TRIPLE POSITIVE GROUP

TriplePHtown

Does anyone know if having a low red blood count (around 2.5) causes any surgical issues?

SpecialK

cowgirl - here is a link that explains the NCI center concept and gives some stats, but essentially NCI is a rigor test - these are predominantly university based and research oriented institutions, treat large numbers of patients, and generally have cutting edge technology and up-to-date practices.

https://www.cancer.gov/research/nci-role/cancer-centers

triple - what is your hemoglobin? Has your surgeon weighed in on a minimum RBC and Hgb prior to surgery?

Cowgirl13

Thank you SpecialK. I have sent her the information.

PoseyGirl

Hi Laughing Gull,

I was diagnosed at age 47'and had my ovaries out at 48. My MO didn't seem to express any strong opinion either way, so I felt I had to take charge. I was actually a bit annoyed that she didn't seem to be any voice of authority on the matter. I decided I wanted this based on what I was reading as alluded to by SpecialK. It seemed that AI's outperform Tamoxifen overall for our subtype. I'm aware of the risks to my body in removing my ovaries, but to be honest, I have felt that not one single hoop in this treatment circus has offered 100 percent benefit and zero risk. I decided to throw the book at it. The fact that different MO's have differing opinions basically proves to me that the jury is out on this matter. So far, my heart has been considered very strong, but I did have a grandmother with osteoporosis. So needless to say, this whole journey has felt like one giant gamble. But I never hesitated.

I agree, SpecialK. You are a very special brand of magic and your knowledge and compassion is a true beacon to us all.

For the last couple months I have had a huge whack of weird symptoms. 6 years ago I had similar symptoms and ended up seeing some autoimmune markers in my blood...these symptoms passed. I had bloodwork done again with no markers apparent for autoimmunity. I almost would have preferred these to arise again. I am seeing a Rheumatoid specialist in June. Crazy stuff that started with itching all over, then a headache for 3 weeks (had brain MRI - clear), dizziness, lots of nerve stuff (twitching, burning patches), blurry eyes. I had this first autoimmune bout at 43 years old and was diagnosed with BC at 47. I'm paranoid that there was a link between these two things even though there is no evidence to support such a claim. So of course I'm now thinking the same thing with this current round of weirdness...I get tired of the feeling that my equilibrium is off. Thanks for letting me vent!!

SpecialK

cowgirl - I sure hope she does well and gets another 25 years. Just in case, she could also get a second opinion from UC Davis or Stanford, both are NCI centers as well.

posey - thanks! Sorry about the autoimmune symptoms - diagnosing in that arena can be a sticky wicket. My mom had a degenerative neuromuscular disease that took forever to figure out - rheumatology has developed quite a bit since she first had onset back in 1979. Hoping you get good answers asap and that this is nothing more than a blip.

Mommato3

In regards to ooph/hyst: My MO didn't have a strong opinion either way but she definitely said there would never be a time that I could have estrogen circulating through my body. My gyn recommended having ovaries and uterus removed (I was diagnosed at 41). She didn't see any reason to keep the uterus and she wasn't concerned about heart or bone health in the future. I disagreed about the uterus. She finally agreed that I would be fine since I was a healthy weight and I wasn't planning on taking Tamoxifen after the surgery. Now if I could get back to that same weight...

FWIW: My mom had a complete hysterectomy and ooph when she was 24 due to complications after having her third child. She's now 65 and has never had any problems with her heart or bones.

SpecialK

hap - no the additional numbers are on top of those who had surgery and did nothing else, not that they got no benefit. You have to go back to the first line that says 91 out of 100 are alive if they just had surgery and did nothing else. It assumes that the 91 are not taking chemo, anti-hormonals or Herceptin.

SpecialK

hap - yes, if all they do is anti-hormonals. You are not going to be able to make the PREDICT 2.0 criteria fit you because you have done partial treatment in addition. I would think you would have some percentage of additional improvement because of that even if all you do is anti-hormonals from this point on.

SpecialK

hap - going off straight numbers, yes, you had good odds with surgery only. While the treatment may have caused other issues, or made you feel sick, it may also may have improved your chance for no recurrence. I don’t think anyone who undergoes breast cancer treatment doesn't feel sick at some point, it is to be expected. On the heart issue I can’t offer much perspective. I did have an asymptomatic drop in LVEF which reversed after my year of Herceptin was done. I never had to skip or postpone infusions because my drop fell within acceptable parameters. If you had underlying undiagnosed heart issues, or some kind of permanent damage, it is a different situation from a drop in LVEF that generally reverses fairly soon after Herceptin is finished or prematurely stopped. Maybe others who have had to stop early can advise - what do your doctors say

Cowgirl13

SpecialK, my friend's oncologist said that chemo would not be able to affect her tumor, which is estrogen positive. I don't understand this. They give chemo to triple negative--don't understand. Would like your take.

She will be getting on Arimidex.

Thanks!

Cowgirl13

SpecialK, I don't understand why my friend's oncologist would say that chemo would not work on her tumor. Her tumor is estrogen positive. She will be taking arimidex.

