USA ladies-Where would you go/do you go??

[Aimee95]

After 18 months, my MBC is currently stable on Ibrance/Letrozole and complimenting w/COC protocol. My oncologist still has no idea I am on the COC protoco. Lately wondering what I'll do when it is no longer stable. My current oncologist is a general oncologist like most; he doesn't specialize specifically in breast cancer. I love him but he's a fan of Western medicine only. I've decided I want to seek out another opinion from a more specialized treatment facility / oncologist. Where have you ladies gone or where would you like to go? I reached out to Dana-Farber but then I was just looking at the reviews and they are terrible. I am open to travel anywhere in the US for a second opinion. I have so many questions and I'm just not sure my oncologist is up to date with all the latest studies and trials. Whenever I bring something up or ask about a study he immediately shuts me down. Any suggestions and experiencing would be helpful. Aimee

[Pbsoup]

I see Donald Abrams, at UCSF along with my breast specialist there. Not sure he’s taking new patients though. He wrote the textbook in integrated oncology.

I am also going for a second opinion from Garret Smith. He was recommended by my OBGYN and is also in San Francisco. But if you’re on the east coast it’s a long way to travel.

[Gwennie123 in reply to Pbsoup]

Garret Smith is my oncologist. He’s wonderful. Heavy science background.

I totally trust him.

[Pbsoup in reply to Gwennie123]

Thanks! That is reassuring. I am of two minds about leaving the mother ship of UCSF.

My concern is access to research and trials—not that I am in any yet. My current doc is a leading researcher. Do you feel he is 100 percent up to speed on new developments?

Do you feel listened to? Can you ask questions? Do you feel like he treats you as an individual?

Sorry to hijack this thread. Not sure how to PM.

[Klamato]

I had my second opinion at Dana Faber and found them to be on top of their game! I have the GREATEST team of oncologists at Upstate Cancer Center in Syracuse, New York and recently my oncologist has conferred with Dana Faber because she feels after my PET scan this month that my treatment needs to change due to tumor activity. I’ve been on Ibrance for almost 2 years along with Xgeva and Fluextra injection ( mispelled) . I’ve been stable up until now. I have Mets in bone, spine, pelvis, lung, and liver! 2 oncologist from Dana and Upstate have agreed that I should go on Verzenio and Tamoxafin , but we can’t seem to get it approved by the insurance, which is another problem. I’m trying to stay away from standard chemo, if possible, but am in limbo while my oncologist jumps through the hoops to appeal this. It’s a challenge to say the least and very disturbing. I feel fine other than needing a nap everyday, so I wish I could just continue to live my life the way I want to. We are suppose to leave for Florida for a couple of months but without knowing how I will react to the new treatment, it’s on hold! I’m trying to keep the faith but am running low right now! Anyone who has been through these obstacles , please reply. God help us all! Kathy

[Lordmandy in reply to Klamato]

Fighting insurance for stereotactic radiation now. 😡

[Bubbles001]

I see Dr Hung T Kong at Moffitt Cancer Center in Tampa, Florida. He specializes in breast cancer and is an immunotherapy expert. I’ve already completed one clinical trial there and he is helping me get access to Keytruda for free, which is not currently approved for breast cancer. He is definitely up to date on the latest treatments and research. Moffitt has a great reputation and they are happy to see you for second opinions. I also like that the breast cancer center is in its own new building away from the campus, so it’s easy to get to.

[hopenowandtomorrow in reply to Bubbles001]

I go to another cancer facility in Tampa Florida but I went to Dr. Hung Kong for a 2nd opinion and he was great! I second Bubbles001 opinion! ❤️🙏❤️

[Lordmandy in reply to Bubbles001]

Anxious to hear good news about keytruda.

[Iwasborntodothis]

I LOVE Dr. Wendt at the University of Arizona Dignity Health Center in Phoenix. He also treated my sister. He is a data nerd and I love it. His staff is also amazing. He has added a NP to help him see more patients. Its a beautiful practically brand new facility with valet and a Starbucks inside. All scans, pharmacy, and blood work done at the same place.

[Drsalome]

Good morning Would you please be so kind to tell or explain what is OCO? Thank you

[hurricaneheather]

i see Dr. Daniel Leiber at The Angles Clinic and Research Institute in Santa Monica, CA. he is the onc i went to with the initial diagnosis. additionally, he discovered the mets and started the treatment protocol. i now spend the majority of time in FL. i see Dr. Han at Moffitt Cancer Center in Tampa, FL; Dr. Leiber 'selected' her, for me. i still consider Dr. Leiber the primary onc and see him yearly, in addition to appointments w/Dr. Han.

