Triple Negative - No Chemo????

HackTown

My wife (age 49) was just diagnosed with TNBC with no lymphnode involvement. Her tumor showed signs of both IDC and DCIS. She had a full lateral mastectomy 3 weeks ago and has expanders in place in preparation for implants.

Her oncologist says she does NOT need any further treatment i.e., no chemo, because the size of the IDC was only 1.5 mm. The DCIS was 6mm.

As you can imagine she feels fortunate to have caught it early, yet very scared, since TNBS is agressive and it appears that the chance of reoccurance is high. She is inclined to do chemo despite her doctor's recommendation, as she doesn't want to leave anything to chance. However, she's afraid to do chemo, due to the damage it can do to her system.

The purpose of my post is to hear from others that have a similar diagnosis and hear your thoughts on whether to do Chemo vs. not.

Thank you in advance for particpating in my post.

HackTown

Double Whammy

No opinion

  I just know that estrogen blockers and Herceptin are not options and so chemotherapy is usually recommended. But she had a dinky tumor and was node negative???  I have no idea.   The bottom line is you and your wife do not feel comfortable with the advice of no chemo, so I strongly suggest you get a second opinion and that you get it from someone whose specialty is breast cancer, not a general oncologist. 

Good luck.

Suzanne

Puffin2014

second opinion

all my triple negative friends had chemo, I agree with Suzanne, worth getting a second opinion from an oncologist at a cancer center

 

linpsu

TNBC

I had TNBC in 2008 and had a left mastectomy.  My oncologist showed me all the percentages and it made no sense for me to have chemo or radiation due to the low percentage of it returning (I was stage 1).  But it returned in 2010, at stage 3C, under my mastectomy scar.  So at that point, i wished i had had chemo and/or radiation the first time around and maybe it wouldn't have reoccured.  In 2010 i had chemo first, then another mastectomy to remove the implant, lots more tissue, and 14 more lymph nodes, followed by radiation.  I am now almost 6 years out from my last diagnoses and doing well.  Feel free to PM me if you'd like more information.

Hugs,

Linda

twnkltoz

Definitely get a second

Definitely get a second opinion, as we can only guess. Maybe he feels confident they got it all? Chemo is a lot of hell to go through it you don't have to.

Ladylacy

Second Opinion

My sister was diagnosed with triple negative breast cancer 12 years ago.  She underwent chemo and radiation and then a lumpectomy.  She didn't want her breast removed so she opted for the lumpectomy.  They had to take more than planned but she has been cancer free since then.  Her doctor does follow her every 6 months due to her cancer being triple negative.

I would definitely get a second opinion.  My husband died from cancer recently and when first diagnosed we didn't go with a second opinion.  Something I regret very much to this day because I think maybe the outcome would have been different.  We did get a second opinion after being told he was clear but within 2 months he was having problems again and needed an emergency trach and second biopsy which showed the cancer had returned.  When referred to a specialist we were told the tumor never went away and surgery should have been done first because there was no spread to lymp nodes or any where else in his body.  So second and even third opinions should be gotten, my opinion.

Wishing you and yours peace and comfort.

joannstar

I'm TNBC Stage 1, too

I was diagnosed 8/19/10 (after 2nd lumpectomy to get clean margins) with Stage 1, IDC, Grade 3, No nodes I was 57 at the time. I believe that the final path report said that my tumor size was 1.6 cm, but had not spread to my nodes. I was advised since it was TNBC to do 6 rounds of chemo (T/C) and 33 rounds of Rads. I was told that although there were no followup meds, TNBC responds well to chemo so my doctor threw everything he could at it. Once I past the 3 year mark (now at 5.5 years), I was told that could relax a bit and that my chances of recurrance were no higher than others BC survivors.

I now see my onc every year and continue to get mamos every 6 months. My onc runs blood tests for tumor markers and does a through physical breast exam.

Good luck to you and your wife.

JoAnn

VickiSam

joannstar said:

I'm TNBC Stage 1, too

I was diagnosed 8/19/10 (after 2nd lumpectomy to get clean margins) with Stage 1, IDC, Grade 3, No nodes I was 57 at the time. I believe that the final path report said that my tumor size was 1.6 cm, but had not spread to my nodes. I was advised since it was TNBC to do 6 rounds of chemo (T/C) and 33 rounds of Rads. I was told that although there were no followup meds, TNBC responds well to chemo so my doctor threw everything he could at it. Once I past the 3 year mark (now at 5.5 years), I was told that could relax a bit and that my chances of recurrance were no higher than others BC survivors.

