Young, Stage 1A, Grade 1- chemo?

Englishmummy · August 2015

Hip - Me too, me too.... that's what I am looking for too, 100% cure rate or at least a darn test to tell which side of the line you fall (will recur, won't) .... yep, the 'nth of 1' Good Luck with your MX, Anschutz are brilliant so I have heard.

Apologies Tiffany, but it is incredible to read to others point of view....

tshire · August 2015

Annie, unfortunately no, my insurance does not cover fertility preservation. I am currently applying with LiveStrong and another local program for help with the costs. The "nice" thing about Triple Neg BC is that it is not affected by hormones, so unless chemo destroyed her ovaries she would not need to worry about embryo preservation. I am VERY hormone sensitive so I'm going to have to wait at least until I am at least 37 (5 years of hormonal treatments) before I can even think about becoming pregnant. And my preservation treatment is slightly risky, since I will be receiving fertility drugs- the doctor has to be very careful in dosage and will need to monitor my estrogen levels closely and quickly bring them down with Femara after harvesting (aka yet another surgery). My poor arm is already all bruised up from all the needle sticks since they can't use the other due to risk of LE. All this in the next few weeks!! I am so scared. I thought the fear would get better but it's just a different kind now.

Englishmummy... re: Mammaprint-oh God I have no idea. I am really hoping MD Anderson can help me make a good decision if that happens. That would just be the crap icing on the shit cake, pardon my language. I'm meeting with another MO next week who is affiliated with a different treatment center "chain" to get her opinion as well. I want to get at least 3 opinions, plus the tumor board input.

39, can you send me the studies you've found with age as an independent prognostic factor? I'd really appreciate seeing them. I'd like to show them to my family. They are against me doing chemo. I sent my mom the SOFT trial publication and she immediately quoted from the study "Most recurrences occurred in patients who had received prior chemotherapy" which implies that she thinks chemo might CAUSE recurrence. She really doesn't think chemo affects grade 1 cancers, and would be more toxic than beneficial to me. (She is a very smart OR nurse with extensive medical knowledge, so I value her opinion, but she's not an oncologist). My dad is vehemently against me getting any treatments at all beyond surgery, and thinks a macrobiotic diet will cure me (no). I know both will support my choice if it is chemo eventually because they love me. It just makes this decision harder because I feel like I'd be scaring/disappointing them.

If I was Oncotype under 15, with a much lower Ki67 score, I'd definitely be in the no chemo camp. But the high Ki67 is the most disturbing part to me. MO #1 said 90% of women have a Ki67 under 10% (seems like a strange claim, maybe she meant 90% of ER+? or grade 1?) She also said most women with a mitotic index of 1 have no mitotic features seen, I had <5 seen on biopsy and <1 seen on surgical specimen. Still considered grade 1 both times. But she said that's a sign of proliferation.

Of course, now I have had some lower back pain on my right side for the past 3 days or so and I am freaking out about mets. I guess if it's still there at my next MO #2 appointment next week I will ask about it. I was never offered any body or bone scans. It's definitely a new thing, I've never really experienced back pain before. My legs and gluts are also sore though, so that makes me feel better. I've been working out like a fiend trying to punch this monster in the face.

39andhip · August 2015

I was going to send you a private message, but apparently I cannot attach articles through this site. I can e-mail some articles to you if you want to give me an e-mail address - otherwise I can just send you the article information and you can look them up if you have access to a database (e.g., PubMed, ScienceDirect, etc.). But the good news is that I did some more in-depth reading and age as a prognostic factor alone is apparently controversial.

I totally hear you on the challenges with parents... My parents are very anti-medicine and my mom was completely against radiation. It definitely makes choosing a treatment path with a clear mind more difficult.

614 · August 2015

Dear Tiffany:

M.D. Anderson Cancer Center is terrific. The doctors all work as a team and the treatment is facilitated quickly and easily. They are FANTASTIC! You will love it there. The doctors are caring, competent, well informed, intelligent, experienced, and top notch. I live in Florida but as you can already tell, I was treated at M.D. Anderson Cancer Center. They are the "flagship" center and they use the latest technology and research to guide their treatment protocol. It is great that you are able to go there for a second opinion. That being said, be prepared for second opinions to possibly be different from first opinions.

