Treatment for Triple Negative and very small tumor

Also, I was discharged as well by my oncocologist.  She said that I don't need her anymore.  I am followed closely by the Breast Clinic and my radiation oncologist, but never too closely in my book.

Louise,

I feel the same about the mastectomy, but radiation was tough for me.  Lots of problems with cellulitis, then lymphadema later on (still ongoing a year later), now I am having troubles with chronic shingles (just can't shake them).  I guess our T cell counts don't recover after radiation for 10-11 years!! I sometimes wonder if a mastectomy would have made life easier, but it is too late now to change!

Susan

Louise, my BS and my MO also said chemo would not offer enough benefit to me to be worth it.  I had a UMX because in addition to the IDC I had multifocal DCIS.  My MO does want me to take tamoxifen for 5 years even though my small IDC tumor was TN.  She said the tamoxifen would help prevent cancer in my remaining breast.  After doing some research I have decided not to take the tamoxifen.  I saw my regular physician recently and she thought in my case the benefit from tamoxifen would possibly not justify the risk of side effects. 

tnbc stage 1  with mastectomy 

chemo : CMF

why because I had chemo for fallopian tube cancer stage 3B  and doctor recommended

anyone else on CMF

Hi All,

I am reposting from another thread since it seems my cancer is moving me into the TRIPLE NEGATIVE category. 

 I've gone from a nice quiet 1.1 cm Stage 1, clean margins, 0/4 lymph nodes, to " Red Alert! Fire the Phasars! Mr. Sulu, we are under attack!" 

 My biopsy pathology says I am weakly ER positive, my tumor biopsy says I am weakly ER+, but my oncologist says staining is less likely to be right than the genes. Also Oncotype DX says weakly ER positve. BUT Mammaprint Symphony genetic tests say I am TRIPLE NEGATIVE. So....??? However the best case scenario in any event is that am only very weakly ER+ or just on the line between +/-  (Forgot to say: Negative for BRCA 1 &2).

Summary of my situation:

I am High intermediate  on Oncotype & High on Mammaprint. Worse than that, Mammaprint says I am Basal subtype & Triple Negative. Oncotype does not state subtypes. It says that I am slightly ER positive, not Triple Negative. My path report says I am slightly ER positive. 

I asked Mammaprint about this. Roughly the reply is that while many triple negatives are basal type, they are not "mutually inclusive". Mammaprint measures mRNA via microarray expression, a newer methodology capable of quantitatively measuring all copies of mRNA, while Oncotype measures via PCR (polymerase chain reaction). PCR is a good methodology, but it multiplies copies of the gene, which if you have a "mismeasurement" it would be multiplied. So both tests are good in different ways. 

So depending on which test I and my oncologist believe, I am either weakly ER positve OR Triple Negative & Basal Subtype! Flip a coin??? He's tending toward believing Mammaprint because I have a high proliferation rate & am Grade 3.

 The only slightly cheery news on Mammaprint is that Mammaprint says chemo could significantly make my disease free rate higher at 5 years. I am waiting to hear a reply from Mammaprint about what chemo was used to get that improvement. They may not even know. It could just have been reported as generic chemo, so your guess is good as mine. But it surely makes a difference. I am being told to take the Taxotere/Cytoxan regimen. But was that what worked to get a disease free rate significantly higher at 5 years? I do not believe all chemo reimens are the same. Some carry much higher risks.

Especially in light of the following report on the subtypes study:

According to the NY Times, Sept 23, 2012:

"The study’s biggest surprise involved a particularly deadly breast cancer whose tumor cells resemble basal cells of the skin and sweat glands, which are in the deepest layer of the skin. These breast cells form a scaffolding for milk duct cells. This type of cancer is often called triple negative and accounts for a small percentage of breast cancer.

But researchers found that this cancer was entirely different from the other types of breast cancer and much more resembles ovarian cancer and a type of lung cancer.

“It’s incredible,” said Dr. James Ingle of the Mayo Clinic, one of the study’s 348 authors, of the ovarian cancer connection. “It raises the possibility that there may be a common cause.”

There are immediate therapeutic implications. The study gives a biologic reason to try some routine treatments for ovarian cancer instead of a common class of drugs used in breast cancer known as anthracyclines. Anthracyclines, Dr. Ellis said, “are the drugs most breast cancer patients dread because they are associated with heart damage and leukemia.”

A new type of drug, PARP inhibitors, that seems to help squelch ovarian cancers, should also be tried in basal-like breast cancer, Dr. Ellis said.

Basal-like cancers are most prevalent in younger women, in African-Americans and in women with breast cancer genes BRCA1 and BRCA2." [I am none of these.]

Monday I am meeting again with my onc to ask loads of questions!

I am so confused. Gave all my information to my step-son who is a researcher in big pharma. He says the two tests both have high validity and the scream "get treatment now." But which treatment? 

