Rank My BC Stats, Which Is Worse and Where Should I Start?

CC_Caboose

I have really tried to educate myself about all that is my breast cancer and while I believe I have learned a LOT, I have never come across information that discusses which aspect "trumps" the others and would require me to get surgery sooner. Maybe it doesn't even matter, but I am hoping someone can help.

So here are my stats:

1. DX with Mucinous Carcinoma/IDC with Mucinous Features 80% mucinous. I've read that Mucinous Carcinoma is slow growing and I am of the "mixed" variety.

2. I am HER2 positive, barely, on FISH. IHC was borderline. I've been told this is a major player in my cancer and will have to take Herceptin and possibly chemo.

3 ER+ 98%. I understand I will take Tamoxifen for this. PR was 2%, I don't think the PR really matters?

4. I'm 38. I understand that my age is possibly a negative and BC tends to be more agressive for my age.

5. Not sure if it matters, but I am BRCA Negative. I even footed thousands if dollars for a full Hereditary cancer gene test called MyRisk and was Negative for any gene mutation.

Out of all of these, which should I be more concerned with? I ask because I was diagnosed almost 2 months ago and have surgery scheduled the end of March. That's almost 4 months and everyone is freaking out about it except for me. If my HER2 is a big deal then should I be put on Herceptin until surgery? If my ER+ is a big deal then should I be put on Tamoxifen until surgery? I had a scare a few weeks ago that required an MRI guided biopsy on a potential second tumor, but it turned out to be benign. My primary cancerous tumor had not grown in 6 weeks when this second MRI was done. If being HER2 is so important then why hasn't the tumor gotten larger in this time?

Will one of these factors drive my treatment over another after surgery?

Thanks in advance,

CC

Meow13

well it sounds like you will have herceptin and tamoxifen to kill the cancer. Did you get a Nottingham score which determines the grade 2. You may want to get oncodx test that will give you a little more info on reoccurrence and whether chemo is recommended. What was your node status?

38 is young but being her2+ might actually be good now a days more weapons to fight with. Good luck to you.

CC_Caboose

Hi Meow13, Thanks for your reply. I have been told my nodes look negative for now (can only go by the 2 MRIs and an ultrasound). My doc will remove sentinel nodes during surgery. She thinks they will be clear since Mucinous Carcinoma doesn't usually invade lymph nodes. Crossing fingers anyway.

I see nothing on my pathology reports which says Nottingham score, but my tumor size is a grade 2, Intermediate. Could this be the same thing?

My doc did recommend I get an Oncotype DX test, but I was told I can only have this test done after the lumpectomy is performed and the tumor has been removed. The type of surgery I am getting includes a breast reduction to allow for wider margins, which sounded logical to me.

Meow13

you will feel so much better once you get the tumor out. It took me almost 1 month to get the oncodx results back after they sent my tumor in.

Anonymous

I also had a 2% PR, and they FISH test they ran came back non-amplified (negative). Btw the nottingham score is the "grade" but it doesn't have to do with size. A small tumor can be high grade and a large tumor can be low grade (like mine).

There is a clinical trial that is using Herceptin and a vaccine for IHC 2+ (borderline) tumors. I would not have been eligible since I went against "standard" treatment of chemo. My oncotype was 15, so I went by the recommendation of an oncologist at a research hospital with a specialized breast center. He said it would be reasonable for me to skip chemo, since the RxPonder trial is doing just that for 50% of patients. I missed the enrollment period by like a month, oh well.

Like Meow said, you're going to feel much better mentally after surgery where everything is more clear and the pathology is more exact. Keep us posted on how everything goes and wishing you the best going forward.

LM070917

The SOFT clinical trial released results in 2014 which looked at the effectiveness of tamoxifen and AL- aromasin with ovarian suppressor (eg zoladex) in young women (under 40). They found that aromasin and OS was more superior and effective at blocking estrogen and reducing reoccurrence than tamoxifen. They found ladies on tamoxifen get a 1 in 3 chance of it coming back and 2 in 6 with Al and OS. The latter is good news for us, as BC tends to be more aggressive in younger ladies. I would discuss this with your MO, if he/she hasn't already.

TexJerseyGirl

CC Caboose...some things to consider...

Breast cancer is comprised of 4 different molecular subtypes, two of which are Luminal A and Luminal B.

Luminal A is the most common type comprising ~ 80% of all breast cancers. These are ER+, PR+ and HER2- and low Ki-67 scores (cell proliferation rate). They tend to be less aggressive, less likely to invade lymph nodes, and have the best prognosis of all the subtypes. Research shows and has been validated by Oncotype data that this subtype does not benefit from chemo.

Luminal B, < 20% of all breast cancers, is characterized by ER+, PR +/-, HER2 +/-, and high Ki-67 (>14%). This subtype has the worst prognosis of all subtypes. It has a very high lymph node involvement, larger tumors of poorer grade, generally diagnosed in younger women and one research study I read showed recurrence free at 10 years to be 64% regardless of adjuvant therapies.

This information will be on your path reports.

I was told after mammo and ultrasound that I did not have node involvement and would likely not require chemo. Biopsy path report showed Luminal B subtype. Had sentinel node dissection during mastectomy and path report said "sentinel node completely replaced by tumor." This finding completely aligned with Luminal B type determination from biopsy path report.

