Chemo/Herceptin Treatment Question

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PJAL
PJAL Member Posts: 68

Hello. My first post and I am hoping you can share some insight. I am being treated at Hopkins (I live very close to Baltimore) and met the oncologist yesterday for the first time through video. She recommended the following treatment for stage 1, no nodes involved. Multi-Focal, 3 tumors. Largest 1.5 cm Equivocal HER2 positive and negative according to FISH., smaller 1.0 which was equivocal at first, but is now considered HER2 positive (FISH) 3.5%. Ki67 15%, Tumor grade 2, 95% ER, 5%.

To try and drop recurrence rate, 12 weeks of Taxol with Herceptin. Herceptin continued for a year. Once the treatment is complete, some sort of hormone blocker in the form of a pill for 5 years. I have read that even in early stage HER2 positive, the recurrence rate can drop so I believe this is the standard of care.

I have a second opinion with another oncologist on the 18th, but I think treatment will begin before the 18th of May and she can't take see me earlier. I contacted Cancer Treatment Centers of America because I saw an add that they could give me a second opinion quick.

My questions. Given that the Ki67 is low and the FISH test is low, I have read that Herceptin may be resistant to individuals with low KI67 and low Her2 positive score. Is Chemo/Herceptin doing more harm than good? Has anyone had any experience with low scores, but were recommended similar treatment? Is the Cancer Treatment Centers of America the best place to go for a second opinion? They want me to come in and stay for 3 days. I tried to do an online with Dana Farber Cancer Center, but they want $2,000.00 up front and will not accept insurance. In the alternative, I can start the treatment and not finish if I hear something different and of interest for the second opinion on the 18th of May.

Any advice? Thank you for your help.

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  • PJAL
    PJAL Member Posts: 68
    edited April 2020

    I forgot to mention that the tumor had mucinous features, if that makes any difference.
    Thanks so much again.

  • JoniB
    JoniB Member Posts: 346
    edited April 2020

    Hi. Sorry you need to join this community but this is a great group with a lot of compassionate and knowledgeable people. The protocol you described sounds standard for Her2 positive stage 1 breast cancer although I can't speak of the low ki67 score. Cancer Centers of America is a for profit facility and I can't imagine why you need to be there for three days to get a second opinion other than to redo tests and charge more money (just my jaded view). Search for posts about them using the search function on this site. Perhaps get a second opinion at Georgetown or GWU?

  • PJAL
    PJAL Member Posts: 68
    edited April 2020

    Thank you for your response. I’m having a difficult time finding a person who will see me for a second opinion in my area quickly. CTCA the only people who could see me quickly. I feel I should get a second opinion for treatment according to some recent posts I’ve read.

  • BevJen
    BevJen Member Posts: 2,523
    edited April 2020

    Have you tried University of Maryland Medical Center? They are also NCI affiliated, and an excellent hospital, located in West Baltimore (about 10-15 minutes from Hopkins). I too am suspicious of CTCA, and of them telling you that you need to be there for 3 days -- where are you going to see them? Philly? If you're going to go to Philly, you could also check out U Penn Abramson Cancer Center or Fox Chase, both excellent facilities.

    Good luck.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2020

    PJAL - In many instances, the need for a second opinion is to either corroborate a treatment recommendation from a small or regional treatment facility by seeking an appointment at an NCI center, or if your diagnosis is complex and there is a need for consensus as to how to treat. Since you have already been seen at an NCI designated center with an excellent reputation, and you have a type of breast cancer with a straightforward treatment recommendation, if I were in your shoes I would not necessarily seek a second opinion. I had a larger tumor, nodal involvement, and surgical complications but because I was being treated by the former head of surgery at an NCI facility, and an oncologist who had also been there and was now at the largest independent oncology practice in the US, I did not feel I needed a second opinion. I realize that members here often say it is important to do so, but I think it is dependent on the circumstances of your individual situation, and it is not as universal a need as one might think. I too question why you would need to spend three days at a for-profit center, and have read and heard things about CTCA and their policies that make me uncomfortable. Can you possibly delay the start of treatment at Hopkins until after the 18th, so that you can hear the opinion of the other oncologist that you are already scheduled to see?

  • PJAL
    PJAL Member Posts: 68
    edited April 2020

    Thank you BevJen for your response. I do know where the UMMC is located and I considered them for treatment before I settled on JH.

    i have canceled all appointments from CTCA. I had a funny feeling about them hence my post.

    Thanks again.


  • PJAL
    PJAL Member Posts: 68
    edited April 2020

    SpecialK,

    Thank you for your insight. I am on the fence about delaying treatment just to get a second opinion. I think you may be right about not necessarily needing a second opinion in my case. It’s just that everything I’ve read up until your post said I should.

    I think the treatment is straight forward and I most likely will hear the same thing from any other reputable doctor. I was just hoping to hear that I needed less treatment based on my research on my low HER2 and KI67 scores. I’m still in a bit of denial. The oncologist says there are very small studies on this subject and it’s best to follow the standard of care.

    I’ve canceled all CTCA appointments. I felt strange after speaking to them so I decided to ask for help through this group.

    Thank you and all who responded!!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2020

    PJAL - If I am reading your original post correctly I am seeing your second mass, the one that is 1cm was equivocal on IHC testing, but positive on FISH testing, as the reason for the chemo/Herceptin decision, correct? While hormonal receptor testing done with IHC yields a percentage - such as your 95% ER+, FISH scoring is different because it is a different type of testing platform. A FISH result of 3.5 falls into the positive status as the range for positivity is any result greater than 2.2. I don't believe that would be considered a low result, but rather is solidly positive. Most tumors are initially tested by IHC for Her2 status because that test is markedly less expensive. An equivocal result is then reflex tested by FISH, or another different testing platform, to see if there is a more refined result. Standard of care for a 1cm Her2+ breast cancer would indeed be 12 weekly infusions of Taxol plus Herceptin, then continuation of Herceptin for the balance of the year, per ASCO treatment guidelines. Your anti-hormonal therapy directed at the ER+ aspect would commence at the conclusion of Taxol, but during the Herceptin only phase. Something else to consider is your low PR+ percentage, potentially signaling more aggression. This was the case for me as well. Ki67% is considered useful info by some oncologists, but it is a somewhat subjective measure and is not always regarded as accurate. Ki67 below 6% is considered low, 6-10% intermediate, above 10% is high, so you are on the lower end of high, but not in the low categor. I am linking an oft-cited study, and the 7 year follow-up, for patients with your diagnosis, and encourage you to come over to the Triple Positive thread, which I will also link - lots of people who post there have had this same chemo/Herceptin regimen and can offer encouragement and support, and will gladly answer any questions you may have regarding treatment. Wishing you the best as you move forward!

    https://www.nejm.org/doi/full/10.1056/NEJMoa1406281

    https://www.ncbi.nlm.nih.gov/pubmed/30939096

    https://community.breastcancer.org/forum/80/topics/764183?page=1289#idx_38649

  • PJAL
    PJAL Member Posts: 68
    edited April 2020

    SpecialK, thank you for your post. Your thorough explanation makes sense. I really appreciate the time you have taken to explain this in detail and to send the links. I forgot to mention that the tumors were mucinous differentiated. Although this is rare, everything I’ve researched on this type usually Doesn’t end up being her2 positive. Still in a bit of a shock and very anxious.

    I have seen the triple positive group and actually thought I was posting in this group.

    Thank you again for all of your help.

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