I love my MO in Florida and I am so lucky that she is my doctor. That being said, I am fortunate that I was able to be treated at M.D. Anderson Cancer Center and I would recommend M.D. Anderson Cancer Center to everyone.

Just so you know, there is a salon in one of the buildings. The salon will give you a wig for free if you want one. The hospital will give you hand made hats. There is also a hospitality center which is wonderful. You live in Austin, not Houston, so the hospital can give you information regarding where to stay, if you do not have family/friends in the area. The hospital/doctors are great about scheduling so that out of towners can be seen in the shortest span of time possible. (i.e. - I will be having my next Mammogram, Sonogram, and MRI all in one day in November 2015 at M.D. Anderson Cancer Center and I will find out the results the next day at my appointment with my radiologist. I am currently on a 6 month wait and watch plan for a 1.5cm linear non-mass enhancement with rapid washin washout kinetics - Bi-Rads 4b.)

I am glad that you are getting married in March. That should give you something positive and wonderful to take your mind off of breast cancer. Congratulations on your engagement and upcoming marriage. I think that your decision to start the process for embryo preservation is a good one so that you will not have to worry about that issue in the future. You are not being vain. You WILL be beautiful at your wedding.

GOOD LUCK and sorry that you find yourself here. However, you will find a lot of support on this website. I wish you the best.

tshire · August 2015

My ongoing cancer drama continues:

I went to see MO #2 yesterday who could not explain the discrepancy between my high Ki67 and low mitosis rate at all. She said she'd never seen a high Ki67 with a mitotic index 1, grade 1 tumor before. She said she had no idea why this was happening, except that she was glad that MD Anderson is re-doing my pathology. She did say that theoretically/ideally the Oncotype would also be taking any tumor-suppressing genes into account when coming up with the score.

One interesting thing to come out of yesterday's meeting with her is that she does not agree with MO #1 about doubling my risk based on age. She said that is an "old" way of thinking not based on data, and that she knows MO #1, that they trained together at MD Anderson, and knows she likes to treat very aggressively.

She actually called the pathologist from Oncotype/Genomic Health and discussed that with him in front of me, and he agreed that doubling the risk is unnecessary, and not based on any data he is aware of. He did point out that 70% of the women in the Oncotype studies were postmenopausal, and the 30% premenopausal tended to skew towards higher Oncotypes, but it wasn't statistically significant. She said she believes my absolute benefit is about 3% from chemotherapy, but that it is not statistically significant enough to offer any definite recommendations. She said any statistics we could look at would be colored by the fact that my particular case is unlike 99% of the women studied.

I asked her on a scale of 1-10 (10 being DEF CHEMO) what I would be, and she said a 6. She said this particular course of chemo would have no long term side effects and relatively tolerable short term side effects. So technically the small benefit of chemo might outweigh the even smaller risk of chemo. She said it's a personal decision for me to make. I'm just like, what the hell? You're the doctor! I didn't go to medical school and I'm the one to have to make decisions about whether to put poison in my body or not?!

All of these statistics are hard for me to swallow considering according to the Gail Model I had a .28% risk of getting BC between the ages of 35-40.

Finally she said I should wait for Mammaprint and the pathology re-do and come talk to her again before we make any decisions. And then she said if I'm going to do chemo I need to start by the first or second week of September.

She also suggested that MD Anderson might want to "study" me. That sounds like something I'd rather not do.

123JustMe · August 2015

tshire! you really have been on quite the roller coaster. hopefully when md anderson reviews your slides they can shed some light on a treatment plan.

windingshores · August 2015

I also had mismatches in my results that confounded MD's. It is hard when you don't fit the picture that is expected.

I noticed the grade 1, mitosis 1 that conflicts with the high ki67 and even the Oncotype. With such high ER responsiveness, one would expect a lower Oncotype so perhaps the ki67 really is high, but that doesn't make sense does it?