Hap

HAPK:

Please ask your doctor to order the GenOptix / Aqua Technolgy test for you.  It is the newest test and will clearly assess whether you are indeed Triple Negative or not.  Here is the link to their site:  http://www.genoptix.com/aqua.html

You really must have clarity on your ER/PR status as there are very targeted chemo treatments for TNBC, and you want to make sure you are being treated for the right receptor status.

I too, through the initial IHC test, was reported as ER4% on the biopsy, but after the mastectomy, my Onc ran a test 2x to verify I was TNBC.  In doing so, he also thought I had enough of an ER+ to warrant the argument for Tamoxifen, but it was very very boderline. So he ran the GenOptix test which concluded that I am Triple Negative.  This test from GenOptix is brand new on the market, and was originally created because as much as 20% of BC patients may be classified with the wrong ER/PR status.  This test is considered extremely accurate.

My Onc described it as looking at a star, while other lights are on in the city.  The star is not as bright, but you know it's there.  But move yourself to the middle of nowhere, like the middle of the desert, where no city lights are on, and look at that same star.  You can see so much more detail and clarity in it.  

This test is designed for the exact situation you are in, when you are borderline or have conflicting results from different tests, etc.  

Just a thought, my surgery was on Aug 31st. My oncologist said I should start chemo within 12 weeks of surgery. Does that sound right to everyone who has done chemo right after a BMx. And the urgency is because it's Triple Negative? Right?

I would love to slow this down, but...

Hap

Inspired,

Wow, you moved fast. I thought I did, finding the lump and having surgery all the same month.

But no one even mentioned finding an oncologist until two weeks after my BMx. Then it was like, "well you might want to look into it" because at that point until I got the Mammaprint (Targetprint) no one knew I was Triple Negative even though I was only 1% ER+. They were all happy that I had a very small turmor, clean marigins, 0/4 lymph nodes (never mind the high proliferation rate or the weak Er+ or even the Grade 3!

So even though I may not want to start now, I guess I had better.  Good grief. What's next. Thank you for that heads up!

Hap

Inspired,

I kept thinking about Genoptix Aqua & wondering if it really was the same as Agendia's Blueprint which told me I was ER Negative.

I asked my stepson (a virologist with big pharma in England) what he thought. Sent him all the info I could find on it. He replied, "Just spoke to a couple of immunohisto-pathologists (about Welsh et al, 2011) and they thought this was a good discriminatory test. It must be worthwhile if it clarifies ER status, especially as it is looking at translated proteins rather than mRNA (which only infers protein translation)." That is, it's better than pathology reports and is also better than Oncotype and Mammaprint/Blueprint.

Mammaprint measures mRNA via microarray expression, a newer methodology capable of quantitatively measuring all copies of mRNA, while Oncotype measures via PCR (polymerase chain reaction). PCR is a good methodology, but it multiplies copies of the gene, which if you have a "mismeasurement" it would be multiplied. So both tests are good in different ways, but for specifically finding the difference between ER+ & ER-, Genoptic Aqua should be better (because it looks "at translated proteins rather than mRNA (which only infers protein translation").

So I asked my oncologist if we could order it (after I checked with my Medicare Advantage provider--it can be covered if there is medical necessity). He is ordering it--trying to anyway. (He had not heard of it, but also liked the info I gave him.)

I am for sure starting (TC) chemo next Monday. Figured there was too good a chance that I was Triple Negative and for sure I am Basal sub-type, so full speed ahead on chemo. But if I am NOT Estrogen Positive there is no point in doing 5 years of Hormone Blockers. So I want a tie-breaker, and thanks to you, I think I have found it. If it agrees with Agendia's Mammaprint/Blueprint (part of Symphony), then I am absolutely Triple Negative. Not a good thing, but at least I will know. However, if it disagrees, well, I will have to hedge my bets and do the Hormone Blockers. 

You would think that after all these decades, they would know more than they do! Women still are an unexplored continent. 

Thank you for mentioning Genoptix Aqua!

All the best, Kiernan

My daughter has TNBC. Is 12 weeks into chemo treatments. Taxol first drug. Starts Doxil this week. To all cancer patients may I recommend a good diet. Eat fresh vegetables and fruits, fish , chicken. No junk food and absolutely NO sugar. Cancer thrives on sugar. This has helped with feeling good when the chemo treatments cause fatigue, aches,etc. There has been no nausea and blood work good. Good food gives the " step ahead" dealing with chemo side effects. Best to all and my prayers are for success for everyone.

Update: I posted recently about getting my onc to order Genopticx Aqua to find out if I really Triple Negative or not. Well, I got results I really did not expect:

I have had 3 genetic tests (Oncotype, Mammaprint, & Genoptix Aqua).  I got 3 different sets of results:

• Oncotype           Pro Neg     Her2 Neg                 weakly ER Pos
• Mammaprint      Pro Neg     Her2 Neg                  weakly ER Neg
• Genoptix Aqua   Pro Neg     weakly Her2 POS         weakly ER Neg

I didn't trust Oncotype (too limited), so I asked for Mammaprint/Symphony. Only Mammaprint says that I am Triple Negative. The only reason I did the third test was because it sells itself as being a tie-breaker on whether or not a woman is ER+ or ER- (very significant for hormone Tx decisions). I didn't realize it would suddenly through out an anomolous reading. Out of two path reports & 3 genetic tests, HER2 never reared its head unitl Genoptix Aqua. 

