PET Scan Results - Dr. Recommendations - Still "Interviewing" Surgeons!

[ColleenRae]

Hello All!

I just had my first PET Scan last Friday, 8/24, and obtained the results today (will be discussing the results with a local surgeon I'm meeting tomorrow for the first time).

As this is all new to me, I am doing my best to try and research and understand the radiologist's report.  Here goes:

Impression:

1. Hypermetabolic central right upper lobe nodule suspicious for carcinoma. No significant change in size since prior exam 4/16/2018 (Which is odd as my last Lung CT was 07/18/2018. Also, this report states nodule is 8mm and last lung CT said 10mm...).

2. No evidence of metastatic disease.

For some reason, I was relieved and happy with the results... It just confirmed what has and continues to be suspected - that the tumor is probably cancerous (the SUV max  was 3.7.  I believe, from the quick research I did, that anything above 2.5 is considered to be indicative of malignant tissue).  No, I'm not happy this is looking more and more like cancer, but I was glad to see no evidence of metastatic disease.  Is this very reliable for a PET Scan?  I keep reading about the false positive /false negatives... just hoping it's accurate with regards to metastasis!

The Lung Navigator Nurse I'm working with locally said they discussed the PET Scan results at their chest conference this a.m.  There was an "interventional radiologist" in attendance who feels he CAN do a CT biopsy this nodule. I've been told by the Lung Cancer Screening Clinic (Seattle Cancer Care Alliance/SCCA) and UWMC (Univ of WA Medicine) that due to the size and LOCATION of this nodule (the PET scan says it's in the "perihilar location") that it could not be biopsied - that my only option for a biopsy / treatment is a lobectomy.  The local chest board here in Bellingham believes I should explore the biopsy before having any invasive surgery performed.  I just don't understand why SCCA / UW said a biopsy would not be possible.

I am meeting a local surgeon tomorrow who will discuss more of this with me.  My pulmonologist referred me to him - he is a cardio thoracic surgeon but has not done a lot of lobectomies. Apparently he has a lot of experience with cardio. I'm seeing him in spite of this to get his opinion.  I will be seeking a 3rd opinion from another Cancer Clinic / Hospital in Seattle the day after labor Day. Meeting with a skilled thoracic surgeon that day.  I'm getting nervous as so much time seems to be passing and I'm still no closer to making a decision that I was in mid-July. I'm sure I'll have to go with the lobectomy, just want the right surgeon.

I received a call (in response to an email I sent) from a student / P.A. at UWMC.  I advised the surgeon / UWMC that I decided to have my PET Scan done locally last week versus driving to Seattle for the scan in mid-September when they scheduled it.  I had met with this P.A. student prior to meeting with the UW surgeon.  I just didn't feel a connection with her or with the surgeon. I felt rushed. I felt like a number. I felt like I was simply being viewed as a good candidate for their program stats.  I only spent 35 minutes meeting with this surgeon and I still have a lot of questions. The P.A. was a little snippy with me when I said I'd like to go over some more things with him before making my decision, saying "He already went over all of this with you when you met him".  That did not go over well with me - I really wanted to say something to her, but bit my tongue.  She wasn't even present in the room when I met with him, so how would she know what we really talked about?!  I just want to feel comfortable with my surgeon and to feel like he or she really cares about me, the patient, and how this could affect me and my life.  I'm hoping the 3rd surgeon I'm meeting on 9/4 will be the charm... although I'm not sure who has the better reputation for this type of surgery. This 3rd surgeon has high marks / reviews that I've found online - a bit higher and more so in some areas than the Dr. at the UWMC. But, the UW hospital has higher ratings than the hospital where the 3rd surgeon is connected.  Ugh.... so many decisions!

Apart from all of these appointments, I'm trying to walk more now that the wildfire smoke has moved out for a bit. It's the only thing that really keeps me calm (that and hugs from my son!).  My son has been a great source of comfort for me. We're plugging along here and bracing ourselves for what's to come as best as we can.  Thanks to all who "listen" here. It does help.☺️

[LexieCat]

Personally, I would want a thoracic surgeon who has done a lot of lobectomies.  That said, lobectomy isn't a terribly complicated surgery.  I'd definitely want someone who has significant experience performing VATS surgery.  That's a specific skill and unless your nodule's characteristics won't allow it, you want to avoid having the "open" surgery if at all possible.  My surgeon told me exactly how he would proceed--he'd do a wedge resection to remove the nodule, have it rushed down to the lab for examination.  If it isn't cancer, that would be it.  If it is cancer, then he would remove the lobe and lymph nodes for further exam.  He told me that if something went wrong (e.g., uncontrolled bleeding), there would be a possibility he would have to convert to an open incision to control it.  

