Newbie! Tiny 1.7 mm triple negative w/amended lymph report needs help choosing right treatment plan

Luv1pug

Hi all,

 My best friend recommended this site as a resource for making a huge decision in the next couple days. You guys helped her through a very rough ovarian cancer treatment. She suggested that you may help me too. This site looks great! I need to decide this weekend which treatment plan to go with as I am scheduled to begin radiation process on Tues. 3/24 unless we go the chemo route.

 I have triple negative cancer with a tiny 1.7 mm tumor removed via lumpectomy along with  6 cm of DCIS. Lymph nodes were clear but then amended to "isolated tumor cell clusters identified via immunohistochemical stains only." Then "immunohistichemical study of CK7 shows a single cluster of 5-7 epithelioid cells which are CK7 positive." These were found when pathhologist used stain on one deep section he had a "hunch" about. Ironically, this staining technique is not considered part of criteria for diagnosis. According to guidelines, this staining technique is a non-guideline factor. To me, this puts a new twist on the decision making--or am I thinking incorrectly? International guidelines indicate chemo is minimally effective for trip neg under 5 mm. Thus my quandary. What is the right decision?

Recommendation is radiation only, but doctor would support chemo if I was more "comfortable" with that treatment. (Can chemo really be comfortable?) Another doctor says all trip neg patients have chemo. Is there anyone here that has had such a tiny amount of triple negative like mine? If so, what treatment did you have? What results? Any informed advice is greatly appreciated. No one wants chemo but no one wants cancer either. What decision is right? HELP!!!

 I would greatly appreciate any help and hope one day I too, can help other survivors.

 Thank you in advance!

Puffin2014

such a dilemma

I'm so sorry you find yourself in such a dilemma. I did not have triple negative but I have friends who did. I know treatment options are limited with triple negative and thought all triple neg got chemo. I haven't heard about a tumor having to be a certain size before chemo was effective, though I know it's also supposed to work better on cells that are rapidly growing and maybe the line of thought is that if it's a tiny tumor it's not made up of rapidly growing cells. Triple neg has such a high reoccurence rate I think I'd go for the chemo and take my chances with the chemo. Chemo is no picnic, but it's do-able. Drs have good meds for side effects, I had no trouble with nausea or vomiting, fatigue and muscle weakness were my major problems. My last chemo was Sep 18 and I'm back to my normal strength now.

Also check out www.breastcancer.org for information. It's a site my onc recommended as having reputable info. It has excellent educational information and has an extensive list of topic specific discussion forums. Check out their triple negative forums and see if anyone there can provide any answers.

Good luck in your search for answers and keep us informed how you're doing.

Treecy1106

Hi Luv

I completely understand and when I was first diagnosed my 2 tumors were sized below 2cm but by the time of my surgery they were above 2cm. With TNBC we take NO chances. It is a very aggressive form of BC. With that in mind if I were you.....I would take every precaution available. 

With any form of cancer we all need ro be our best advocates and God knows I never wanted to do chemo but looking back I am sooo happy I did. 

We do it to also get rid of any micro cells hanging around that could develop into another problem. When we get operated on or have a biopsy done we always run risks of spreading bad cells around.

I have done so much research on this. Please take a stand of caution and go with your gut! Have faith and stay positive

 

Hugs

Patrice

Luv1pug

Puffin2014 said:

such a dilemma

I'm so sorry you find yourself in such a dilemma. I did not have triple negative but I have friends who did. I know treatment options are limited with triple negative and thought all triple neg got chemo. I haven't heard about a tumor having to be a certain size before chemo was effective, though I know it's also supposed to work better on cells that are rapidly growing and maybe the line of thought is that if it's a tiny tumor it's not made up of rapidly growing cells. Triple neg has such a high reoccurence rate I think I'd go for the chemo and take my chances with the chemo. Chemo is no picnic, but it's do-able. Drs have good meds for side effects, I had no trouble with nausea or vomiting, fatigue and muscle weakness were my major problems. My last chemo was Sep 18 and I'm back to my normal strength now.

Also check out www.breastcancer.org for information. It's a site my onc recommended as having reputable info. It has excellent educational information and has an extensive list of topic specific discussion forums. Check out their triple negative forums and see if anyone there can provide any answers.

Good luck in your search for answers and keep us informed how you're doing.

Thank you

Thanks so much for your insight and advice. I will look up breastcancer.org again and spend a little more time there. Glad to hear you are on the mend!

