Node Negative Isolated Tumor Cells

matsgirlie

Please Help! Just got my pathology report and even though it says Node Negative it also says Isolated Tumor Cells less than 1mm. AND "Probable lymphovascular invasion is present." This sounds scary and researching on the web just made it worse. Anyone else have this? Have not spoken to an oncologist yet so feeling completely terrified.

inks

I had a micromet and isolated tumor cells in my sentinel lymph node so a little different from yours. They may want to radiate the rest of the nodes if you did not get a full ALND. And perhaps depending on your age and other factors you might get radiation to chest wall and subclavicle. And of course they will figure out if you will need chemo or not. I read a study that said that LVI does not affect the prognosis of younger women that much (probably because younger women tend to have more aggressive cancer to begin with).I hope your doctor can put your mind at ease.

matsgirlie

oh wow! thank you so very much for your reply! what a scary C world we live in! How are you doing now? Thank you for all your information it is incredibly helpful. I am going down to Dana Farber is a few weeks for a second opinion pathology and to meet with oncologist down there. 2nd lumpectomy surgery on monday because they did not get clear margins! ugh. where are you at now with your treatment! hugs!

Lenn13ka

Dana Farber is the best! I had my second opinion there as well and still see my Doctor there 1/year. Their pathologist are great. I had extensive LVI with a positive node but a low Oncotype so no chemo. I got full breast radiation.  Are you getting the oncotype test? You should definitely ask about it. Good Luck ,

matsgirlie

Thanks for the reply! I am really glad Im getting a second opinion too! and so glad to hear you are happy down there! So, even though you had the LVI and positive node how come you still didn't need chemo? i am awaiting the results of my oncotype as we speak. what was your oncotype score? how are you feeling on the tamoxifen? i have to go back on monday for clear margins on lumpectomy. wish they had gotten it the first time.

inks

As you can see from Lenn13ka LVI and a positive node does not always buy you a ticket to chemo land. But even if you were to need chemo it is not all that terrible. I exercised in the beginning but then caught a nasty cold and was miserable because of the cold. At the moment I am halfway through rads and have been on Tamoxifen for 1.5 months without major complaints. I think once you see your doctors and get the second opinion they can ease your worries about LVI and +node. I have my fingers crossed so that you will not need chemo and hope that you get clear margins on the second try.

Lenn13ka

Matsgirl,

Because my Dr. at Dana Farber felt chemo would be of no benefit. I go to MGH and had at a 2/2 split on that decision so DF was the tie breaker for me. My Oncotype was 17 .. Just below the line. They felt radiation would deal with the LVI and even though I has a grade 2/3 tumor I had a mitosis score of 1. A lot of Dr.s don't get all hung up on LVI now that they have the Oncotype test. If you have a positive node there is a good chance you have LVI but often they don't pick it up in pathology. 

The pathologist at DF see everything and their pathology report was SO different from my first one so I am SO glad I went there. I still received treatment at my local MGH center but I go to my MO at DF as well.

Tam is not so bad. I do get brain fog, fatigue and hair thinning with it. I also see a naturopathic Dr. And have put together a great diet  / supplement program to help  with the Tam.

BrooksideVT

I had isolated tumor cells, ten of them.  Neither the surgeon, nor the RO, nor the MO, seemed the least bit concerned; apparently this does not skew the statistics at all.  Their joint opinion was that these cells were not capable of causing any problem.  My oncotype was toward the top of the low range, but still, chemo would have given me only about a 2-3% advantage, so I was very happy to avoid that.  Also, like Lenn13ka, my mitosis rate was one, and chemo works best on rapidly dividing cells. 

I guess the bottom line is we are all at risk for recurrence. It's our docs' responsibility to know where our greatest risks lie.  It is not only the MO who can speak to you about your pathology.  Your breast surgeon can help you put those issues into perspective. I'm sorry about your return to the OR, but you will be able to ask your surgeon about your concerns, face-to-face.  Chances are, a lengthy conversation won't exactly be on the schedule, but you can at least express your concerns, receive a brief response, and insist on a scheduled telephone call in a couple of days.

matsgirlie

hmm... interesting. i just looked back at my pathology report and i too, scored a mitotic count of "1." ok. so another question: do any of you get all weird about any ache or pain being bone or brain cancer? because i do!! is there anything they can do about it with my diagnosis? will just the tamoxifen get any rogue C cell out there? ugh. so many worries. BTW, I will be 41 in a couple weeks. I've had the lump for over a year and a half. was told but two doctors it was nothing and had a clear mammogram. went back a third time because of nagging voice in my head. was discovered via ultrasound and biopsy.

momand2kids

mats

I had ITC's as well-- no one on my team thought it was an issue--- my surgeon at MGH just called them "trash".... My oncotype was in the gray area-- so I decided to have chemo, with the support of MGH and Dana Farber.... I don't regret it....I sleep well at night!!! 