[Hidden]

Hi Aimee95...

Great question. My answer will be too long, but I've shopped around and feel like I've learned/fine-tuned things along the way, so here goes.

I began at sort of a community hospital in Dallas, mostly because that's where my gyno was affiliated with. I connected with an amazing doctor who is not like presenting at the conferences, but she so strongly views me as an individual and she is completely vested in my longevity. She has bent rules for me, which has gained me literally years of life. She is very intuitive and knows when to question other experts, e.g. the radiologists. She will always be part of my team, and when things move along toward the end, when expertise matters less (not that she's not expert), she will be the only member of my team.

I also went to MSKCC's main site in NYC for two years. It was definitly a bit less personal and I felt a bit like a statistic. I'm overstating...But I did that to have access to a trial that came and went (I was in too good of shape to qualify...then it ended...without success), but I really liked their scan machines, i.e. true PET/CT, i.e. both "diagnostic". In Dallas, when I get a PET, the "CT" portion is about lining up images vs. truly viewing and measuring tumors. Many of the people who work there don't even know the difference. But at Sloan, I was getting great info. PLUS, every single human who worked there, from the receptionist, to the phlebotomist, etc., was intellgient, professional, knowledgable. I do not find the same to be true at my Dallas facility, but I put up with it for the doc, and I've learned enough to overcome some of their shortcomings.

My doc left Sloan to return to Ireland, her home country, and I think it's very much a rotation scenario. So I re-evaluated my treatment and stopped going there, in part because I did not want so much of my travel to be about scans/docs/etc. I'm much happier in NY just socializing!

Then I took up with my sister's oncologist at Duke, in Raleigh/Durham, NC. She'd spoken highly of him and I knew it was a "comprehensive cancer center". Let me highlight this: In the US. the National Cancer Center designates some hospitals as CCC's. They get the most research dollars, best equipment, etc because they are the best research hospitals. Here's a link to a tool that helps you find them:

cancer.gov/research/nci-rol...

If that doesn't work, just google "comprehensive cancer centers US".

I do feel that it's the best of both worlds. For example, I get a full/diagnostic PET/CT in a 10 minute scan. Last I heard, there were 6 of these machines in the country. They participate in many/most of the best trials, and my doc seems to be willing to do "trials of one" if appropriate. Plus it is a very human experience...not sure how else to phrase it. My sister, similarly afflicted, has been going to him for 10 year and now me, about one year. We both love him as a person...

His name is Dr. Marcom and he's the head of research at Duke. He's "in clinic" just 3 days per week, and if you try to get into see him and have any trouble, PM me and I'll try to connect you. My sister and I fantasize that he likes us because we are doing well (she's doing extraordinaraly well) and we help his stats. Not that we think he's overly motivated by this...

Let me mention this, too: I've kept my Dallas doc all along. I don't make any decisions without consulting her. There is a real benefit to having two, e.g. different perspectives and you can choose to take whoever's advice you prefer, if needed. BTW, they're accustomed to being primary/secondary onc, second opinions, etc. So there are no hard feelings...

BUT, I feel like you were maybe asking about less traditional doctors? I've brought up the topic of less scientific additional regimens, e.g. vegan diet, fasting, FIR, with both Dallas and Duke, and they were both open to the discussion. Dr. Marcom, at Duke, was a bit more engaged, e.g. noted that if I fasted for 2 days straight it might be more helpful. But in terms of doctors who actually include non-traditional treatments in their protocols, I don't know of any. I feel like that is self-taught, self-administered, unfortunately.

But I think the key things are to feel free to engage multiple docs/resources on your "team" and to keep trying until you find the ones with whom you connect, and to whom you really matter. My Dallas doc is almost like a friend now...that helps me a lot, not only medically but also in terms of my comfort level.

Please do let us know where you land...