It's so hard to know what's right. My doc showed me international guidelines and tnbc is clearly shown to recommend chemo only if over 5 mm. But as you've said and I've learned, it is an aggressive cancer that likes to travel and recurr. Almost all references I've read mention no size. They just say treatment is chemo. yet my doc is highly reputable. He says chemo will only help 2 out of 100. He also says 1 out of 100 will have adverse effects from chemo.

WHAT in the wolrd do I do? Feeling very undecided. But your insight and any others I can find is so valuable to me. I'm more intersted in real people than guidelines. Thank you again for your insight. I'm doing a lot of praying this weekend.

 

 

Luv1pug

Treecy1106 said:

Hi Luv

I completely understand and when I was first diagnosed my 2 tumors were sized below 2cm but by the time of my surgery they were above 2cm. With TNBC we take NO chances. It is a very aggressive form of BC. With that in mind if I were you.....I would take every precaution available. 

With any form of cancer we all need ro be our best advocates and God knows I never wanted to do chemo but looking back I am sooo happy I did. 

We do it to also get rid of any micro cells hanging around that could develop into another problem. When we get operated on or have a biopsy done we always run risks of spreading bad cells around.

I have done so much research on this. Please take a stand of caution and go with your gut! Have faith and stay positive

 

Hugs

Patrice

I appreciate your comments

Thanks Patrice for sharing what happened to you and what you've learned. Everything I've read about TNBC describes it as fast growing and aggressive. At first I felt very fortunate to have caught this so early, but I may actually have been better off if it was over 5 mm so they wouldn't leave it as my call. I just keep thinking of my research that says it is most responsive when it's small. So wouldn't chemo give me the best chance to rid it completely? But if so, why are doctos not recommending it? So hard to understand.

With two tumors close to 2cm each, it was clear that chemo was the right answer for you. I would have done chemo as well. But I have one tumor that is 1.7 mm, not cm. It is tiny. I will be doing radiation for sure. I wonder if that kills tnbc?

Need to keep researching and hope I get more responses. Every one helps to give me more info for consideration.

I really appreciate your insight. Every bit is valuable to me. Thank you!

Desmonds1

Luv1pug said:

I appreciate your comments

Thanks Patrice for sharing what happened to you and what you've learned. Everything I've read about TNBC describes it as fast growing and aggressive. At first I felt very fortunate to have caught this so early, but I may actually have been better off if it was over 5 mm so they wouldn't leave it as my call. I just keep thinking of my research that says it is most responsive when it's small. So wouldn't chemo give me the best chance to rid it completely? But if so, why are doctos not recommending it? So hard to understand.

With two tumors close to 2cm each, it was clear that chemo was the right answer for you. I would have done chemo as well. But I have one tumor that is 1.7 mm, not cm. It is tiny. I will be doing radiation for sure. I wonder if that kills tnbc?

Need to keep researching and hope I get more responses. Every one helps to give me more info for consideration.

I really appreciate your insight. Every bit is valuable to me. Thank you!

Good luck with your

Good luck with your research-

i was not triple negative but is there a way to reach out to another medical opinion to help you decide? Ie MD Anderson? Mayo? Boston.... 

 

Hugs

susan

Luv1pug

Desmonds1 said:

Good luck with your

Good luck with your research-

i was not triple negative but is there a way to reach out to another medical opinion to help you decide? Ie MD Anderson? Mayo? Boston.... 

 

Hugs

susan

Thanks

Thanks Desmonds, another opinion makes the most sense, you're right. And I should be able to do that via phone and by sharring pathology reports. Hopefully itt won't take too long.

morgamed

Luv1pug said:

Thanks

Thanks Desmonds, another opinion makes the most sense, you're right. And I should be able to do that via phone and by sharring pathology reports. Hopefully itt won't take too long.

Follow your gut

it will never let you down.  I had breast cancer and the first Dr. wanted to do 4 months of chemo before doing anything.  I left there and immedictly went to aother Dr and told him I wanted a mastectomy and as qucik as he could do it.  For me I knew I wouldn't do chemo or radiation.  I got lucky and once we got the bios back I was cancer free then the pet ct scan came back all good. so I followed my gut.  You'll be in my prayers that you find your path you want to follow.