I now see my onc every year and continue to get mamos every 6 months. My onc runs blood tests for tumor markers and does a through physical breast exam.

Good luck to you and your wife.

JoAnn

Like so many

A second opinion is a MUST ....  please keep us posted 

Strength courage and HOPE for a cure

Vicki Sam 

camul

I agree with everyone here.

My orig onco did chemo in 2002.  Then left the practice.  His co-worker who took me on siad he completely overtreated me by having me get chemo when i was 1.97 cm on the tumor, he did chemo followinv a mastectomy because it started with a lumpectomy, didnt get clear margins when surgeon kept cutting more, realized a part had looped out, so had a mastectomy and because it was out of the tumor he felt it was aggressive and he re commended chemo. She said it was overkill, i would never get it back.  8 years later, i was stage iv.

I agreed with first onco bcuz i was on huge doses of hormone replacemen therapy and my onco score was aggressive and my gut feeling was, i needed chemo.  I have learned with this journeey to always vo with your gut feeling (or your wife's).  If you are not comfortable with an opinion get a new one.  

One thing i have learned though is how important it is to go to someone who specializes in breast cancer (or whatever  kind of cancer you have).  Because they usually only treat one or two cancers, they are on top of all the new treatments, and see the side effects of thee meds for that cancer, as well as see which ones tend o be more effective.

takingcontrol58

Hacktown- alternative to chemo for TNBC

I am from the uterine discussion board.
After being diagnosed with Stage 3 endometrial cancer (and removing all my female parts (hysterectomy),two months
later I moved to Stage IV metastatic, growing 34 NEW tumors (spleen, liver, rectum). Told I had four to six months to live.

My integrative oncologist put me on metformin after two chemo infustions of taxol/carbo. After the 3rd infusion
and one month on metformin, 88%of my tumors were gone. I had the remaining four infusions of Taxol/Carbo.
Still had 2CM tumors left after the chemo. I said no more chemo. WIthin 6 mos of starting the metformin, I was in remission
from a death sentence. Have had no chemo since then.

That was last August 2015. I remain in remission to this day. Since the day I started metformin, I have had no recurrences.
That seems to be what you most fear, as do we all.  Personally, since your tumors were so small and not life threatening,
I would avoid chemo at all costs if it was me. Chemo is poison.  An acquaintance of mine had her tumors double in size after
she got chemo for her TNBC. If you can try something else that is not toxic I would try it first. You can always get chemo.
I don't know why people rush to get chemo when it doesn't stop cancer.

I would definitely get a second opinion and find an oncologist who is a metformin supporter. Most won't. I think they want the
revenue from the chemo.  I think it is good your doctor doesn't want to give you chemo right now.  Maybe you should ask him
first about the metformin before getting a second opinion.

Metformin kills cancer stem cells which cause cancer and escape the chemo.  If you can take a simple pill (it is normally prescribed
for insulin reisistance-which I had-, diabetes and PCOS) and keep your cancer at bay versus taking poison, I would take the
metformin and see if it works for you in preventing a recurrence.  And the drug is cheap. Metformin has also had good results
with TNBC. Look up the many articles at http://www.pubmed.gov. It is the database of the national institutes of health.

Good luck
Takingcontrol58

 

twnkltoz

takingcontrol58 said:

Hacktown- alternative to chemo for TNBC

I am from the uterine discussion board.
After being diagnosed with Stage 3 endometrial cancer (and removing all my female parts (hysterectomy),two months
later I moved to Stage IV metastatic, growing 34 NEW tumors (spleen, liver, rectum). Told I had four to six months to live.

My integrative oncologist put me on metformin after two chemo infustions of taxol/carbo. After the 3rd infusion
and one month on metformin, 88%of my tumors were gone. I had the remaining four infusions of Taxol/Carbo.
Still had 2CM tumors left after the chemo. I said no more chemo. WIthin 6 mos of starting the metformin, I was in remission
from a death sentence. Have had no chemo since then.

That was last August 2015. I remain in remission to this day. Since the day I started metformin, I have had no recurrences.
That seems to be what you most fear, as do we all.  Personally, since your tumors were so small and not life threatening,
I would avoid chemo at all costs if it was me. Chemo is poison.  An acquaintance of mine had her tumors double in size after
she got chemo for her TNBC. If you can try something else that is not toxic I would try it first. You can always get chemo.
I don't know why people rush to get chemo when it doesn't stop cancer.

