Working with second opinion oncologist + local oncologist

[HelenWi]

I recently got a second opinion from a breast cancer oncologist a comprehensive cancer center that’s 45 miles away. She said that she can continue to be involved and work with my local oncologist. Has anyone been in such an arrangement ? I’m wondering how that typically works. Do the onco’s work together or do they give opinions and the patient sorts it out?

[2Hopeful]

I go to M D Anderson in Houston (6 hour drive) twice a year for scans but also have a local oncologist. All the info from M D Anderson is shared with him and so far both have agreed on my treatment plan. Had checkup last week and still stable on Ibrance and Letrozole after taking it 3 1/2 years. Diagnosed metastatic 9 years ago after original diagnosis in 2001.

[HelenWi in reply to 2Hopeful]

Great that Ibrance has been so good for you! And that oncologists agree on treatment. Thank you for sharing your experience.

[Chamisa]

I also go to MD Anderson (and also have a six-hour drive) every three months for scans. I originally went to my local oncologist, who is affiliated with an NCI comprehensive cancer center, but she wanted me to also go to MDA for a second opinion and also so that I would be in their system for a speedy entry into trials if need be. I actually chose (I did have a choice, I was specifically asked how I wanted to proceed) to go with the MDA doctor for my treatment plan and my local oncologist helps implement that plan. They can both see all my records.

When I first went to MDA, I went often, at least once a month but sometimes every three weeks, but as they stabilized me they changed my visits to the three-month scans. My appointments with my local oncologist are separate, on her own preferred schedule.

[HelenWi in reply to Chamisa]

Sounds like you have a good relationship with your oncologists. Great that they work together well ! Thank for sharing!

[Susan1953]

I also have been going to MDA for the past 5 years. I live in Alabama and see my local oncologist monthly for lab work which is sent to MDA. I go to MDA every 6 months now that I am stable on Ibrance and letrozole for 7 years. I have my scans done at MDA. I also have my zometa infusion done locally every 3 months

[13plus in reply to Susan1953]

Wow, 7 years on iBrance is amazing! I was on it for 3 yrs and was very pleased with that duration, although really it started to lose its effectiveness around 2 1/2 yrs.

[genealogy74 in reply to 13plus]

What were the signs that it was beginning to lose its effectiveness?

[13plus in reply to genealogy74]

My TM started to slowly climb (for me they have always tracked in the direction of my cancer) and then I was getting some new muscle/nerve discomfort around my hip. I went to a hip surgeon for advice on how much active movement (which I teach) was safe for me to do (lesions already existed in the pelvis), and his required MRI showed considerable new lesions that a CT scan, about 2 months before, had failed to show. I think I was also starting to get new random bone pains in other parts of the pelvis in the time leading up to seeing him. I stayed on iBrance a bit longer, based on how I was feeling, which was still very good at that time. My doc wanted to stretch out my time on it

[HelenWi in reply to Susan1953]

So great that you’re stable! Thank you for sharing your experience!

[diamags]

I go to Northwestern every 4 months for scans and have been doing so since I was diagnosed in 2013. I get my monthly shots by my local onc. It was a little tricky here and there, but it is doable. Some of the ones where I live got upset that I would take my direction from Chicago, but I've found one who views it as a way to see what the leaders are doing, so it works well. I think it's important that you make a decision of who's in charge of medical decisions and stay consistent. Otherwise you'll end up with dueling egos. It can be uncomfortable sometimes, but I find it works for me.

[HelenWi in reply to diamags]

Yes, I was thinking that my oncologist will benefit by getting input from a *breast* oncologist who is also involved in trials and sees many bc patients. Thanks for the advice regarding deciding who is in charge. I love my onco but I know he has an ego. So I will find out next week how this will all work out. I am meeting with one, then the other to discuss my scan. It will be interesting to compare.

Many thanks for sharing your experience and advice.

[13plus]

I go to a local hospital but have been to Penn, a 2hr drive away, for second opinions/ check ins a couple of times over a few years, and then joined a trial at Penn for about 6 months. While on the trial it was all Penn but I kept my local oncologist updated. Recently I had to go back to Penn for their next-treatment advice when there was some upheaval at my local hospital. They both have access now to my medical records.

