Still a "Newbie" Researching Surgeons, TX, Internet, My Feelings / Denial

[ColleenRae]

I'm advancing here... Moved from the "newbie / introduce yourself" forum to NSCLC  

I have a lot of catching up to do, but not enough time. 

I was given a "preliminary" diagnosis based upon Lung CT in July of Stage 1a adenocarcinoma / BAC NSCLC at a Early Detection Lung Cancer Prevention Clinic in Seattle.  I was then referred to U of WA Medical Center to meet with a Thoracic Surgeon to discuss a lobectomy in less than a week following the lung CT. I was led to believe this was all due to necessity of what was found, and everyone seemed to think I'd be on board for surgery the first week in August.  I was in shock. I was in denial. I didn't feel qualified or ready to make a decision that fast and wanted time to research / decide if possible.  I then learned the UW surgeon was leaving for vacation, which was probably the real reason behind the urgency to schedule surgery (out of courtesy to me, I'm sure...!)  Sorry if I sound cynical - I'm just not that trusting with the medical community at all times.
 

In any case, I have been looking for additional opinions.  I have established myself with a local pulmonologist that I feel very comfortable with. He gave me referrals to a local Radiologist and a Cardio Thoracic surgeon for second opinions.  I have met with the radiologist and I will meet with the surgeon next week.  The radiologist said he wouldn't touch me with radiation until the tumor could be biopsied and definitely diagnosed. I respected him for that answer! Problem is, the tumor is too small to biopsy and I've been told the location is difficult as well and will require a lobectomy to remove it. The radiologist said he would first start with a PET Scan (despite the false neg's / pos's that can result). He also said if he was in this situation he thinks he'd probably have radiation vs lobectomy due to the complications and morbidity rates associated with the procedure... so that left me more confused.

The local cardio/thoracic surgeon I've been referred to is older (around 70) and has an impressive background - BUT very few lobectomies. Primarily cardio surgeries, so I'm already not feeling this will be the answer, but I'll be interested to get his opinion / viewpoint.

The first surgeon I met from UWMC sounds very qualified.  His office has / had scheduled me for a PET scan 9/13 in Seattle, with an appt a few hours later with the surgeon to review the results and another appt that afternoon with pre-surg/anesth.  I'm still not sure that's the route I want to go.  The told me it would be "better" if I had my PET scan at their facility.  My local Dr. said no - and the radiologist here said no - I can have it done anywhere.  So, I decided to have it done here this Friday.  I am already experiencing the all-too-familiar "scanxiety" emotions, but I'll be glad to get this done with and move forward.  My local pulmonologist said he will have the PET results ready to view / discuss at their Monday a.m. chest conference.  I've sent a message to the surgeon at the UWMC to let him know.

In addition, I have a 3rd consult scheduled with another highly regarded and experienced thoracic surgeon the day after Labor Day. So, I'm looking forward to that appointment as well.

I want the different opinions, but I also feel like I might be trying to stall the inevitable.  I don't want to deal with this. I don't want to acknowledge that any of this is real.  But I know a decision is around the corner.

I have been worried about the recovery (and now, even surviving!) a lobectomy.  I have worried as my 20 y.o. son (Autism) is taking fall qtr off from college to help me when I come back home.  I have also had a very generous offer from a married couple I know here - but not well - locally who have offered to take care of me in their guest room when I come back from surgery... I was moved to tears by their generosity.  I'm hoping I won't really need to take them up on their offer... I'm not used to asking for help. I like to give help if needed, but have never felt comfortable asking others.  This is a hard thing for me.  Psychologically, I am not a good candidate for cancer, being sick, needing help, etc.  Ha! Too bad. I have no choice.

I am afraid of the surgery and keep thinking maybe, if possible, radiation would be a better choice for me if they'll do it.  I've read that the OS rate is lower for radiation though.  Just scared that once I have this surgery, all will go downhill from there.  Right now I feel healthy (except for all of the wildfire smoke we're having!).  I'm still trying to pretend this isn't happening.

I also want to know is this or isn't this cancer? All indicators say that it is. But what kind? It sounds like surgery with lymph node dissection is going to be required to get those answers I need.

Sorry this is so long. I think I needed it more for me - a place to write this all down / to think.

I'm just going through so many emotions. I cry often; especially when I go to bed and first thing in the a.m. when I wake up.  I'm already tired from all of the research, phone calls, appointments, etc.  - and this is just the beginning!  My mood swings have been awful - one minute I'm fine and composed and then something will set me off - stress me out - and I'm a mess.  I got upset yesterday because I forgot something at the grocery store... I went into the bathroom and beat my hairbrush on the sink counter until I broke the handle off!  NOT like me at all to do this in the past.  But, I have to admit, it actually made me feel good when I broke it!  Maybe I need a boxing / punching bag... but then I wouldn't get to use it for a while after surgery, so better not waste the $!!  That's what I hate.. that's a perfect example... Now it seems I can't make any decisions or plan for anything in the future because I am always always reminded of what may lie ahead... Cancer.  I hate this. Whine. I know all of us do. Thanks for indulging me...!