In summary, if you are ER+, knowing your subtype will help you better understand your cancer and make sure you ask your MO many questions about the differences and how it will affect your treatment plan.

Best of luck to you.

Hopeful82014

TexJerseyGirl - Do you happen to have a link to the study you've mentioned in regard to Luminal B recurrence? If so, thanks so much for sharing it.

Good luck to you.

TexJerseyGirl

Hopeful, do not have the link but can tell you how/why I found it and maybe you or someone else can find and post it.

I was struggling with AI side effects and started Googling "Luminal B recurrence" to help me decide if it was worth it to continue. I read probably 30-40 articles over several nights of extreme insomnia (one of the horrible SEs). Don't really have the time to go back and read through the articles to find it now, but I can tell you that it comes up fairly prominently in the Google search, I remember that particular article and statistic because it was one of the ones that helped me decide not to continue with hormone therapy. It would be a good article to share if someone wants to look for it.

Hopeful82014

Thanks, TJG - with that info I should be able to track it down.

I'm sorry you have had such a struggle with Femara. Have you discussed trying a different A/I ?

TexJerseyGirl

Hopeful - Have not considered taking other AIs as the side effects that are so debilitating for me are caused by low levels of circulating estrogen and not the variances in inactive ingredients used by different manufacturers as so often reported by many members on this site. Since all AIs work the same, I just don't believe that switching one for another will make a difference. My MO didn't even offer that as an option.

kayb - I recognize the article you posted. Read that one, too. However, the one I referenced mentioned recurrence rates whereas the one you referenced mentions survival. I specifically remember the one I referenced said that although Luminal B had a higher rate of recurrence, there was no statistically significant decrease in survival than with that of Luninal A types. I will look for it.

CC_Caboose

Thanks for the Info TexJerseyGirl. I will start looking into you articles. I know my proliferation rate is 40%. Not to be a downer, but I feel like I've been handed a death sentence. I don't know if I will feel better after surgery and I'm not looking forward to it. I feel like the cancer is there fir a reason and am afrajd if I start messing ariund with it, its just going to piss it off.Honestly since I cannot feel the tumor and its not bothering me I want to prolong surgery as long as possible. Stupid and illogical I know. I am strongly against chemo and hormone therapy. I think the aftermath of treatmemt, especially the depression, will kill be before the cancer will. I'm currently in therapy addressing these issues. I'm blabbing about nothing. Again, thank you for the info I will look into it.

obsolete

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CC, im sorry that you joined us. I am also MMBC (mixed muconous), Supposedly 80% mucin & 20% IDC (nst). ER 100%. Luminal A. Multi-focal grade 2, but high mitosis. MMBC can be fast growing, even luminal A, according to one breast pathologist.. Pathologist claimed i had MBC less than one yeat. Please always obtain 2nd opinions on MMBC. 3 pathogists disagreed on my invasive component. Its not a death sentence, sister. Be kind to yourself and breathe slowly. We care.

Stephmoen

I think that you all shouldn't be getting caught up in the statistics for luminal b being so low those are older studies of women who didn't have perjeta and herceptin those changed statistics a lot and in 10 years survival rates will be much higher I did opt for oopherectomy due to the soft trials I will do whatever it takes im 30 with 2 young kid

mammalou

can someone tell me how they determine luminal a vs b? When I was diagnosed, that was not something put on a path report. I have read that a lot of the ER+ PR - tumors tend to be Liminal B.

voraciousreader

cc...I think the surgical pathology specimens should be examined by more than one lab so that your team can get a handle on exactly what you are dealing with. Also, your case should be presented before a tumor board. Based on your pathology of a rare type of breast cancer and your young age, you have lots of decisions to make. Keeping in mind that you are early in the decision making process, you should familiarize yourself with the NCCN breast cancer treatment guidelines. Specifically, look for the flowchart referring to tubular and mucinous breast cancer treatment. Also, read up on the SOFT and TEXT trials and read up on Perjerta and Herception if it is determined that you are HER 2 POSITIVE.

Finally, try to keep from making any emotional decisions. Knowledge is power. Make informed decisions based on the best possible information. And my best advice to you is that for most of us, breast cancer is a very treatable disease. Are there side effects to treatment? Yes! But if you communicate your issues with your team, and you trust your team, then you should do well. I realize there are inherent risks with all types of treatments, but there are inherent risks that follow waking up in the morning. Hang in there and let each day unfold as peacefully as possible. Once you have a treatment plan in place, you should be feeling better about your future.

Holeinone

CC, sorry you have to deal with this at your age. Never seems fair, I am thankful I was 58 when dx.

It all stinks, no doubt about that! My prognosis is scary, but living well presently.

I think you will be surprised how much better you feel once surgery is over & you have your pathology report in your hand. It's a big step closer to the goal, dealing with this, and moving on with life. My lumpectomy was easy. The drain was annoying, but that was because of all the lymph node involvement. I read that a low PR factor was bad. ( mine 4% ). It's all confusing. Knowledge is power, so true, but I am not a scientist.

Now I am babbling. Lol. Bottom line, it sucks ! one day at a time, be kind to yourself. We all find it comforting to be able to come to BCO, rant, whine & be honest. Hard to do with family & friends who cannot possibly understand.