Yes, for a while every ache and pain seems like it could be something more serious.  But that eventually fades--you are in the thick of it right now--but you are also being watched carefully.  Sounds like you are in good hands--good luck with the second lumpectomy--- 

matsgirlie

momand2kids what was your oncotype score? and how long was everyone (that did chemo) on it? hairloss? was it awful?

bevin

Hi There, Not sure if it helps but the common Onco thoughts on micro mets and I believe Genomic Health who completed the OnxoDX test,  consider micro mets= node negative. I had a Onco score of 11, and had 3 onco opinions. One said I should have chemo as I was young, the other 2 said they'd feel comfy if I didnt have it. For ER+ cancer, tamoxifen is your friend and works great. 

An important question to ask your Onco is what is the ACTUAL benefit.  That being the % benefit  you will see when all the risks associated with it are factored in.  I was told that I would receive an actual benefit of 4%-5% which for me, was not a great percentage when I considered the long term side effects of chemo.

Good luck , I know this is a scary time and when you beging to see your oncologist and radiation doctor and have a plan in place for treatment you will feel more in control. As to the clear margins, I didnt have them either. My surgeon stated about 30% of people need a revision for margins. I guess if you have any DCIS associated with your cancer, its' in the ducts and they cant see it during surgery like they can the solid mass/tumor. Hence the need for frequent reexcisions in B/C.

Praying all goes well for you.

matsgirlie

thanks so much for info bevin! how many times did you have to have repeat surgeries to get clean margins! really hoping my surgeon gets them all tomorrow! if isolated tumor cells or micromets have spread beyond the lymph nodes will just tamoxifen get rid of them or is this something only chemo would do? did you ever worry that every ache you felt was bone cancer????? I do.

inks

Do not beat yourself up about having the lump for 1.5 years, a lot of women have had the same experience, I had my lump for 6 months. Chemo is not a "cure it all" and your doctor will decide if it will be helpful in your case, you need to wait for the OncotypeDX results and for your second opinion. Chemo is controversial as some people argue that the only benefit most women get from it is that it shuts down the ovaries, and there are way better options for doing that. Chemo also does not kill the cancer stem cells and some cancer cells develop resistance to chemo and can hide out for years. You can run your stats by CancerMath and see for yourself if chemo would give you a substantial survival benefit over doing just the hormonal therapy. And again chemo is not a walk in the park but is doable.

Everyone who has ever had cancer no matter how small will worry about metastases, you can choose to worry for the rest of your life or to life your life to the fullest. The worries will ease once you get your second surgery done and start your treatment.

There is also a whole thread of women with small low grade tumors who are premenopausal like you who are doing only the hormonal therapy Small low grade hormonal. If I am correct there was even a woman who did not have insurance while she was waiting for surgery so her doc put her on hormone therapy until she could secure the insurance and I believe her tumor shrunk while on hormone therapy. So do not underestimate hormone therapy.

I hope your surgery goes excellent on Monday and please do let us know how you are doing!

barbe1958

I have ITCs as well and a micromet in one node. I didn't do chemo or rads!! My cancer was ER+ and slow growing and wouldn't have reacted to chemo so why go through it?? There wasn't oncotype testing available in time here in Canada so that wasn't an option. I'm not on any AI's or Tamoxifen right now, but here's the neat part. IF I get a recurrence, my first line of defence will be Tamoxifen or Arimidex!!! Amazing, eh?? So you can see how powerful it really is. I didn't do rads as the tumour was at 6 o'clock on my left side right over my heart and lungs. I understand they have a new rads technique to avoid heart and lung damage, but it wasn't around when I had my cancer.

Yes, you will think every ache and pain is mets. It will drive you crazy until you start to trust your body again. Your body has failed you and you have lost trust. It's normal. Since my double mast I've had my thyroid totally removed and a pacemaker put in for heart issues. They really watch you once you've been diagnosed, so I think I've had better care. Things are taken care of quickly and you move to the front of the line for scans and surgeries.

As for the year and a half, breast cancer normally doubles in size every 180 days (thus the "wait and watch" approach some docs take) so you might have had a lump that wasn't even actually cancer that just developed cancer over time. If you had gotten scans done, the cancer might have been too small to register as a positive. So your timing was right on. Some of us carry our lumps for 8-10 years before they are big enough to be found. Remember, it all starts with ONE cell.

matsgirlie

thank you soooo much for your replies!!! i can't tell you enough how helpful they are to me!!! ok. so here is another question: my surgeon says lumpectomy + radiation is going to be better treatment for me than just masectomy. in my mind i've decided that if they do not get clean margins after tomorrow's second surgery than i am going to insist on masectomy. what does everyone else feel about this??? thanks for the support it means the world!!!

barbe1958

I didn't even find out I had cancer until the lumpectomy. I had told my surgeon (general surgeon) that if it came back positive I was going for a double mast. It was my third biopsy in 25 years and I was sick with the fear. It came back positive with "dirty margins" and he had already booked the surgery for the following week. No regrets at all. I was fed up. But, I was 50 at the time.