 

[Cheryncp123]

Honey, slow down take a deep breath. You are going to get a lot of differing opinions from all these doctors and you are going to be more confused than ever. Without a biopsy there is no way to know if you even have cancer. If the tumor is too small to biopsy I am not sure why they want to do a lobectomy, that seems a little extreme to me. Once you get your scans you will first of all need to decide what doctor you are going to put your trust in and don't keep second guessing your decisions, that will just stress you out even more and you certainly don't need anymore stress. Has anyone mentioned a blood biopsy to you? If not ask about one. Please keep us posted, you are extremely fortunate that you caught this in it's early stages, that rarely happens with lung cancer. Good luck to you.

 

[BridgetO]

Hi Colleen,   Chernycp123 is right about slowing down and taking a deep breath!  You may not be able to get  definitive diagnosis without having a lobectomy. I wasn't. My nodule was small, but that wasn't the reason. Because of its location, they couldn't biopsy it by either  needle biopsy or with a bronchoscope. I decided to go with the lobectomy- partly because the pulmonologist (and the surgeon) thought the nodule looked suspicious due to its shape and also because I had 2 previous non-lung cancers and it was possible, though unlikely, that this was a metastasis from one of those.

My lobectomy, which included removal of a bunch of mediastinal (mid chest) lymph nodes, was done by VATS and was pretty easy, as far as surgery goes. Of course, any time there is general anesthesia there's some risk. But with a VATs lobectomy, it's pretty low. I have two recommendations if you have surgery - first, go with VATs rather than an open surgery (thoracotomy) if you can. It's less invasive and the recovery time is much shorter. If you're scheduled for VATS, they'll probably tell you that there's always the possibility that they'll decide for some reason in the middle of the surgery that they need to do open surgery. It's standard to tell people that- I don't think I know of anybody scheduled for VATs that ended up with the bigger incision, although I'm sure there are some. Second,  try to find a surgeon who has a lot of experience doing VATs lobectomies. 

Oh, and a third thing, accept the kind offer of the couple to take care of you after your surgery!  And enjoy the luxury of being taken care of by these kind people.

You say you're not a "good candidate" for cancer, because you're bad at being sick, asking for help, etc. I have those same issues, I am a carer rather than a caree. But as you say, no choice, you can't "decline the nomination".

I'm older than you (73) and I did well with my lobectomy and am now NED and I have a good quality of life, good lung capacity, everything is fine!  There's no reason to think you won't do at least as well. 

Hang in there Colleen, you can do this!

[Tom Galli]

Collene,

Cancer surgery (VATS or not) is pretty complicated.  I'd focus on finding a thoracic surgeon who is very experienced with lung tumor resections.  Surgery is more of an art than a science and the more surgeries performed, the higher the skill level and the intuitive understanding of tumor resection complexity.  How does one find a good thoracic surgeon.  Here is some of the qualities I think are important.

You have an early find and that gives some time for you to close on a decision.  Without a biopsy, how was adenocarcinoma determined?

I have a lot of faith in precision radiation.  My fourth line treatment was CyberKinfe, a form of SBRT persuasion radiation. Radiation oncologists are getting aggressive these days in frying tumors that were surgical resections just a couple of years ago.  Of course, there is the tricky placement of the tumor to consider. Here is information on the different types of radiation used to treat lung cancer.

I was also paralyzed by fear and uncertainty well into my 3 years of treatment.  I held most of the stress inside and became deeply depressed.  So be mindful of depression.  I note you've not mentioning a general practitioner or family practice physician.  I found mine an invaluable resource, calling my specialists and insisting on coordinated and coherent treatment plans.

Never apologies for a long post, not here.  This is the place to pour out your soul knowing full well that each of us has gone though what you are now experiencing.  We all start with a long post.  

Stay the course.

Tom

[ColleenRae]

Thanks (again!) to all who responded.

Yes, I do need to slow down and be more aware of breathing 🙂  I was obviously feeling rather stressed when I wrote yesterday and needed to vent somewhere.  I live in WA State and the smoke filled skies have been difficult (can't imagine how bad it must be for those living or working right in the midst of these fires).  My stress reliever has always been walking - and I haven't been able to do that due to the poor air quality for almost two weeks. Sleep is off, too, as the inside temp has been in the low 80's at night.  I am just grateful I did not have the lobectomy surgery the first week in August as the first surgeon I saw suggested... Recovery would have been very difficult in the present circumstances!