If there's a cancer center nearby, they would be likely to have thoracic surgeons on staff who do lots of VATS/robotic lobectomies.  (Robotic is basically the same, just different technique--it's a matter of preference for the surgeon.)

You won't spend that much time with your surgeon--really just a followup after surgery.  So feeling warm and fuzzy about your surgeon is a bit less important than for someone you would be seeing regularly.  You obviously do need your questions answered and to feel confident about his/her skills, but the personality factor is a bit less critical, I think.  

PET scans aren't foolproof for detecting metastasis, but it's about the best tool available.  That's why, even after supposedly curative surgery, you might have chemo or, as in my case, close monitoring for a few years.  Your nodule is small, which is a good thing.  Size sometimes varies slightly from scan to scan depending on the angle of the image.

And doctors do sometimes disagree about the feasibility of biopsy.  My own surgeon, though, felt that the appearance and characteristics of my nodule were suspicious enough that even with a negative biopsy he would want to remove it.  That's experience and judgment.  I had a ton of confidence in my surgeon.  

[LexieCat]

Oh, I missed the part about seeing the surgeon at the cancer center in Seattle.  I'm thinking that's going to be your best bet for someone who will know the latest techniques and be experienced in surgeries for lung cancer.  Plus they will have a tumor board, most likely, who will meet to figure out the optimal followup.  

[Laurel]

I met with my surgeon at M D Anderson on a day when there was snow and ice in Houston, Texas...a rare event. Dr. Rice had late morning appointments doubled up, yet you wouldn't know it. He spent as much time as I needed until he had answered all my questions. He is a Thorasic Surgeon with extensive VATS experience. I was given a list of his staff and who to call to answer what type of question. His staff was always supportive and responsive. My VATS in February 2018 removed the top right lobe of my lung and 13 lymph nodes, 4 cancerous. The surgery and recovery went smoothly. You should expect to be treated with care and compassion.

 

[Steff]

Living in the Wenatchee area, we don't have a lot of options for 2nd and 3rd opinions unless we travel 3-4 hours.  Luckily, our local Confluence Health clinic is a part of Seattle Cancer Care Alliance and has excellent surgeons.  That being said, VATS was not an option at the time in Wenatchee and we didn't know much about it back then.  At least in Wenatchee, it seems that if the surgeon is excellent, he/she is often a bit odd.  My mom's thoracic surgeon is very odd and has the WORST patient relations.  He is too smart for his own good and just cannot seem to be able to connect with us "commoners".  He has had me in tears several times, but he is good at his craft and my mom has received excellent care from him.  We realize there will never be any kind of connection with him, but accept that because we know he is good at what he does.

You are the customer, so you should get what you want, but if it were me, I would not be putting a "connection" with the doc before his/her reputation as an excellent surgeon.  We had to put off my mom's surgery for 2 months because she was on a RA drug that needed to be out of her system prior to the procedure.  That was an uneasy feeling since we knew that the cancer had the possibility of spreading during that time.  Thanks to a biopsy, we knew that the cancer was relatively slow growing (NSCLC adenocarcinoma) but one can never know if/when cancer will spread.  So it was important to us to have the lobectomy done asap.

Hopefully you find what you are looking for in a surgeon relatively soon so you can move past this stage of the journey.

[ColleenRae]

2 hours ago, LexieCat said:

Oh, I missed the part about seeing the surgeon at the cancer center in Seattle.  I'm thinking that's going to be your best bet for someone who will know the latest techniques and be experienced in surgeries for lung cancer.  Plus they will have a tumor board, most likely, who will meet to figure out the optimal followup.  

Thank Lexiecat... Agree with all that you have said or suggested.  Appreciate your input.  I think it will be a toss up between the UW surgeon and the Swedish Cancer Clinic surgeon. Both have VATS experience, so I'm fortunate to have access to this. Yes - warm 'n fuzzy isn't the priority here (ha!) but I do want to understand what their plan is for me. Thank you!

[Tom Galli]

CollenRae,

I've been told I don't have a personality and it is likely true.  I've also been told I am a excellent civil engineer, hopefully true.  Often people with special, intellectually-based skills are introverts.  We are "things" people because "things" don't talk back. We care deeply about people and outcomes; we just have a hard time talking about it or showing it.  In today's world of over-the-top personalities, social media celebrities, and self promoted hype, one will not likely find skilled medical specialists or engineers.  