I had a general surgeon who did a MUCH better job than any breast surgeon I've seen! I had told him I was NOT going to do recon and he gave me a nice clean line. My friends who had breast surgeons were left with lumps and bumps (for "future" recon the breast surgeon hoped) even though they had said No!!!

momand2kids

mats

my oncotype was somewhere in the mid-20's--I think it was 26 or 27--which was honestly a surprise.... I had ILC, slow growing,, but there we were--- didn't take me long to decide to do chemo--- I did 4 treatments over an 8 week period.  I was able to work through chemo-I also have 2 young children-- so we also worked to keep their lives pretty normal.   I did chemo because based on the oncotype if I did the chemo, my % of possible distant recurrence was dropped by 50%--- I went from an 18% possibility to a 9%... and that was good data for me.

Yes, I lost my hair--- I actually had my head shaved when I got my wig..... and I wore the wig for about 6-7 months--- none of it was fun, but it was not awful....  ok, it was a little awful.... but it was bearable.  

But don't get ahead of yourself-- you may not need chemo.  My best friend from college (who also had bc) just called to tell me her sister who was dx a few weeks ago only needs a lumpectomy and radiation-- so you never know what can happen.  One step at a time--get the clear margins...then you can make the next decision.... 

Hair grows back-- for me I needed to know that I did everything I needed to do- and in consultation with my team.  When you are making decisions, be sure to ask your team "what would you advise if I was your sister/mother/wife?"  This always gets a quick and clear answer.   

Good luck tomorrow---- we will pray for clear margins......

matsgirlie

THANK YOU!!!!!!!!!!!!!

Lojo

hi,

I also had isolated tumor cells - the path report said <20. My surgeon and MO weren't concerned and treated it as node-negative. I had a low oncotype, so no chemo. I did, however, have close margins, so they recommended rads, which I finished about a month ago. Best

matsgirlie

Lojo what was your oncotype score? i should know mine soon. how come you didn't have a second surgery to get clear margins? im going in tomorrow to have that done. so frustrating. oh and how did the rads go? mine is on my left side so worried about it affecting my heart. ugh. so much to worry about.

Lojo

My score was 7. I had a MX because of the tumor size, location, shape and small breasts. My surgeon got clean margins, but they were close < 0.5 mm, plus there's research suggesting ILC in particular benefits from rads post MX. Mine was left side too, and they do a lot to prevent unnecessary rads to heart/lungs. My skin did break down at the end/after rads and I had about 7 unpleasant days, but not so bad during and I feel fine now (5wks post rads)

matsgirlie

wow! that is a low score! awesome for you to have all that behind you!!

matsgirlie

ok! so lots of good news! They got clean margins and my oncotype score came back as 13! So no chemo. I will need radiation and hormonal therapy (im guessing.) Phew!! finally some good news. now lets hope BRCA1/2 test comes back negative. jeesh. i feel like im barely out of the line of fire. let the battle continue!

barbe1958

SUPER news Matsgirlie!!!!!!!!!!!!!!

Delufox

hi matsgirlie, I also had an oncotype score of 13. Had my first rad today, with only 19 to go. No chemo. With all of the waiting, and stressing behind me, it finally seems like I can see the end to this. Congrats on clean margins and low score, isn't it wonderful to get good news?

matsgirlie

Thank you!! yes!! to finally hear good news is awesome!! However, still concerned about the Isolated Tumor Cells and "probable lymphvascular invasion."  Probable????? No one seems too concerned about this but I will be meeting with my oncologist on monday to discuss it further and ask if chemo would help because of this. I am also getting a second opinion on my pathology report down to boston at Dana Farber and will be meeting with their oncologist in a couple weeks. Between the two of them they should have me figured out! Also have to pass the BRCA test - so not out of the woods yet. Congrats Delufox on your low score and fighting the battle!! I'll feel better about my "good news" once ive talked to the oncologists! Hugs! Stay Strong!

inks

Yeah for no chemo! And rads are not too bad. LVI increases chances of local recurrence, so chemo would not help with that much. You could see if they will radiate the chest wall. Good luck with the second opinion!

Lenn13ka

DF told me rads would take care of LVI and I had extensive LVI on both MGH and DF pathology reading.

Good luck with your second opinion.

matsgirlie

Lenn13ka that makes me feel much better. hey, did you have a choice on which hormonal therapy you could have? some don't have the same side effects like hair thinning and weight gain. there is a great chart on here that shows the different side effects with each one.

Lenn13ka

I have a funny pathology ( ductal, lobular and micro papillary) and a real positive node so I will be on hormones for longer than 5 years according to both MO's. They both agree that I should take Tamoxifen for at least 2 years to build up my bones as I will be on an AI for awhile after that.

I am not a super fan of tamoxifen. I was on the Mylan brand for 6 months with no problems and am now on Watson with lots of side effects. I will stick it out the two years as I don't think the AI's will be any better.  I have not gained weight but I work at staying thin. My hair has stared to fall out though, which is a little depressing. I know some people have no issues so this is just me and You may have no problems.