I would definitely get a second opinion and find an oncologist who is a metformin supporter. Most won't. I think they want the
revenue from the chemo.  I think it is good your doctor doesn't want to give you chemo right now.  Maybe you should ask him
first about the metformin before getting a second opinion.

Metformin kills cancer stem cells which cause cancer and escape the chemo.  If you can take a simple pill (it is normally prescribed
for insulin reisistance-which I had-, diabetes and PCOS) and keep your cancer at bay versus taking poison, I would take the
metformin and see if it works for you in preventing a recurrence.  And the drug is cheap. Metformin has also had good results
with TNBC. Look up the many articles at http://www.pubmed.gov. It is the database of the national institutes of health.

Good luck
Takingcontrol58

 

Congratulations on being in

Congratulations on being in remission! I'm glad you found something that worked so well for you. However, please don't tell people that chemo doesn't stop cancer, because for many people it absolutely works. Chemo completely eradicated my 8cm tumor. While it would be great if no one ever had to have chemo again, I don't think the vast majority of oncologists are poisoning their patients for fun and profit. Their goal is to cure cancer.

Thankfully, new research is being done all the time, and I predict there will be a safer, more pleasant, and more effective treatment protocol in just a few years.

KathyLQ

I choose no chemo and no radiation

I haven’t posted in quite a while.   I was diagnosed with BC in June 2010, so I’m approaching my 6 year mark.  Age 59 at time of diagnosis, I'm 63 today.

I had a 3cm tumor, invasive duct carcinoma, which I understand is 80% of all breast cancers.  Mine was positive for estrogen and progesterone receptor expressions, but indeterminant for Her-2/neu, and negative for Her-2/neu over-expression (I’m reading from the lab report).  I was told it placed me in Stage 2.   I had four lymph nodes removed but they were negative.

I choose to immediately have a full mastectomy, followed by reconstruction with a D.I.E.P. flap transfer, a breast lift on the other side, and follow up plastic surgery.

I initially consulted with four different oncologists and two radiologists. All advocated chemotherapy and radiation of my chest wall.   I did a ton of my own study, and I choose to do neither.  My job was “computer analysis and programming”, and I simply could not face any possibility of chemo brain.   And years back, I read a great book “The Conquest of Cancer”, written by the late Virginia Livingston-Wheeler, and did believe her analysis of how to treat Cancer, she believed in boosting the immune system.

I did take two different aromatase inhibitors for about 15 months, both caused such awful side effects with joint aches and severe skeleton/nerve pain, that I quit those. 

Of course, I always say I have a ‘monkey on my back’.   You just never know the future.   However, due to a bladder infection I just had, and an allergic bloating reaction to the antibiotic given me, I had a complete head to pelvic CT Scan, and it came back completely clear.

 

So I feel very lucky today, and I’ll keep trying to stay as healthy as I can.

Jpierce

TNBC finished with chemo and radiation

Dear Hacktown,

I agree with the others about getting a second opinion. You should feel comfortable with your team and the approach they recommend. I was diagnosed with stage IIB triple negative, IDC. My doctors recommended chemo and radiation after my lumpectomy. While chemo was difficult at the time, it has been three months since my last treatment and I'm feeling more and more "normal" every day. I was told that since my cancer was aggressive that it would respond well to chemo since chemo attacks fast growing cells (a silver lining?). 

If if you are like my husband, reading up on everything he possibly could, be careful about going down the Internet rabbit hole. You will have many people offering advice and telling you horror stories. Seek out knowledgable sources and act on what makes sense to you. 

I wish you both the very best.

Julia

Losa

TNBC and chemo

Hi, my first time on the boards.  Just wanted to share my experience for HackTown.  I was diagnosed with TNBC April 2015. Had bilateral mastectomy, sentinel node biopsy, clear nodes, IDC .6 cm.  I underwent 8 rounds of dose dense chemo - CMF.  I was treated at MSKCC.  

Losa

HackTown

my best wishes for your wife's speedy recovery.

 

Wabbitt

Confusion

I love this site but I get more confused about what is best.

