't have the best response to their original chemo regimen. (Xeloda is a pill.)

((Hugs)) You just need a new plan.

LaughingGull

Thanks hapa. Hopefully you are right and this is pretty normal. I am trying to keep breathing and not panic yet until I talk to the onc. My surgeon, who communicated this to me, is kind of a guarded, dark, somber presence and communicates as such. I am traumatized by this guy. He is the person who didn't find my cancer three months before I found it myself.

-- Oncologist on what to expect in pathology after surgery: either no cancer cells, or "very few", and you may or may not need radiation to the armpit.

-- Surgeon on what to expect in pathology after surgery, based on the "very encouraging" MRI report: no cancer cells in the lymph nodes, maybe a few in the breast. Radiation definitely not needed. Now he says the situation re radiation decision falls on "grey area".

I am a bit bummed and terrified. Need to be talked off the ledge.

LaughingGull

SpecialK

Actually I had a total of 14 nodes removed, but 2 of those were the SNB for my prophy side MX. On the cancer side I initially had 1 SNB removed. I had ALND done separately 5 weeks after BMX since cancer was not discovered in the OR, but later in the lab. In that ALND surgery 11 additional nodes were removed, completely clearing levels 1 & 2. I do not have an abundance of nodes, and the number varies from person to person.

laughinggull - I suspect that your surgeon removed axillary nodes until he had a few in the chain that did not contain cancer, but stopped short of removing complete levels in order to minimize your lymphedema risk. I would ask your onc about the density of remaining cancer - are they seeing clusters or ITC (isolated tumor cells)? I second the idea of possibly adding some additional systemic meds - but also ask if your MO has any ideas about whether your tumor was driven more by Her2+ or ER+, or both equally and that may provide some guidance on where to go from here. Maybe ask about doing a BCI test now to see if there is any genomic indication of how effective anti-hormonals will be. That is some out of the box thinking but maybe will offer some value in decision making, and I have seen others do it.

ElaineTherese

Sorry, Special K! I was just working off your signature. I never had any nodes taken from my left side, so didn't think you might have had some taken from your "healthy" side. I didn't realize that surgeons would do that! Almost four years since my diagnosis, and I still don't have my info right.

LaughingGull

Hi ladies,

I had axillary node dissection, not any kind of sentinel lymph node procedure: nodes were not tested during my surgery, the intention was removing the entire fatty pad in my armpit, with as many nodes as possible -that's why the five nodes total count sounds kind of paltry, doesn't it?

Thanks for those pointers on the density of remaining cancer and the tumor being driven by ER+ rather than Her2+, SpecialK. That makes sense.

For those of you who had double mastectomy, that sounds exponentially harder and more painful than having one side only. I wonder how you were able to get up from bed or from anywhere really. I rely on my strong, un-operated-on side for everything I do.

LaughingGull

PoseyGirl

My surgeon took 16 nodes out...my question is this: when do they decide to take a small handful versus the whole enchilada? I would have thought that for any person with our subtype and 2b and above, they’d grab the whole pad? Or am I wrong there? Does it sometimes come down to surgeon aggressiveness?

LaughingGull, as others here said, they don’t expect pcr with hormone positive subtypes. I was told from the get go not to expect it. If you have scattered cells, wouldn’t this mean you had a very solid partial response (partial on the high side?)

LaughingGull

Posey, in my case they took out the whole enchilada (pad) but apparently there were only five nodes in it.

LaughingGull

And I hope you are right and this is a solid response. My onc will tell me. My surgeon has the ability to send me thinking of my funeral.

PoseyGirl

That is your surgeon...others are totally different in time (mine was). That’s really awful to have one like that.

If you are down to scattered cancer cells, then you lost a lot of tumour. I don’t know how big your tumour was, but that sounds to me like you got well over 75 percent shrinkage?

I’m like you, Laughing. I was fighting panic. So I feel your anxiety all the way. But I do know from what you said that you had response - you did...

timetobebrave70

hello everyone. I have a question. I am triple positive. I just had bilateral mastectomy. I went for pathology results post surgery and doc says my margins are clean and no lymph nodes involvement. But she’s sending me to radiation doctor. Why is that? She went explaind why but I can’t unde To even repeat it

Jjewel

I also received a good path report after BMX and neoadjuvant chemo therapy. My Oncologist is sending me as well to meet with Radiation Oncologist to discuss. My understanding was he (MO) wanted to leave that decision to me and the RO. The RO could give me in depth expertise about if it was necessary or not as I fell in a border area. The RO could give me specific percentages pertaining to reoccurrence versus risks. I then could make my well informed decision about it.

coachvicky

Melanie .... Thanks for posting the link to the article.

