What Would You Do?

BermudaRainbow

Hello All and thank you for allowing me to join the club that no one ever wants to be a part of. 🙂 I had my first mammo this past July, at the age of 44, vegan for 8 years and physically fit, however for the past 5 years suffered from extreme stress and anxiety and was having serious hormonal fluctuations, needless to say, the mammo was clean but I told my husband I needed to change work and other stress inducing things in my life or it was eventually going to cause me illness etc and a few weeks later found a tiny bump while doing a routine self exam, that was very high up on my chest which was diagnosed originally after biopsy, as 1cm, Stage 0/1, Grade 3, IDC, ER+ PR+, (both 100%) and HER2-, KI-67 90%.

Scheduled for lumpectomy with radiation to follow and then tamoxifen for 10 years but on morning of surgery on 11/15, during my ultrasound to mark for surgery my dr told me my MRI revealed another suspicious area in the same breast. It could not be found during ultasound so surgery was postponed and another MRI with biopsy to the suspicious area was ordered. During ultasound I was told my breast were cystic and dense and I would likely be having more biopsies in the future but that it did not mean I would have additional tumors.

I learned that if I did have a recurrence I would be limited in the ability for reconstruction due to radiation and previous elective breast surgeries. I opted for a mastectomy on 12/1 to avoid rads and further biopsies down the line.

Surgery went well lymphnodes were negative and suspicious area was nothing and small tumor was removed with no further evidence of cancer. BS told me at followup I would need no further treatments except tamoxifen.

Went to med. oncology appt on 12/21 thinking I was only there to discuss tamoxifen but dr tells me there was an issue with my pathology. Ki-67 had gone from 90 to 30, and HER2 went from neg at biopsy to equivocal so they retested and got another equivocal result and retested a supposed different part of the tumor and got a weak positive so now I'm triple positive I she is recommending chemo once ever 3 weeks followed by herceptin over 6 months then tamoxifen. I was in complete shocked and have an appt for a 2nd opinion on 1/11 in NYC. I've been eliminating foods high in phytoestrogens and increasing foods that block it, I've also not gone back to work and I am feeling like a new person. Dr is refusing to give me a mammo print or oncotype, saying there is no benefit.Thoughts?

Meow13

I would second your getting a second opinion. I have heard that herceptin may be beneficial for borderline her2. I think red flags are raised here when they won't recommend further testing. I think oncodx is not valid for her2+ but there are other tests. Being so highly hormone positive I would lean toward hormone therapy. I am assuming the pathology results are the initial biopsy and the mx. I get concerned about treatment especially when they are unable to see if it is working. If you do chemo then most likely hormone therapy is delayed.

Moderators

Hi Bermuda-

It sounds like you've been on quite the roller coaster! We definitely think a second opinion is a good idea, hopefully you'll get some more definitive answers. We know chemo can seem scary when you'd been expecting to avoid it, but we recommend reading through our chemo forums for some insight, in case you end up down that road: https://community.breastcancer.org/forum/69. Also we have a forum for HER2+ members, where you might find some helpful info: https://community.breastcancer.org/forum/80.

We hope this helps! Please keep us posted on what you end up deciding!

The Mods

BermudaRainbow

Yes Meow13 the results are from biopsy and my. How could the KI-67 change? They actually never told me about any tests being available, I researched. This is a top 10 breast cancer center and I feel that I've learned more from my own research and had to slow them down so I could process the info. I'm praying the 2nd opinion feels better

BermudaRainbow

Thank you. I will. I have no problems doing chemo, even as a vegan. I'm not niave. I just want to know the benefit in my situation which they haven't been able to give me. I will keep you posted. Happy New Year!

ElaineTherese

Typically, the oncotype test is only given for the most common form of breast cancer, ER+, HER2-. I do know that some HER2+ patients have had mammaprint done (Special K?), but, in most cases, oncologists recommend chemo + Herceptin to HER2+ patients. The equivocal thing might be something to look into, but your cancer was Grade 3, which suggests that your cancer was dividing rapidly and was aggressive.

Is your oncologist recommending Taxol + Herceptin or something more aggressive (Taxotere + Carboplatin + Herceptin)? You might be able to get away with the former, which is (supposedly) gentler to your system. I'm glad to hear that you are seeking a second opinion, and hope that another oncologist can shed light on your situation. Keep us posted, and best wishes!