I had bil mast on the 25th.  Microinvasive DCIS ..tumor size .06. Neg to lymph node. HER2 - neg

Margins clear overall score 3 (not sure what that means but sounds good)

Here's my dilema, at first follow up surgeon's PA was thrilled at how nothing involved, great progress and said I would not have to do any Tamoxifen, chemo or radiation.  They called back after discussion with surgeon and would like me to go on Tamoxifen only from the stand point that one cell could always have gotten away even though the invasiveness was so small.  I don't understand the turn around, are they just going through the normal motions?  Is it really necessary?

I am going to get a second opinion from an oncologist. 

What has been others experience on Tamoxifen or other estrogen blockers.  I all ready have osteoporosis and have been post menapauesal for over 20 yrs.  I am 61.

 

KathyLQ

Wabbitt said:

Confusion

I love this site but I get more confused about what is best.

I had bil mast on the 25th.  Microinvasive DCIS ..tumor size .06. Neg to lymph node. HER2 - neg

Margins clear overall score 3 (not sure what that means but sounds good)

Here's my dilema, at first follow up surgeon's PA was thrilled at how nothing involved, great progress and said I would not have to do any Tamoxifen, chemo or radiation.  They called back after discussion with surgeon and would like me to go on Tamoxifen only from the stand point that one cell could always have gotten away even though the invasiveness was so small.  I don't understand the turn around, are they just going through the normal motions?  Is it really necessary?

I am going to get a second opinion from an oncologist. 

What has been others experience on Tamoxifen or other estrogen blockers.  I all ready have osteoporosis and have been post menapauesal for over 20 yrs.  I am 61.

 

Tamoxifen and estrogen blockers

Wabbitt,    

    I understood Tamoxifen was targeted for women before menapause, and estrogen blockers after menapauesal.    Read up on the side effects of both.

I was advised to take Femara and did for about 5 months.   Joint aches became too much and so my oncologist switched me to Arimidex.   In about the same amount of time, I begin having back skeletal pains in addition to joint pains.   My lower back pain became so severe, I went to a orthopedic MD trained in pain management.  He did a MRI, which confirmed I had a nerve in my lower back touching the background and causing my severe back pains.   Pains also radiated down my left leg.   He told me it would never get better, I'd be on pain meds the rest of my life.   Very depressing.   I could no longer sit in a chair most of the day to do my job.   I worked from home somewhat, laying in a recliner and taking Tramadol to relieve my pain.

Somehow in this mess I was in, I was so fed up with the meds I was taking, I stopped taking the Arimidex.   And about 3 months later, I saw an improvement, less pain in my back.   Eventually the constant lower back pain was gone, I then knew the Arimidex was the cause.    Back to the oncologist, who said, 'yeah, sometimes we have women who experience these sorts of side effects'.  He said he'd switch me to Tamoxifen, which I took slightly less than a year.

I found doing research so exhausting, but I also knew 10 and 15 minute doctor appointments were not giving met the answers.  None were pointing me to clinical studies which justified their 'medicine'.   I read about Tamoxifen's side effects which could be 1) 'blood clots in large veins', (I sometimes was getting leg pains), 2)  cateracts (I got cateracts at a relatively young age, and so did another woman my age at my local support group), 3) cancer of the uterous, or 4) stroke (I have a family history of stroke).   So I came to a decision... bad side effects?  Or go it alone and try to boost my immune system.   It wasn't a hard decision... I didn't want to live in a recliner.   

For example, I now take DIM (Diindolylmethane)   I actually found the clinical study at UC Berkeley which showed the positive results of DIM fighting against cancer.    "Diindolylmethane is formed in the body from plant substances contained in “cruciferous” vegetables such as cabbage, Brussels sprouts, cauliflower, and broccoli. Scientists think these vegetables may help to protect the body against cancerbecause they contain diindolylmethane and a related chemical called indole-3-carbinol."

I take extra Vitamin A (immune booster), and curry powder as it helps prevent cancer.

But none of us have crystal balls..

You might read this site:   http://www.rense.com/general72/cancer.htm

I've handed out quite a few copies of Dr. Virigina Livingston-Wheeler's book, "The conquest of cancer" over 35 years.  I always use to think, if I ever got cancer, I'd be in her clinic in a minute... but she passed away 20 years before my diagnosis.

cinnamonsmile

Wabbitt said:

Confusion

I love this site but I get more confused about what is best.