Trisha-Anne

Hi Cowgirl,

With my first bc, we had to wait until after surgery to see what the path report said about my receptors. We knew the tumour was ER and PR + and apparently if it had been HER2 - I wouldn't have had chemo. My case went before a tumour board to decide. A week later it came in as triple positive as well as a positive node, so a no brainer.

Triple negative the second time, five years later, and chemo a no brainer.

If your friend is only ER and PR positive with a relatively small then chemo isn't always "standard". Mind you - that's here in Australia - and we can be different to the USA. 

Trish

Cowgirl13

Trisha-Anne, thanks for your input. My friend had a tumor 2.5 cm taken out but they had to go in again to do an excision. Her tumor is estrogen positive. Do you know what would constitute small tumor? Thanks!

VVV

Cowgirl, it seems like endocrine therapy can be just as effective and sometimes more effective than chemotherapy for ER+ HER2-. There's factors that play into the choice and it's not appropriate for everyone, of course, but I wouldn't worry. This article is about it in the neoadjuvant setting that might put your mind at ease. http://www.breastcancer.org/research-news/neoadjuv...

SpecialK

cowgirl - I would ask for an OncotypeDx. Without genomic testing the doc is guessing, which to me is not good enough. When was the tumor removed? Testing can take a couple of weeks and chemo is optimal within 30 days of surgery. I would ask to expedite testing.

hap - here is some info re anti-hormonals that has study percentages that appear greater than what PREDICT is showing you.

https://www.texasoncology.com/types-of-cancer/breast-cancer/stage-i-breast-cancer

BJI

Well, today I ran the bell at the cancer center! All finished, been a long year, glad to see the end. April 2017 had lumpectomy, balloon catheter radiation, 12 weeks Taxol/Herceptin. End of August 2017, Herceptin only every 3 weeks, started arimidex mid September. It has been a roller coaster, really no major problems, surgery and radiation very easy, some bone and joint pain with the taxol. No complaints with herceptin, the arimidex started out good, gradual increase in joint/bone pain, stiffness. MO said we could switch to another AL, but I am going to try stay on til September and reevaluate. Multiple echo's show no heart issues, have osteopenia. Rechecks every 3 months with MO. Glad its all behind me. Oldest granddaughter graduating from high school this weekend, so busy week and weekend. Have new grandchild coming in July, so hope to get back some energy, enjoy this summer at the lake. Thanks for all the support from this group, all the information, especially Special K. Time to get on with my life!

Jjewel

HOORAY BJI! I love hearing good news. Get back to life and living. My oldest granddaughter graduates this year too! My husband is from MN sowe hope to get up there soon. Enjoy the lake, not going through treatments and getting some well deserved rest from all your persistence in getting through the last year. It's tough but you did it! Congratulations 👏💕🌷

SpecialK

hap - OncotypeDx is a genomic test that is only available to ER+, Her2- patients, that looks at 21 genes to determine whether chemo would offer benefit. The test gives a numerical range score that is low, intermediate or high. The test assumes use of anti-hormonal therapy when computing the score. The purpose is to determine whether chemo should be given in addition to anti-hormonals. Mammaprint is also a genomic test but looks at 70 genes, offers subtype information, and results in either a low or high score, and does not assume anti-hormonal use in the score. The test is not limited to ER+ or Her2- patients like OncotypeDx is.

BJI - yay for you! That's great

TTW

beyond pleased. BS called today with path report. Clean margins no lymph involved and only 3mm. Says rads for sure maybe Herceptin but no chemo. I will go for 2nd op at MD Anderson. THOUHTS?

SpecialK

ttw - I’m glad for your great path report, but have you spoken to an oncologist? I’m hoping that your surgeon is not be advising about systemic therapy, it is not their area of expertise. I would speak to an oncologist first, then get a second opinion from another oncologist if you feel the need.

Cowgirl13

Re oncotype, its only for ER+, Her2-. You can't PR positive?

Cowgirl13

TTW, awesome news!!!

SpecialK

cowgirl - you can be either PR+ or PR- for OncotypeDx, you just have to be ER+ and Her2-

Cowgirl13

Thank you, SpecialK!

Cowgirl13

Thank you, SpecialK!

TTW

the BS works in a team w MO and said his final decision but typicallyhe doesn’t rec chemo for under .5 sized tumor. Meeting both next week. Shouid I ask for mammoprint?

shelabela

Bji, yay that's awesome! I know what ya mean about a long year

Ttw, great news!

coachvicky

Awesome BJL!

Vicky

LaughingGull

Congrats BJL! Enjoy your summer at the lake. Looks like a fantastic summer to me.

Tresjoli2: the oncology gyn I talked to said the notion that women with ovaries lived longer is based on one big study in which there was no adequate control of all the variables going into women living longer therefore the evidence is "murky" about the benefits of keeping the ovaries.

Poseygirl, I totally agree with you on the frustration of not getting a clear recommendation and instead leaving it to you to make the decision. With you in the big gamble, sister. I will start radiation in a week, all over the place like you got.

Thanks MommaTo3. I also think about weight gain. Hate gaining weight!

And thanks SpecialK for your illuminating analysis

Happy Memorial Day Weekend everyone,

LaughingGull

Taco1946

Thanks Demi - actually I was 72 last week and have a year of AI's marked off the calendar.