BermudaRainbow

she's recommending TCH every 3 weeks 4-6 cycles followed by Herceptin every 3 weeks for 11 doses. Then tamoxif

BermudaRainbow

I'm sorry I should mention that she also gave me a weekly option of taxol and herceptin for 12 doses followed by the hercepti

ElaineTherese

Well, plenty of women have made it through TCH. It's a common regimen, though it does produce gastrointestinal distress in some. (I had Taxotere's "gentler" cousin, Taxol, and ended up with mild diarrhea, which i controlled with Imodium.) I didn't really have any side-effects with Herceptin. Hope your second opinion is helpful!

Meow13

You probably are aware of the risk of permanent hair loss and that it appears to be elevated with taxotere. There are some bco members who can tell you about that, you could ask about taxol. I would also ask about hormone therapy and the delayed usage of it. I am guessing they feel the chemo regime with herceptin should keep recurrence at bay. Your tumor being 100% er and pr positive suggests more treatment options. I would guess it would be atleast a year before you would take tamoxifen.

Good luck to you, being triple positive might not be such a bad thing.

BermudaRainbow

ElaineThereseDo you think the weekly taxol with herceptin would be doable, or do you feel I would need more time in between to recoup? Is the hair loss still a side effect?

BermudaRainbow

Meow13 I was not aware of this, I haven't had the appt to discuss SEs as I wasn't in the frame of mind after the first appt. Yes they say triple positive is a positive thing. I'll just be glad for my S

Meow13

Bermuda, I thought I read on another thread that one woman did herceptin with hormone therapy no chemo. But I think the tumor was less than 0.6 cm. You could ask about it.

Also I had never heard of cold caps either for hair loss on chemo. Some hospitals are doing dignicaps where they are at a constant cold temperature different than penguin caps that require dry ice supply.

I know one person that said if she had to do taxotere she would do the caps do prevent loss and damage.

BermudaRainbow

yes I asked if I could have herceptin alone and was denied

Italychick

Bermuda, I was her2 equivocal and had to have three levels of testing to determine I was slightly her positive, I think 2.4 and the cutoff is 2.2, and that was determined after calculating some different ratios, like HER to CEPT or something like that. Oncologist left it up to me as to whether to do Herceptin or not but said if she had my choice to make that she would do Herceptin. Chemo was a given with negative ER and PR receptors. I did a lot of research and thinking, and did the TCH regimen after oncologist said we go for cure now. I made it through five rounds, six was cancelled due to neuropathy symptoms and gastrointestinal issues, but oncologist said I had plenty of chemo. I was also offered the taxol and Herceptin combo, but I chose the TCH regimen because I had the impression carboplatin can cross the blood brain barrier, and I read some stories of women who were fine from the neck down but had their cancer go to the brain. So maybe ask about carboplatin and if it does cross the brain blood barrier. Most chemo are too large of a molecule to get into the brain. After looking at a lot of information about Herceptin, I decided if there was any chance it would work for me, I was willing to take the chance since it is such a powerful treatment. Not to scare you, just sharing my reasoning.

Finished chemo May of 2015 and Herceptin February of 2016, and my hair is now at my neckline and to date have had no long term side effects, and all scans have come back clean so far. I was able to work and keep my grandchildren all throughout chemo although I did work from home two days a week since that is my normal work schedule. I rode my bike 3,000 miles even with doing chemo. No nausea to speak of, and I don't feel the treatment negatively impacted my life other than hair loss. It wasn't perfect, I got folliculitis on my scalp, my taste buds were crap, my butt bled a couple of times, and eyelashes and eyebrows partially fell out. The neuropathy symptoms I had were I became unable to tell hot from cold water temperature with my hands which alarmed my oncologist. But honestly if it wasn't for the gastrointestinal issues, which I feel were partly because I didn't protect my digestive tract sufficiently, I could have done all six rounds.

There is no easy choice. Get a second opinion and do what is right for you. My purpose in sharing my story is to let you know not all chemo stories are horror ones.

BermudaRainbow

Thank you so much ItalyChic

momand2kids

Bermuda

let me also add that chemo, while unpleasant, was not horrible. I have a slightly different dx, and was also surprised by chemo when we were able to have a lumpectomy with clear margins. everyone thought- ah, just radiation and hormonal therapy. Then my oncotype came back in the gray area-- so chemo it was- I had 4 rounds of A/C only--- nothing more-once every 2 weeks. I was able to work, but did work from home a few extra days- I got back to regular exercise during radiation (gave myself a vacation during chemo) and did ok-- was tired, but had young children and a fulltime job-so that was par for the course....

Not easy, but it can be done. I think a second opinion is a great idea- it was my second opinion that pushed me to pick chemo- and I have never really regretted it. Hair loss was the hardest thing for me-I had great hair- but guess what? It grew back and it is still great-- thick as ever... and when it grew back it initially grew back curly, which I loved (having had really straight hair all of my life)..... curls eventually straightened out but it was fun!