Bridget - Thank you for all that you wrote.  You are truly a gift on this site and I need you to know how much your replies have helped me so far.  I believe my situation may be similar to yours regarding not being able to get a definitive biopsy. My tumor is small (8-10 mm) which has been given as one drawback to obtaining a biopsy. The location is apparently another factor, probably for the same reasons as your situation.  A wedge is not possible either. I have been advised by one surgeon and my pulmonologist that lobectomy is the only way to obtain a diagnosis, with the caveat that this might not be cancer at all. 

The tumor has not grown much in size in almost two years of watching. Concern arose when Lung CT indicated it was moving from a GGO to a more dense presentation.  I just met with a radiologist this week for his opinion and he is on the fence as he said, after reviewing the scans, that the tumor is small and still has some GGO characteristics.  My first three CT scans were done where I live. The most recent one was done in Seattle at the Seattle Cancer Care Alliance.  The radiologist said it's possible that different machines, radiology readers, etc. could have influenced this. He's just not willing to zap this tumor unless he knows for sure that it is cancer, but without a biopsy, that's not an option.  The SCCA advised lobectomy is the only procedure; hopefully VATS. They are the ones who gave the initial dx of adenocarcinoma NSCLC Stage 1a for now. They did advise this could, understandably, change once the tumor is removed and biopsied, as well as lymph nodes.  The radiologist said this is likely a "BAC" cancer. Of course, I ran home and googled / devoured up all I could find regarding this type of cancer and did not feel any more optimistic... I actually felt worse when I read the overall prognosis for BAC is not great.  Time to remind myself, however, that I am not a medical doctor and without a biopsy, nothing is "for sure" at this point.  The only thing anyone has said to me that sounded definite was the UWMC surgeon I met. He said that given my relatively good health, age, etc. that if nothing else kills me this tumor (cancer) will definitely kill me and impact my longevity.  He said he did not need a biopsy to confirm this is cancer. He basically said that after you've done enough of these surgeries / seen these images/tumors you get a feel or instinct for what is and isn't going to turn out to be a positive malignancy.  That was his "sales pitch" to me for going forward with surgery. 

Tom, you had asked me how they came to a dx of adenocarcinoma without a biopsy... This is the course of events and all that I can offer for their diagnosis without a biopsy.  They are basing this on the change in the tumor from GGO to becoming more dense. Apart from that, I don't know why or how. I, foolishly or not, have simply relied upon /trusted their experience and expertise in knowing or recognizing the different types of cancers they see. Thank you, Tom, for the link regarding qualifications you look for in a good thoracic surgeon... I really appreciated the qualifications you highlighted.  You had mentioned depression... Yes, I am having an extremely difficult time with depression. I do have a counselor, but due to her high case load I only get to see her about 1x per month.  It's actually been longer due to my needing to cancel appts with counseling in order to accommodate the other medical appointments. I know I could benefit from more frequent sessions. There are no cancer support groups (yes, pretty unbelievable!) right now I've been told due to lack of a person to lead groups... but this is supposed to change in a month or two.  So... I turn to this site for inspiration and support right now! Thanks to you, and the others, who help us along.  You had mentioned a primary care provider... That has been difficult as well.  The first PCP I had (she suggested I get my first Lung CT) left the area before my second CT. I then had to wait almost 3 months before I could see/establish myself with another PCP, only to learn that he was leaving in a few months as well.  I was told they'd have another Dr. I could see (the clinic would not let me see the PCP's choice to refer me to one of his colleagues), but he hadn't moved here yet and it would be another 2-3 months! This was all taking place in the last six months.  Out of frustration I changed clinics, but was assigned to a ARNP not an MD or Internist as I preferred.  I have only seen her 2x. She is very warm and has been willing to help, but there hasn't been much follow-up. I feel like I'm directing myself here and that's probably why this journey feels so exhausting, lonely and confusing.  I will reach out to her again soon. She appears to be intelligent and knowledgeable, but I learned her background is in working with HIV/AIDS. I don't know how much experience she has with lung cancer, and she is new to our area and does not know a lot about services or Dr's in Western WA. 

Another long entry... sigh!  But thank you, again, for your responses.  Today is my 60th birthday.  I was looking forward to celebrating it with my son but I have my first PET Scan scheduled for tomorrow a.m. and I was told to adhere a high protein/low carb/no sugar diet... So no cake for me today! We hope to celebrate tomorrow after my scan.  My local pulmonologist's office has ordered the PET Scan and they will discuss the results at their chest conference on Monday, so I should have results / suggestions from them Monday afternoon.  Thanks for your support here - all of you messages were a helpful, uplifting, encouraging treat & perfect Bday present for me to read this a.m.  Bridget - I hope to be here on this site at age 73 helping someone like you've helped me!