 

 

Lilly9

morgamed said:

Follow your gut

it will never let you down.  I had breast cancer and the first Dr. wanted to do 4 months of chemo before doing anything.  I left there and immedictly went to aother Dr and told him I wanted a mastectomy and as qucik as he could do it.  For me I knew I wouldn't do chemo or radiation.  I got lucky and once we got the bios back I was cancer free then the pet ct scan came back all good. so I followed my gut.  You'll be in my prayers that you find your path you want to follow.

 

 

I am sorry you're having to

I am sorry you're having to make such a hard decision in a short period of time.  It's hard enough to hear you have cancer period.   Please let us know what you decide.  Prayers are with you.

joannstar

I did chemo for TNBC

When I was first diagnosed as DCIS, I was told just radiation. After the 2nd lumpectomy to get clean margins, the staging came back as Stage 1, Grade 3, TNBC, 0N. I was advised strongly to have chemo before radiation. My cancer was 1.6cm and no nodes, but because of TNBC, I did 6 rounds of T/C and then 33 rounds of rads. My husband of 4 months told me later, that he would have been upset had I refused the chemo (he'd lost his first wife 10 years early from a drug interaction of her meds). I put my trust in my onc and did what he said.

Fast forward to 4.5 years later, I'm glad I went through all of the treatment. So far I am NED!! I was told that TNBC responds well to chemo and if it recurs, it is usually within the first 3 years.

The question that I grappled with is: If I do not do chemo and have a recurrance, how will I deal with that fact that I didn't do all that was recommended?

Good luck with your dicision...it is a hard one to make.

Hugs,

JoAnn

 

GlowMore

joannstar said:

I did chemo for TNBC

When I was first diagnosed as DCIS, I was told just radiation. After the 2nd lumpectomy to get clean margins, the staging came back as Stage 1, Grade 3, TNBC, 0N. I was advised strongly to have chemo before radiation. My cancer was 1.6cm and no nodes, but because of TNBC, I did 6 rounds of T/C and then 33 rounds of rads. My husband of 4 months told me later, that he would have been upset had I refused the chemo (he'd lost his first wife 10 years early from a drug interaction of her meds). I put my trust in my onc and did what he said.

Fast forward to 4.5 years later, I'm glad I went through all of the treatment. So far I am NED!! I was told that TNBC responds well to chemo and if it recurs, it is usually within the first 3 years.

The question that I grappled with is: If I do not do chemo and have a recurrance, how will I deal with that fact that I didn't do all that was recommended?

Good luck with your dicision...it is a hard one to make.

Hugs,

JoAnn

 

TNBC...

Pretty sure if I had not done the chemo I would not be here...however my 19 lymph nodes taken at the time of my Lumpectomy showed 6 had cancer.............so I did not have to make your decision....just had to do the chemo and radiation.    That was 13 years ago.       Prayers for Strength and Courage and please let us know what you decide.

camul

Welcome to this site.
Unfortunately, even if you have a 'tiny' cancer it is still cancer. I didnt have tnbc, am er, pr, positve. I started as stage 1, had mast. and chemo, which one onco said I wwas over treated. Glad I went with my gut feeling and the onco who was reccommending chemo. He based it not on the size, but on the grade (3). I got 8 1/2 years clear, and almost 5 yrs ago mets.
Be as aggressive as you feel is right. I would throw as much at it as I cna the first time! Remember 70% never have a recurrance in their lifetime, which was why I went the aggressive therapy rout the first time.
Wish you all the best.
There are no set answers as everyones body reacts differently.
Hugs,
Carol

corey50

choosing right treatment plan

I did not have tripe negative bc, so I'm not well advised in that area, but I would definitely get the advice/opinion of the three doctors who should be taking care of you. Your oncologist, obviously, but also your breast surgeon and your radiation oncologist should be able to give you some advice and input. You said you are definitely getting radiation, but if you haven't met with a radiation oncologist yet I suggest you do that and get their opinion. You are right, 1.7 mm is a tiny tumor and your dr probably just wants to spare you the side effects of chemo if you don't need it, but the decision is yours to make. 

Did you have the oncotype test done? The Oncotype DX test is a genomic test that analyzes the activity of a group of genes that can affect how a cancer is likely to behave and respond to treatment. The Oncotype DX is used in two ways:

• to help doctors figure out a woman’s risk of early-stage, estrogen-receptor-positive breast cancer coming back (recurrence), as well as how likely she is to benefit from chemotherapy after breast cancer surgery
• to help doctors figure out a woman’s risk of DCIS (ductal carcinoma in situ) coming back (recurrence) and/or the risk of a new invasive cancer developing in the same breast, as well as how likely she is to benefit from radiation therapy after DCIS surgery.

this would just be another piece of information for you and your dr.s to use to make a decision. Whether or not to have chemo is a very hard decision to make, but find out as much as you can, read alot. 

