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Radiation oncologist #1


LexieCat

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Today I met for a consult with radiation oncologist #1, at my primary treatment center (MD Anderson-Cooper). I liked him VERY much. He looked so darned YOUNG in his pictures, but much more mature with a mask on, lol (I like to think I look younger with the mask on, but my COVID gray roots give me away).

He was immediately fine with my recording the visit--and also offered to do a conference call (which I'll probably do once my daughter is here). I liked his manner--he started off by asking me to tell him about myself and what I was thinking about in terms of what I was hoping to achieve. I explained my understanding of what's possible and what we hope will happen and that I understood there were no guarantees and my hope was to have as many good years of my life as I could. He said, "Oh, wow, you're the IDEAL patient!" 

I told him I believed the molecular studies were back but that I hadn't seen them. He looked them up and told me I have no mutations (boo) and a PD-L1 level of 5%. 

He thought I was a great candidate for radiation therapy and that he thought we could go at this with curative intent. He discussed with me the possibility of doing chemo/immunotherapy concurrently with radiation, but he said his thought was to do the chemo/immunotherapy first and when chemo was done, start radiation. His rationale was that chemo might reduce the tumor and lymph nodes to the point where there would not be so much radiation to the esophagus. He put up the PET scan so I could see where the tumor and lymph nodes were in relation to the esophagus and explained that doing the chemo first might reduce the likelihood of a large portion of the esophagus being hit with radiation. He said the sacrum would be separately radiated with SBRT.

I told him I was going for a consult with RO #2 (Penn Medicine) next week because I wanted to see if there were any benefit to proton therapy and also just to get another opinion. He said he'd be very interested to hear what they have to say--no defensiveness whatsoever. He said he tended to think proton therapy might not reduce the risk of side effects much but he encouraged me to find out. He also said he'd be happy to discuss my case with RO #2. 

I mentioned that I had been offered chemo after surgery but turned it down. He said he thought he would have made the same decision. He also said he thought there was a good chance this wasn't a recurrence of the original cancer but an entirely new one.

So I have to re-listen to the recording and make some notes, but I think that was most of what we talked about. I'd feel very comfortable with being treated by him. He talked about the results of various studies and trials and spoke to me as a well-educated patient. I felt like we had good "chemistry"--which really helps. 

Next week I meet with my oncologist on Tuesday (can probably plan to start chemo/immunotherapy, schedule procedure to insert the port) and then with RO #2 on Friday.

Now that all the testing's done, I'm anxious to get going with this.

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Sounds like a great meeting!  So nice when you have that chemistry with a doc.  It will be interesting to hear what, if any, difference of opinion there might be with RO#2.  Luckily, you’re almost through with the waiting game and can actually start doing something!  

Susan

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The doctor sounds really positive and confident. It's always important having the right doctor. It's fantastic he wants to treat you with curative intent! There's always a silver lining. You sound like a super positive and strong person. 

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So glad you had such a positive meeting!  When I told oncologist at my first consult that I had a 2nd opinion scheduled he was ok but also a little snarky (suggesting they didn’t specialize in lung cancer)  I went with my second opinion.  
The fact that he said it’s probably a new cancer!! that blows me away!  
Carry on and soon you will be starting your fight!

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Teri,

Sounds like RO#1 has his ducks in a row. I like the multi-echelon approach: fry the sacrum w/SBRT, then chemo/immunotherapy and more precision radiation if needed.

Hope you join us in zoom so you can tell us more.

Stay the course.

Tom 

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Tom, that's not exactly what's planned. He's talking about regular (not precision) radiation to chest--it's too large an area, apparently, to do precision radiation. But yeah, he struck me as very smart, knowledgeable, and flexible--not to mention friendly/helpful. TBH, I like him better than I do my oncologist, who isn't an old guy, but is more formal/stuffy in a way. I had to correct him (my medical oncologist) at least twice that I am NOT a "Mrs."--either "Ms. Garvey" or plain "Teri" is how I would prefer to be addressed. He's nice enough, but not as good at putting me at ease.

I'm not positive I will make zoom tonight--kiddos are getting in this weekend and I've got the place almost habitable but still have some last-minute things to tend to. I'll stop in for a bit if I can. And next is iffy too, just because my son will be heading home next weekend. After that, though, I should be able to make most of them.

 

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Hey Teri, 

I hear you on the oncologist and social skills.  For about five months I seriously considered firing my oncologist because he presented like a cold fish with no social skills. Here in KC there aren't a lot of options (I was already at the only NCI) and he was "one of the three" lung cancer experts in the Metro.   Then I read this Tom Brokow article which really spoke to me: 

https://www.survivornet.com/articles/anchorman-tom-brokaw-advises-other-cancer-patients-you-dont-have-to-like-your-doctor-just-get-to-the-best-one/

The two other doctors, one was at a non-NCI whose personality wasn't much better and the other doctor was really wonderful, however his nurse was a special breed of mean.  So I stuck it out with my guy.  I'm glad I did.  It took him about a year to warm up to me.  I laugh at his feeble attempt of humor now.   

I think some of these bright lung cancer oncologists are just missing some basic social skills, that's okay in my book as long but it took me a long time to get there.  Enjoy the kiddos!

Michelle 

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I’m so glad that you had a good rapport with your Radiation Oncologist. It’s so important that you find someone who makes you feel comfortable and allows you to express your opinions about the course of action you want to take. It sounds like you have a great deal of knowledge about lung cancer and what can be done to treat it. I wish I knew half as much as you. I hope all goes well for you now that you are getting the ball rolling with your treatment plan. Enjoy the time you will be spending with you children. I’m sure you are super excited to see them.

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Teri, 

I know it’s so hard to meet a new doctor.  I’m finding this out for sure.  I bet they don’t have too many patients that are as smart as you, so they are probably taken aback.  Sounds like you found a kind, confident doctor for you!! My thoughts are with you Teri!! I know you will do great!!

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Lexie

 This oncologist sounds like a keeper to me.  He seems to have checked all the boxes and even looks forward to input from other opinions.  I know we should expect this from our doctors, but we don’t always get it.  I’m glad you did.  
Lou

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"He thought I was a great candidate for radiation therapy and that he thought we could go at this with curative intent."

I was happy to read the "curative intent" part here...

So glad your consult went well! The RO sounds like a good fit and his vision for this is clear and makes sense. I'm glad you felt respected. You ARE on top of this - and educated - and he recognizes this. He sounds professional and in tune with his patients. Glad he didn't get snarly over your desire to still get a second opinion. 

Wish my local cancer clinic could behave the same way.  I have my second opinion/tele-med consult tomorrow with an RO in Seattle. Got a call from the local nurse navigator last week - she was following up with me about scheduling my radiation tx's with the first RO I met here... which I had said, at that appointment, that I was not ready to schedule; that I would be getting another opinion. She was a total you-know-what when I told her I was still planning on getting that 2nd opinion. She got very snippy with me! I should post about that call just to get it off my chest... it had me in tears this past week... I was really shocked to be treated that way.  Sounds like you have access to excellent care and providers!  I wish we did locally. At least Seattle isn't too far; just difficult if I can't drive myself and with COVID right now... if I need to stay in a hotel, etc.

You are very positive, Teri, and your humor is still coming through. I had to laugh at the doctor who calls you "Mrs."... I get it! I feel the same way :-)

So happy to hear your kids will be with you... :-)

 

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@ColleenRae my best friend is a nurse (charge nurse neuro) at a local hospital and talks about how patient satisfaction drives their income. You need to make a point to call out the snarky nurse. I understand that we all have bad days but that is unexceptable. I hope your second opinion goes well.

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