My MD's all told me that ki67 is unreliable, but the Oncotype includes it (and other proliferation signs) so that conflicts with their trust in Oncotype. Still, perhaps it could be redone-?

Grade 1, mitosis 1 would not suggest chemo of course: some women with these numbers don''t even take hormonal treatments.

I hope you can resolve questions about the ki67.

The TailorX trial should have results this year about intermediate Oncotype scoresm, which are so problematic for decision-making. I felt that 18 or under I would not do chemo, 23 or over I would for sure, and in between I would just go crazy deciding That is where you are!

Are you on any anti-hormonal (Tamoxifen) while you wait?

tshire · August 2015

Well, surgeon just called- Mammaprint came back high risk. 22% of distant recurrence with no therapy. Luminal B. I guess that clinches it.

Damn.

I'm having a hard time right now.

Englishmummy · August 2015

aahhh, Tiffany. That sucks. I was holding out for better news BUT at least it colours the gray area and tells you which way to go. The second MO sounds more progressive to me (that would be a good thing in my mind). Thinking of you.

Sloan15 · August 2015

@tshire, I'm stage 1, grade 1 but a high ki67, too (30% revised to 27%), and similar ER/PR/+ numbers. The reason they call mine luminal B is because of the high proliferation rate. My oncoscore score was estimated at 18-20. I was given the 4% bump number, too. One oncologist said no chemo, the other said chemo (...and the TailoRx preliminary results are not out yet). The third was going to do the oncotest and said "You are in the intermediate group. Regardless of the oncotest results, If you choose not to do chemo and the cancer came back, would you have deep regrets?" I'm older than you at 50, but I want to see my kids graduate from college and live their lives. I would have regretted not doing everything I could to fight the cancer. So for me, I choose to do the 4 sessions of TC, then radiation, then tamoxifen. I think you just joined our August chemo group and this post might be late, but since we always second guess ourselves, I wanted to throw my two cents in.

614 · August 2015

Dear TShire:

MD Anderson Cancer Center studying you is no big deal. They asked me if I would agree to be part of a study. All I had to do was sign consents. Nothing else. They were going to do a "blind" study using some of my tissue.

In addition, I had breast tissue that wrapped all the way around which is highly unusual. My cancer was on the left side so radiation is a concern because the radiologic oncologist must get all of the tissue with the radiation but s/he must miss the heart and lungs. My RO did a lecture on me to teach other doctors what to do in such a situation. It was anonymous so none of my identifying information was used.

I am sorry for your results. At least you have a clear treatment plan now. It sounds like you will be finished before your wedding. That is good news. You can get married and hopefully, all of this will be behind you.

I am wishing you the best with your treatment and in your future.

Congratulations on your upcoming marriage.

Cmo65 · August 2015

I had oncotype of 18 and oncologist said no to chemo. It only provided 1% benefit

bluepearl · September 2015

Chemo yes. Your age alone would probably require this and the Ki67 is too high to ignore even though mitosis score is 1. Worth doing all you can while you can. I wish I had had oncotypeDX for mine.

Mom2ABoy · October 2015

Chemotherapy doesn't have to be so difficult. Ask your MO whether you could do more frequent, low-dose chemo instead of three or four dose-dense infusions. I'm 3/4 of the way through a 12-week regimen of taxol, carboplatin and herceptin and have had hair loss, but no effects on my fingernails and very little neuropathy. (And honestly I think a good part of my hair loss is because of an injected medicine to keep my white blood cell counts up - my hair loss didn't start in earnest until I started this medicine.)

Everyone is different of course, but this is an option that I don't think enough MO's mention to patients. Frankly I think it's because it's easier to schedule people for appointments every three weeks than every week. It's for the convenience of both the patient and the clinic,but seriously, what is convenience in the face of dose-dense side effects that can be so debilitating!

Ygammyyet · November 2015

go to the best place, MD ANDERSON!! I'm sure they can help you even with a decision

Young, Stage 1A, Grade 1- chemo?

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