Wishing you good health. 

Puffin2014

corey50 said:

choosing right treatment plan

I did not have tripe negative bc, so I'm not well advised in that area, but I would definitely get the advice/opinion of the three doctors who should be taking care of you. Your oncologist, obviously, but also your breast surgeon and your radiation oncologist should be able to give you some advice and input. You said you are definitely getting radiation, but if you haven't met with a radiation oncologist yet I suggest you do that and get their opinion. You are right, 1.7 mm is a tiny tumor and your dr probably just wants to spare you the side effects of chemo if you don't need it, but the decision is yours to make. 

Did you have the oncotype test done? The Oncotype DX test is a genomic test that analyzes the activity of a group of genes that can affect how a cancer is likely to behave and respond to treatment. The Oncotype DX is used in two ways:

• to help doctors figure out a woman’s risk of early-stage, estrogen-receptor-positive breast cancer coming back (recurrence), as well as how likely she is to benefit from chemotherapy after breast cancer surgery
• to help doctors figure out a woman’s risk of DCIS (ductal carcinoma in situ) coming back (recurrence) and/or the risk of a new invasive cancer developing in the same breast, as well as how likely she is to benefit from radiation therapy after DCIS surgery.

this would just be another piece of information for you and your dr.s to use to make a decision. Whether or not to have chemo is a very hard decision to make, but find out as much as you can, read alot. 

Wishing you good health. 

tumor too small for oncotype

I was told the tumor had to be at least 1 cm before they can do the oncotype testing, otherwise there isn't enough of a sample to send in.

joannstar

corey50 said:

choosing right treatment plan

I did not have tripe negative bc, so I'm not well advised in that area, but I would definitely get the advice/opinion of the three doctors who should be taking care of you. Your oncologist, obviously, but also your breast surgeon and your radiation oncologist should be able to give you some advice and input. You said you are definitely getting radiation, but if you haven't met with a radiation oncologist yet I suggest you do that and get their opinion. You are right, 1.7 mm is a tiny tumor and your dr probably just wants to spare you the side effects of chemo if you don't need it, but the decision is yours to make. 

Did you have the oncotype test done? The Oncotype DX test is a genomic test that analyzes the activity of a group of genes that can affect how a cancer is likely to behave and respond to treatment. The Oncotype DX is used in two ways:

• to help doctors figure out a woman’s risk of early-stage, estrogen-receptor-positive breast cancer coming back (recurrence), as well as how likely she is to benefit from chemotherapy after breast cancer surgery
• to help doctors figure out a woman’s risk of DCIS (ductal carcinoma in situ) coming back (recurrence) and/or the risk of a new invasive cancer developing in the same breast, as well as how likely she is to benefit from radiation therapy after DCIS surgery.

this would just be another piece of information for you and your dr.s to use to make a decision. Whether or not to have chemo is a very hard decision to make, but find out as much as you can, read alot. 

Wishing you good health. 

Oncotype test not for TNBC

The Oncotype test is only given for early stage Estrogen Positive BC.

While you can get some good information on the internet, there is also a lot mis-information. Always check with your doctors.

JoAnn

Lexysf

Just Diagnosed

Hello Luv,

i hope you're doing well.

i'm in the same situation as you are. i had lumpectomy 6/16 and was diagnosed with dcis with 1.7mm micro invasion, triple negative.  rad onc recommended 6wks radiation But med onc says no need chemo but if i prefer to have chemo he would support my decision.  do you mind telling me if you went ahead with the chemo? I am having a hard time deciding because I'm worried about the side effects and the dr told me that the chemo would help me by only 1%.

 

RMK2552

Hi,

I have exact same situation and want to know what treatment. My tumor TNBC is 0.4mm and per the standards, no chemo or radiation required.

TNBC, Single breast

Age 70

0.4cm (4mm)

Lymph nodes- All negative (3 tested)

Surgery- Left mastectomy.

MRI, CT- nothing found

Per oncologist: I do not need radiation nor chemo as the tumor is less than 5mm which is border line for chemo.

Although no chemo is good sign, i am just worried and am looking for similar survivors. What about reoccurrence factor?.

What was your outcome and treatment. May I have more details