It is great to get a second opinion at different stages of your journey, as needed, and it is even better to establish a relationship with another oncologist!

Case in point with me: (But hopefully a rare situation) my regular oncologist never returned from her holidays, (something has obviously happened to her as she is still regarded to be coming back at some point), and I was not getting looked after adequately by the newly assigned doc (who did not know me) and team, at a very critical time for me needing to change treatments.

It was great to be able to visit Penn where they know my journey already, to discuss all my questions, get thorough answers, and be reassured. She ended up calling my local place to tell them that she had advised me to go ahead and start with said plan. Then it was back to the local hospital again, after filing a complaint with management and getting them to get their act together, to get things back to how they should have been all along.

Anyway, the docs should not have a problem working "together", as in sharing their thoughts, etc, and then it's your choice who you regularly see. It all works out as to who is doing what for you! During the trial I even ended up switching back to my local hospital for the scans (Penn was reluctant but allowed it in the end) and Xgeva shots, when I realized how much it was going to cost me to do those at Penn ( not all costs were covered by the trial).

[HelenWi in reply to 13plus]

Thank you very much for sharing your experience. It’s good to know that there are different ways of working with two oncologists.

[ba5083]

I'm guessing my case is a little different. I go to a NCI in Georgia to see a traditional Oncologist and also have an integrative/metabolic Oncologist. They work well together and share tests, procedures etc. I actually left my primary or 1st traditional Oncologist from a different hospital because he was unwilling to listen to my integrative/metabolic Oncologist's recommendations. When I say not listen I mean not even take into consideration my integrative/metabolic Oncologist's suggests even though he could not explain why. So far this recent partnership has worked out well for me.

[HelenWi in reply to ba5083]

I’m glad it’s working well for you now. I’d love to hear a bit about what you integrative oncologist has added to your therapy. I just signed up for three two hour small group sessions with the integrative oncologist at UCSF — this is also where I’m getting my second opinion.

[ba5083 in reply to HelenWi]

I just had my quarterly consult. My blood work is looking better. He requests far more extensive blood work than the traditional CMP/CBC that includes, magnesium, Vitamin D, Cortisol, fasting insulin, glucose, A1C and some other tests. My WBC has been low since my treatments started 2 years ago along with the medication (s). He would like me to be exercising more to help increase my WBC. I a only able to exercise 2 sometimes 3 days a week (currenting work 4 - 10 hour a days). With the off label drugs/scripts and supplements he has been able to bring my bloodwork into normal ranges except for WBC. The focus is to exercise everyday only if for 5 minutes at a time to try and reach a total of 30 minutes a day. This could be walking the steps at my house 3-4 times in a row before work. 5-10 minute walks during my 30 minute lunch etc. Concentrating on electrolytes along with Aloe Vera (never dreamed) 1st thing in the morning. Since working with an integrative Onc my Metabolic health has seen a big improvement. Many define metabolic health as within range on these 5 requirements 1. BP 2. cholesterol 3. triglycerides 4. BMI 5. waist circumference.

[HelenWi in reply to ba5083]

Thank you!

[PJBinMI]

I'm a long timer and my (now retired) original onc was actually the one who suggested getting a second opinion from a bc specialist onc. It's worked well for me. And I'm still here after 20 years with MBC. I hope it works well for you. I think it tells you alot about your onc if they can work cooperatively with a super specialist!

[HelenWi in reply to PJBinMI]

Thank you! I’ll soon find out. I like my onco very much, have been with him since initial diagnosis years ago. But there’s so much happening in the MBC world, a general onco doesn’t have time to stay on top of it. Plus they don’t see as many bc patients. XO

[DianaTrapani]

yes! My local oncologist confers with one at a teaching/research hospital about 2.5 hours away. Together They make a great team. In fact I needed to see a pulmonologist and couldn’t get into one locally for 3.5 months. Boom, the consulting oncologist had me a video appointment in three days. This pulmonologist had me there 1.5 days later so perform the bronchoscope and lung biopsy (neg for lung Mets) !!!

I think having a second opinion working with the local oncologist is great!