At this point I am thinking that issues like my high (30%) proliferation rate, being a Basal subtype, and having a Grade 3 tumor are more important factors to consider in my Tx decisions than my genetic tests results. The genetic tests seem not ready for prime time. There seems to be no agreement on how these scores are arrived at. YET WOMEN ARE ASSUMING THAT THE RESULTS THEY ARE GETTING ON GENETIC TESTS ARE RELIABLE. Easy to assume since most people get just one test. But if everyone got more than one test and found that the results all disagreed? I think some stock prices would drop! Who can have confidence if the tests all come up with different results?

Just thought I would let people know. 

Hap

Thanks, Lisa

My onc thinks the weak HER2 reading is a red herring. He's keeps saying that they do two dimensional tests on a 3 dimensional tumor and get only part of the picture.

Honestly I 've never even heard of the FISH test because until now I never had any reason to look at or think about being HER2. The weak readings ER are actually super weak. So I am borderline for ER, but until now was clearly negative for HER2.

BTW, I am negative for BRCA 1&2. So supposedly I have a cancer I am genetically NOT supposed to have if I am Triple Negative. I am not young, 

I am 10 days into my second of four cycles of Taxotere/Cytoxan. My onc insisted because of my high proliferation rate, Grade3 tumor, and basal subtype. After everything I read I felt he was right.

I'm sorry your're not getting clear answers either. Maybe there just aren't any?

Hap

Hello HapK!  

Wow, you also?!  I too had 3 different answers, but all were TNBC, but close on all tests.  

My 3 tests all came with different answers, as well, and on the GenOptix test, I was a 10, and cutoff was 11 for ER+.  I questioned and questioned until I was exhausted! 

I've had the Fish Test/Standard Test on Excised Tumor/GenOptix/Oncotype DX.  I hit on all tests as TNBC, but always in close enough range to consider another test for validation.

My Onc mentioned some tests data are obtained by a manual count, while other tests are done by a computer.  GenOptix uses computer technolgoy on the entire slide, not a random sample.  It was difficult to me, because he mentions to me that I think too much like an Engineer.  I feel a number is either 100 or 0, an exact number must mean an exact result. But he said in science, you never reach 100% of an equation, you reach the mathematical closest match of decimal dot something or other.  It took me several sleeplessness nights to accept that a 10 was not an 11, and why am I not considered ER+ being just 1 point away.

In the end, I wore myself out and realized he was the Onc/Hematologist and I should trust his level of expertise.  He doesn't want to see me back in his office for years on end, any more than I want to go back ever.  

But I remember crying when he told me he had to pull me off Tamoxifen.  I was on it for 1 week, while GenOptix ran their test.  Before that, I had a very slight ER+ (4) and he felt I would perhaps benefit from Tamoxifen, but after GenOptix it was no-go, and then I questioned it and they did OncoTypeDx which confirmed TNBC.  

But like Lelela wrote, what do we do with these other cells?  It's hard moving forward when something is not 100% clear cut, I know!

I did finally move forward from this, but it took time.  I had to realize that what mattered was that I'm healthy now, I've changed my diet, I exercise 90 minutes a day and I've got a great opportunity to survive TNBC.  It is hard when you get conflicting answers.

It's rough some days, other days I don't worry. 

Have a great day - hope everyone is doing okay today!

Edited to add signature line: After breast cancer, it's Plan B (as follows): Low-fat, low sugar, fish, veggies, whole grains, fruits, water, green tea; 8 hours vigorous exercise weekly; and Metformin. If you would like info about Metformin to discuss with your Onc, please PM me.

Hap,

What's the article you read?  Can you send me a link?  Was it a medical article?  And how much Her2+ is considered bad?  

You know, don't let those articles worry you too much and don't forget to really rely on your team's interpretation as well.  

This Onc I went to for a 2nd opinion on the Tamoxifen (she is the one who ordered the OncoTypeDX test), she had this survival chart (for my particular case) and it showed the before and after % if I had been able to go on Tamoxifen.  For me, the difference between ER+ with Tamoxifen and ER- without Tamoxifen.  The variance of survival rate was 5%.  So what someone might call poor, might not look so poor to someone else.  I was delighted to see the difference had only changed 5% ... well, as delighted as someone can be in my shoes. but you know, I thought without Tamoxifen I'd be looking at a whole new ballpark.  It changed a bit, the %, and I want all the extra favorable %s I can get, but in the end it was showing a 5% difference for me.  So sometimes I try to look at things in the overall context, perhaps easier than pinpointing a direct number.  

To anyone who has a question on receptor status, consider asking your Onc to run a test using GenOptix Aqua Technology.

"GenOptix Site"

- Receptor status, borderline results