I am sorry you have to go through this-- one of my friends had herceptin- so it felt like she was in treatment for a long time, but she just organized her life and work around it and went about her business-and she is just fine now 5 years out..... about to go off tamoxifen. One step at a time.

Best of luck to you.

Meow13

Bermuda, keep in touch. Praying your treatment does the trick.

BermudaRainbow

momand2kids thank you for this! Can I ask what type of chemo?

BermudaRainbow

Meow13 thank you I will. I travel to NYC on the 11th

BermudaRainbow

what are your thoughts on options? TCH every 3 weeks or taxol and herceptin every week

SpecialK

Bermuda - if I had a 1cm mass and was weakly Her2+ I would elect the Taxol and Herceptin, weekly, for 12 weeks, then switch to higher dose Herceptin every 21 days at the conclusion of Taxol.

http://www.breastcancer.org/research-news/20140207-4

This is a thread devoted to weekly Taxol, if you look at the sig lines you will see that a number of these folks are Her2+:

https://community.breastcancer.org/forum/69/topics/788735?page=231#post_4876356

Meow13

I guess it is the her2+ and the grade 3 pushing the taxol but 100% er and pr postive I'd want to get the hormone therapy going ASAP. Also getting the herceptin makes sense.

It would really be helpful to know if the treatment would be effective before jumping on it.

BermudaRainbow

Thank you so much for this! So helpful!

BermudaRainbow

Thank you so much for this! It helps when trying to make my decision.It's crazy how I feel amazing and would have never known that I just had a mx. I want to be able to care for my 2 kids and not be "sickly" around them and least continue to be able to do do yoga. I want to get over this as quickly as possible and not suffer.

BermudaRainbow

Do you guys feel I am waiting too long? Standard of care from a pathology point of view shows 12 weeks after surgery, my oncologist is saying the same thing but the other hospital says they like to begin treatment 4-6 weeks after and some other sources online say 6-8. It's all so confusing. Also, do you think that the odds are low that the second opinion will say no strong chemo and just allow herceptin and hormone?

momand2kids

Bermuda

I had 4 rounds of A/C. My best friend who was triple positive had 6 rounds of AC and taxol- then a year of herceptin....

Meow13

Bermuda, I am bothered by the fact you are 100% er and pr positive just barely her2+ although grade 3. I would want a good explanation of why they wouldn't think herceptin and hormone is not a good option. You won't know if the chemo is working since there is no tumor mass gone after surgery. I know there is a standard treatment of care they should follow but what about personalize to your case. And why wouldn't they do some more testing from on outside source like the suite of symphony tests. I deleted my other comment because I don't want you to lose confidence in your choice of medical treatment. The second opinion next week should explain not just tell you what to do. As far as the timing of treatment I never received any explanation after I asked why my oncologist said if you don't start chemo in 2 weeks, this is after healing from mx, you will not be offered it again. I got that bad feeling like those pushy sales groups if you leave this offer is gone feel. I just said screw it, not worth it, not convinced even though oncodx said 34. I just knew I did the right thing for me. No one ever mentioned cold caps, or medications to reduce side effects, etc...

After years of searching I finally concluded that the extra percentage benefit they quoted me on the oncodx would not be comparable if I waited a couple months. Also my oncodx test quotes with tamoxifen and I didn't take tamoxifen I took anastrozole. I ran into a study that showed a significant benefit to anastrozole use for er+ pr- individuals. Well the bottom line is the benefit in chemo for me was an overstatement. I am glad I did not put that stuff in my body. I did AI drugs with the idea there would not be permanent side effects that wasn't true. I am ok now, but not the same health as I once enjoyed.

BermudaRainbow

meow13 I am bothered by much info that has not been given. I feel that because they do this all the time and are such a huge specialty that I should just trust what they say with no explanation. For instance, when I ask are there other tests, they say no, instead of there are but these are the reasons why we feel they wouldn't benefit you etc... it just leaves I funny feeling with me. I'm worried that next week, if I'm happy with their recommendations I will be forced to travel 4 hrs because my local dr won't agree. I will do what is best but I want reasoning that makes sense with some data, which my dr is saying there isn't any in my situation

Lisey

The Blueprint test will give you a definitive on whether you are HER2 or not. The blueprint is a part of Mammaprint testing suite. I would highly suggest you get that test.

KBeee

To the best of my knowledge, in early stages, Herceptin is only approved to be given with chemo. You'd have to clarify that with your MO though.