Slamon second opinion

jellybean · 06-11-2010, 11:27 AM

Hi All,

I have inflammatory breast cancer that is Her2 positive. I was Stage IV from the outset, with widespread metastatic disease. After three cycles of TCH I was NED, and I continued with TCH for a total of 6 cycles, and then had a mastectomy and radiation. I have been NED for three years. In August it will be three years on Herceptin and hormonal treatment alone. I was recently diagnosed with what probably is a very small new primary in my "good" breast, although it is conceivable it is a metastasis. It has the identical pathology to the original tumor in my other breast (Her2 positive, ER positive, PR negative). I will be having a mastectomy at the end of June. I am thinking of having a second opinion on the appropriate change (if any) in systemic treatment after I get my pathology back from the surgery. I live in San Francisco, and I am treated by a top onc at UCSF. I am sure whatever advice she gives me will be excellent. I just would feel more comfortable if I had a second opinion.

Would Dr. Slamon be a good choice for a second opinion? I have a lot of questions, and I am looking for someone that will take the time to respond to them. Of course, I know he has a lot of insight into Her2 positive disease since he was behind the development of Herceptin. I also suspect that as a researcher he would be curious about whether the tumor is a new primary or a metastasis and whether it matters in terms of deciding on the therapy.

If you feel more comfortable pming me, that's fine too. If you have other ideas on a second opinion doctor, that would be helpful too.

Thanks much,

JB

Becky · 06-11-2010, 12:33 PM

Dr. Slamon would be a wonderful choice but I am wondering if it is determined that it is the same cancer as the first one if an onc who is a specialist with inflammatory bc might be a better choice. I will look on this board as there is "the best" IBC guy in Houston at MD Anderson (just a thought).

CourtneyL · 06-11-2010, 12:35 PM

Hi JB - Good to see you post on this site! The ladies and gentleman here are among the most informed anywhere. I'm sure they'll be along soon to offer you some sound advice.

As you know, I went to MD Anderson for a second opinion last October. They have an IBC clinic - you may want to consider heading there for a second opinion with someone who specializes in IBC. The secret to getting in there is to tell them that you are interested in joining one of their clinical trials. An appointment will magically open up.

Thinking of you and hoping the surgery goes well. Let me know if there is anything I can do. I'm just around the corner.

With love,
Courtney

Becky · 06-11-2010, 12:41 PM

I could not find the doctor but Midwest Alice goes to the IBC clinic at MD Anderson but gets her treatment by her local onc. PM her and she will give you the phone number and contacts there.

jellybean · 06-11-2010, 12:43 PM

Thanks very much for your responses. The second cancer is not currently IBC. Dr. Cristofanelli is the IBC guru, and he currently is at Fox Chase in PA (recently transferred from MD Anderson). I have heard great things about him. My hunch is that since I am metastatic already, and have been extremely stable on Herceptin (knock wood), what I need is someone knowledgeable about Her2 positive metastatic breast cancer. I don't think that once it has spread it matters that much that it is IBC, although I could be wrong on this.

Courtney, I might call you soon to discuss this.

CourtneyL · 06-11-2010, 03:03 PM

JB - You might also want to email Melissa from our MINTC support group. She is seeing Dr. Cristofanelli.

Nancy L · 06-11-2010, 03:33 PM

If your second tumor is her2 positive and you are currently receiving Herceptin, then I suspect you have become resistent to Herceptin. That is what happened to me. Dr. Slamon now has me on both Herceptin and Tykerb. They have found that even though Herceptin alone wasn't protecting me anymore, there is synergy giving Herceptin with Tykerb.

Dr. Slamon is a wonderful man and does take as much time as you need to get your questions answered. The only issue is that he only does clinic one or two times a month. You may want to call and make an appointment just in case you decide to have a second opinion after your surgery. The number is 1-310-829-5471. His PA's name is Kimberly.

I also received care at UCSF under Dr. Rugo. I think you are in good hands but it never hurts to get a second opinion.

Best of luck.

jellybean · 06-11-2010, 05:10 PM

Hi Nancy,

I am working on getting in to see Dr. Slamon. Did Dr. Rugo seem irritated with you got a second opinion with Dr. Slamon? Or did you move to LA or transfer your care to LA so this wasn't an issue?

Best,

JB

Nancy L · 06-11-2010, 06:32 PM

JB,

There was a long time between my treatment guidance with Dr. Rugo when I was first diagnosed at Stanford in 2004 and when I had a recurrence in 2009. She was amazing back in 2004. The clinical trials were not completed but she said based on the amount of disease I had (i.e., Stage 3C), I needed to be on Herceptin immediately. My oncologist in Reno just followed her orders, no questions asked. She was amazing---I wouldn't be alive today if she didn't order Herceptin. You do know that her mother died of breast cancer which is why she does what she does. I will always be grateful. She is a BC oncologist warrior.

I do live in La Quinta and Dr. Slamon is a good fit for me now that I am metastatic. I kind of knew this was going to happen---just a matter of when not if. So I made an appointment even before I was diagnosed. He is also truly amazing. I think if you can get an appointment, you should do it. I have never felt more hope than when I left his office. He is an unbelieveable oncologist.

Call me if I can help. My number is 530-412-2495.

Hugs, Nancy

Debbie L. · 06-11-2010, 06:57 PM

For anyone with IBC questions, and/or wanting referral suggestions, I highly recommend contacting the folks at IBC Research:

http://www.ibcresearch.org/

If you write to them, a volunteer will contact you personally. They can recommend expert second opinion resources throughout the country, they have a wealth of information on their website, they stay current with the latest progress in IBC, and they participate in the research.

Debbie Laxague