You have but one concern.  Can your tumor be biopsied?  If it were me, I'd ask that question and keep asking it till I got an answer.  A two-part answer is required.  Yes or no and a reason.  You should understand the reason.  Even an introverted interventional radiologist or thoracic surgeon ought be be able to provide a reason that you understand.  "I believe it is too risky" is an answer and a valid one, however it is an answer for one doctor, not all doctors. 

Keep in mind that medicine is not a science; it is an applied science.  The applier is the physician and application techniques vary.  Most of the variation stems from experience.  Therefore, if one goes to an interventional radiologist with a biopsy question, the answer is likely to be a needle biopsy. A thoracic surgeon will likely suggest a surgical resection.  A VATS experienced thoracic surgeon will likely answer a VATS method and so   All may be right.  You have to choose which of these methods you feel most comfortable with.  How do you choose?  Although I didn't do a deliberate decision analysis at the time I chose my surgeon, retrospectively here are the characteristics I believe important.

I can't begin to tell you how to make this decision.  There will be uncertainty regardless of the method or doctor you choose.  If you have lung cancer, uncertainty and dealing with it will be a chore.  I can only say the uncertainty chore gets less burdensome over time.

Stay the course.

Tom 

 

[ColleenRae]

On 8/28/2018 at 11:05 AM, Tom Galli said:

CollenRae,

I've been told I don't have a personality and it is likely true.  I've also been told I am a excellent civil engineer, hopefully true.  Often people with special, intellectually-based skills are introverts.  We are "things" people because "things" don't talk back. We care deeply about people and outcomes; we just have a hard time talking about it or showing it.  In today's world of over-the-top personalities, social media celebrities, and self promoted hype, one will not likely find skilled medical specialists or engineers.  

You have but one concern.  Can your tumor be biopsied?  If it were me, I'd ask that question and keep asking it till I got an answer.  A two-part answer is required.  Yes or no and a reason.  You should understand the reason.  Even an introverted interventional radiologist or thoracic surgeon ought be be able to provide a reason that you understand.  "I believe it is too risky" is an answer and a valid one, however it is an answer for one doctor, not all doctors. 

Keep in mind that medicine is not a science; it is an applied science.  The applier is the physician and application techniques vary.  Most of the variation stems from experience.  Therefore, if one goes to an interventional radiologist with a biopsy question, the answer is likely to be a needle biopsy. A thoracic surgeon will likely suggest a surgical resection.  A VATS experienced thoracic surgeon will likely answer a VATS method and so   All may be right.  You have to choose which of these methods you feel most comfortable with.  How do you choose?  Although I didn't do a deliberate decision analysis at the time I chose my surgeon, retrospectively here are the characteristics I believe important.

I can't begin to tell you how to make this decision.  There will be uncertainty regardless of the method or doctor you choose.  If you have lung cancer, uncertainty and dealing with it will be a chore.  I can only say the uncertainty chore gets less burdensome over time.

Stay the course.

Tom 

 

Hi Tom,

Thanks for taking the time to post... And, for what it's worth - I think you have a great personality that comes right through here on these cyber pages!  With regards to "Often people with special, intellectually-based skills are introverts.  We are "things" people because "things" don't talk back. We care deeply about people and outcomes; we just have a hard time talking about it or showing it" - THAT I can totally relate to having a son / child on the Autism Spectrum (formerly Asperger's). That description fits him exactly.  Just a very thoughtful response you gave... and a good thing to keep in mind when dealing with the type of doctors I'm encountering in this situation. 

To clear things up a bit for those who have read this so far - I'm NOT concerned about having a surgeon with great bedside manner or one who is jovial or warm 'n fuzzy.  I actually prefer and do better with - in this type of situation - with someone who won't **Word not allowed** foot around with me, doesn't speak down or condescendingly and is direct and to the point.  That is what I prefer.  What I don't want is someone who flies through an appointment without giving me a chance to ask questions, who skirts / evades my questions or completely ignores them.  The first surgeon I have consulted with / was referred to from Seattle Cancer Care Alliance was pleasant enough but did not answer all of my questions. I seriously recall thinking during the appointment that I was meeting with a salesman vs a surgeon. Since that meeting I have had no contact with the surgeon - he has been on vacation.  I contacted his office staff via their patient portal with questions and received a call back from a resident P.A. student that I had met at my first appointment to see the surgeon.  I have an upcoming appt. - supposedly with the surgeon again (he's been on vacation) to discuss the PET Scan results, followed by a pre-op appt with anesthesiology. I asked this P.A. if I would be seeing the surgeon again - I wanted to confirm that I would be seeing him (after all, it is a 2+ hour drive for me - I don't want to drive all that way and spend 15 minutes with a student). She asked what questions I had. I started to list them (I have them adding up in a notebook) and she said she'd have to defer them for the surgeon and then said "he already answered all of these questions for you when you first saw him".  I bit my tongue but wanted to say how did she know that? She was not present / in the room when he met with me! But, I let it go.  I think it's this difficulty in trying to communicate with the surgeon / get some answers, that is bothering me the most about this referral to UWMC.  I don't need hand holding, but I do want to understand before I can make any informed decisions.