Like HapB wrote ... it is behind me now.

I am grateful to SpecialK for the connection to her Oncologist so DH and I could experience the difference.

All these pieces have confirmed I needed to change.

Ladies ... listen to your gut. If if doesn't feel right it is probably not right for you.

Vicky

Suburbs

https://www.onclive.com/web-exclusives/updated-bre...

hi all. Hope this link works. It looks like radiation recommendations are evolving recently. I had a PCR and no evidence of cancer from my pathology report and radiation was not recommended. Now it seems it might have been ordered a year later. Similarly, perjeta is being prescribed for a full year with Herceptin. I had perjeta for 6 cycles. Standards of care are always changing.

LaughingGull and timetobebrave, I would like to think that your care team is doing the best for you in terms of the latest research and what is available. There is not much I can say to reduce your anxiety, but I am thinking of you both and hoping for the very best outcomes. Hugs

coachvicky

Laughing ...

"Hearing" your report I think increases anxiety. Try to stay calm until you have the COMPLETE paper copy in your hands.

Also, you wrote: I am traumatized by this guy. He is the person who didn't find my cancer three months before I found it myself.

I am sure your medical team does their best for you. I really believe those we see on this cancer journey work to save our lives. However, do you want a long term relationship with anyone that leaves you feeling this way?

Vicky

Suburbs

http://www.oncnursingnews.com/web-exclusives/nccn-...

Above is another link discussing radiation guidelines. Hope this helps.

PoseyGirl

I had pcr after chemo and had 30 rounds of radiation. I was diagnosed 2016

Jjewel

Laughing, just going to throw in my 2 cents here. Hopefully you won't have to deal with the Surgeon again. If you do, I would find another if at all possible. In the beginning I had one (Breast Surgeon) who was just awful to deal with. She did my biopsies and would have done my port placement & BMX but I just couldn't feel peace around her and so I found another. I really appreciate all my doctors now and the new Breast Surgeon I really like her a lot! We haveto deal with so much during this traumatic season, I'm so glad I listened to my gut and changed Surgeons. I haven't met the RO yet but I will use my 'peace over uneasy' feeling to either proceed with his advice or move on to another. I am so glad I trust and have been given comfort as well as excellent medical treatments through all of this so far.

LaughingGull

Thanks ladies.

I am reading the new guidelines and scheduling appointments with MO and RO and waiting for the complete report -and trying to remember to breath regularly in the meantime. Will keep you posted.

I am now regretting not having changed surgeon earlier, but what it's done it's done and as cupcake says hopefully I don't have to deal with him again. And if I need a surgeon in the future I will find another one.

Love and peace to all

LaughingGull

KimCee

Hi there everyone,

Suburbs, thanks for asking about me...I went through the mill.

After exchange surgery on March 15' btw still hate the new boobs, wish I didn't even bother, I got sick. I have great resistance but this knocked me down. Was misdiagnosed by PCP for two weeks, on strong antibiotics which were ineffective. Went to ER, had mycoplasma pneumonia, super bad, spent a week in the hospital. Discharged 4/18 but still SOB. Heart rate and BP shot up before discharge, now wearing a holter monitor for two weeks even though cardiologist doesn't think it is cardiac related. Have my echocardiogram next week. Missed my Herceptin 3 weeks ago. Doctors almost daily, ugh.

Seeing pulmonologist next Friday and hopefully will be released to go back to work. It ain't fun when you have to relax constantly vs. wanting to.

On a good note, if there is one...hair is growing back, I have a pixie lol, however, it's GRAY. Had my eyebrows tattooed and love them.

Welcome to all the newbies, happy you found us but sorry you are here. I read so many pages but can't remember individual issues so as I read, I prayed for the writer.

Missed you all xoxo. Oh and I start Aromasin today, yuck, side effect is thinning hair...just what we need

timetobebrave70

thank you.