Very best,

Lynn

[Hidden in reply to Hidden]

** National Cancer Institute...NCI...not National Cancer Center**

[PJBinMI]

I don't know where you saw negative reviews of Dana Farber, but I would be leery of that source based on that! Dana Farber is one of the top Cancer Centers in the Country and has several well known bc specialist oncs. I went to a conference there several years ago, an MBC conference, and was quite favorably impressed by the oncs from DF who spoke. The top cancr centers in the US and those designated "Comprehensive Cancer Centers" by the National Cancer Institute, part of the Institutes of Health in Washington DC. There is a list of those on the webpage of this group, over on the right side of the page, under "resources". They have specialized BC oncs who both see patients and do research. Most are affiliated with medical schools. My own local general onc suggested I get a second opinion at one of those, Uof MIchigan, just after initial staging, and then just after she retired a bit over a year ago, my new local onc suggested I do that again. Both times I've appreciated seeing these specialists, and have come away feeling bouyed up and hopeful. I always suggest that anybody with cancer see a specialist onc as soon as they can. IF you let us know where you are, there is likely somebody here who has been to one of the CCCs in your part of the country. They are not spead evenly across the country but f or many of us, they are within driving distance.

[Aimee95]

Thank you ladies for all of your input. I had several days off as I was fighting off a cold and I got to feeling like I'm not doing everything I should with my current oncologist. Very disheartening to not be able to start trials because I'm not sick enough... I don't want to get sicker and closer to death in order to qualify for these trials. I have MBC to both lungs, a rib and chest lymph nodes. Chest lymph nodes have resolved, lungs are unchanged but no new lesions, the tumor in breast can no longer be felt. I never had a mastectomy and I keep thinking I want to get this diseased breast off my body. Perhaps I am being overly dramatic and should just be thankful I am doing well right now. I know most studies say that a mastectomy doesn't prolong life however for someone in my current position/diagnosis (type/age/race) it actually would be beneficial. I looked at cryoablation with Dr. Williams in Mexico but don't have a spare 30k to spend. When they did my lung biopsies they couldn't find cancer in any of the samples but based on the scans they said it is likely breast cancer. they said finding lung tissue infected with Cancer is like trying to stick a needle in a wet sponge you may or may not get a tissue sample that has cancer in it. I question that analogy considering both lungs are full of it. Then I worry what if it's not breast cancer what if I have a different type of lung cancer and not getting the correct treatment. Maybe this is why there's been no change in my lung lesions when everything else has responded really well to the treatment. whenever I try to talk to my oncologist about these issues he just makes me feel as though I'm being unreasonable. Bottom line is....as all of you all know....this really really sucks. My sex life is down the toilet, I feel bad for my wonderful husband, and wish I didn't have to drag my loved ones down this road with me.Tired of waiting for the other shoe to fall and sometimes just wish it would just hurry up and get over with. I appreciate everybody taking the time out of their day to give me their opinions. Hugs to all my fellow warriors.

[Hidden in reply to Aimee95]

Aimee — it is so understandable that you feel you should be doing “more.” I expect we all think there must be something else we could or should do when we deal with MBC.

It sounds though as you are already doing so much already, and have experienced success so far. May I lovingly suggest that you find a therapist to discuss how overwhelmed this can make you feel? I myself have always been a problem solver and have worked hard to recognize that I can’t control all things. It’s helped me to periodically talk with a counselor to release this kind of tension.

As for the mastectomy, as I’ve posted before on this topic, unless there is some other issue like serious pain from the tumor itself in your breast, avoid the surgery. I had one in 2004 and they are quite invasive. Yes, that was 15 years ago but the scope is the same. It’s painful, it can result in restricted range of motion afterward, and the drain they insert really hurts. I appreciate your need to “just” get rid of it, but a mastectomy is not the solution for MBC. The meds you are taking are designed for MBC specifically. Hope this helps.

[Mimigram]

I connected with Dr Rosenberg in Florida. You can look him up on the Internet and read his bio and videos. I also see my oncologist.

[Aimee95]

Thank you very much for your insight especially with my lungs. In my head it makes sense but my heart is absolutely looking for a branch to grab onto for dear life!!

[Hidden]

Nicely said. I’d like to candidly add that finding a good lube helps for sex. We remain women after all! My doc is good about answering when I ask personal questions. I think some doctors don’t raise it unless asked because it’s so intimate, but they definitely know about options in this regard.

[Lordmandy]

MD Anderson.

[tab78FN]

Agree, the lack of estrogen really plays a number on us. My husband and I have found coconut oil to be very effective as a lubricant for sex. I like that its natural, cheap, and readily available at the grocery.