 

Tom, you also mentioned "You have but one concern.  Can your tumor be biopsied?  If it were me, I'd ask that question and keep asking it till I got an answer"... I am SO GLAD you wrote that! Thank you. Perfect timing.  I had my PET Scan last Friday. I met with a local cardio thoracic surgeon yesterday. He is quite experienced but tends to do more cardio than lobectomies (although he said he's done several lobectomies in the past month).  He reviewed the PET scan with me. The tumor lit up; nothing else. He said they discussed the test results at a weekly chest conference on Monday and the interventional radiologist that was present there said he is confident he can do a CT biopsy of the tumor.  I was shocked and, I admit, a bit suspicious. Both SCCA and UWMC have told me that due to the size and location of the tumor a biopsy could not be done.  The surgeon I met with yesterday is encouraging me to have the biopsy done. He did explain the risk(s) (bleeding, lung collapse, slight chance of spreading cancer cells). He did explain that the biopsy may be inconclusive and I would need to proceed with a lobectomy.  BUT he also said that they are all a little concerned - which is why they are encouraging me to have the biopsy - because this tumor is so small still (8mm) the SUV max was really high for a slow growing tumor of this size - according to the surgeon. He said it is more than likely malignant, but it is still possible that this lit up and is not a cancer but some other infection. He said he would much rather see me get this biopsied first - and hopefully get a conclusive result - before moving onto the next stage of invasive surgery.  That is the first time anyone has said they'd be able to at least try to biopsy this... so much for the "big guys" in Seattle - unless this interventional radiologist is wrong. I am now scheduled to meet with him for a consult this Friday. Next Tuesday I still plan on meeting with another experienced surgeon in Seattle (good reviews). I am supposed to go back to the UWMC on 9/13 but not sure I'm going to continue down this path with them. 

I am torn regarding considering the local cardio thoracic surgeon we have here locally. He came here from Duke to set up the cardio program at our hospital over 20 years ago. He was a surgeon on a show for the Discovery Channel for several seasons, seems to be very experienced.  Our area just isn't "known" for lung cancer treatment since Seattle is hovering right down the Interstate from us... but a lot of our doctors, radiologists, etc. were trained at the U of WA.  I've never really been a big "name brand" shopper or one to wear logos... ha! One thing that has also stood out for me is that this local surgeon was much more up front with me regarding the surgery and what could happen. Due to the location of the tumor, he said he would definitely approach this via VATS if I choose to go forward with surgery. He did say he can't guarantee that he would not have to switch to a classic thoracotomy, which I understand. The new info he gave me though was that this tumor is located in the right upper lung right where all three right lung lobes intersect. He said there is the chance that I may require a bi-lobectomy (have two lobes removed) and possibly even the entire lung. He explained about the location, "margins", etc.  I can't say this was good news at all, but I was grateful to him for presenting this reality to me - no one else at the lung cancer prevention clinic or the surgeon at UWMC ever said a word about this. All they told me is that a biopsy could not be done, nor a wedge - that a lobectomy of the RUL is what I would need. I would have hated to wake up from the surgery with only 1/3rd or my entire right lung gone without some prior warning!  I can see the benefit in consulting with / getting more than one opinion already.

So, I thank each of you once again for your time, input, wisdom.  While I'm not happy about our "connection", I am grateful that we have something in common and that there are so many of you who have made this journey who are willing to help those coming behind you... thank you.

I realize this is another long post.  Hopefully I will learn to be more brief in time.  I will post again after the consult with the radiologist who thinks he can biopsy this tumor... fingers crossed. It would be great if he could positively find out this isn't cancer and some other type of infection, but if he can confirm that it is cancer, that's good as well. I can move forward with the lobectomy then knowing that