I had bil mast on the 25th.  Microinvasive DCIS ..tumor size .06. Neg to lymph node. HER2 - neg

Margins clear overall score 3 (not sure what that means but sounds good)

Here's my dilema, at first follow up surgeon's PA was thrilled at how nothing involved, great progress and said I would not have to do any Tamoxifen, chemo or radiation.  They called back after discussion with surgeon and would like me to go on Tamoxifen only from the stand point that one cell could always have gotten away even though the invasiveness was so small.  I don't understand the turn around, are they just going through the normal motions?  Is it really necessary?

I am going to get a second opinion from an oncologist. 

What has been others experience on Tamoxifen or other estrogen blockers.  I all ready have osteoporosis and have been post menapauesal for over 20 yrs.  I am 61.

 

Wabbitt

I think it would be a good thing for you to sit down with your pathology report with an oncologist so you understand everything on it.  Also, reading up on the basics of cancer would be good as well (as long as you can read it without getting yourself all worked up). The American cancer society has good solid information on the basics of cancer at this website link: http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-signs-symptoms

 

sonicboom

KathyLQ said:

Tamoxifen and estrogen blockers

Wabbitt,    

    I understood Tamoxifen was targeted for women before menapause, and estrogen blockers after menapauesal.    Read up on the side effects of both.

I was advised to take Femara and did for about 5 months.   Joint aches became too much and so my oncologist switched me to Arimidex.   In about the same amount of time, I begin having back skeletal pains in addition to joint pains.   My lower back pain became so severe, I went to a orthopedic MD trained in pain management.  He did a MRI, which confirmed I had a nerve in my lower back touching the background and causing my severe back pains.   Pains also radiated down my left leg.   He told me it would never get better, I'd be on pain meds the rest of my life.   Very depressing.   I could no longer sit in a chair most of the day to do my job.   I worked from home somewhat, laying in a recliner and taking Tramadol to relieve my pain.

Somehow in this mess I was in, I was so fed up with the meds I was taking, I stopped taking the Arimidex.   And about 3 months later, I saw an improvement, less pain in my back.   Eventually the constant lower back pain was gone, I then knew the Arimidex was the cause.    Back to the oncologist, who said, 'yeah, sometimes we have women who experience these sorts of side effects'.  He said he'd switch me to Tamoxifen, which I took slightly less than a year.

I found doing research so exhausting, but I also knew 10 and 15 minute doctor appointments were not giving met the answers.  None were pointing me to clinical studies which justified their 'medicine'.   I read about Tamoxifen's side effects which could be 1) 'blood clots in large veins', (I sometimes was getting leg pains), 2)  cateracts (I got cateracts at a relatively young age, and so did another woman my age at my local support group), 3) cancer of the uterous, or 4) stroke (I have a family history of stroke).   So I came to a decision... bad side effects?  Or go it alone and try to boost my immune system.   It wasn't a hard decision... I didn't want to live in a recliner.   

For example, I now take DIM (Diindolylmethane)   I actually found the clinical study at UC Berkeley which showed the positive results of DIM fighting against cancer.    "Diindolylmethane is formed in the body from plant substances contained in “cruciferous” vegetables such as cabbage, Brussels sprouts, cauliflower, and broccoli. Scientists think these vegetables may help to protect the body against cancerbecause they contain diindolylmethane and a related chemical called indole-3-carbinol."

I take extra Vitamin A (immune booster), and curry powder as it helps prevent cancer.

But none of us have crystal balls..

You might read this site:   http://www.rense.com/general72/cancer.htm

I've handed out quite a few copies of Dr. Virigina Livingston-Wheeler's book, "The conquest of cancer" over 35 years.  I always use to think, if I ever got cancer, I'd be in her clinic in a minute... but she passed away 20 years before my diagnosis.

stopped taking meds

I too stopped taking meds. There is more of a risk of uterine cancer than blocking further breast cancer.

That is what the documentation that comes with the meds says, anyway.

I suppose if I had a hysterectomy, I wouldn't have to worry about it, but even with estrogen and progesterone positive breast cancer, my oncologist said that insurance won't pay for it because it isn't medically necessary.

lcolliob

T H A N K Y O U !!!

twnkltoz

God bless you and thanks so much for your comment. I have TNBC and I although I believe I will beat it, I still am nervous about the Chemo that is upcoming next week. This has been a shocking, uphill battle and the positivity and encouragement helps out so much because it's hard for others to understand what one with Cancer feels unless they themselves have had it. Again, thank you so much. I really appreciate it!