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Follow up shenanigans: information / input requested! Two questions.


alascerca

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Hi there all,

Diagnosis: Lepidic Adenocarcinoma Stage I
Surgery -- three wedges taken from left lung October 19th 2021
Considered a "surgical cure."

Please bear with what must be a repetitive question! If somebody can lead me to where-to-go, I'd greatly appreciate it! (Tried the search box, without success.)

I FINALLY circumvented my surgeon (an uncaring *ss) and got scheduled for a CT 4 months surgery (Feb 15th). Being a counselor for children and adults who have cancer, I have seen rubrics for follow up of all sorts of cancers at different stages. Question #1: Can somebody please point me in the direction of follow up information for this lung cancer? I am floundering and can't seem to find anything that satisfies my anxious wanting to know.

I have received conflicting information from my surgeon, who refused to refer me to an oncologist. He is not supportive in the LEAST, and so, I am trying to self advocate in the most intelligent way that I can. I cannot find information regarding what is the typical follow up after surgery -- 3 months? 6 months (surgeon has said both)? PET? MR? CT? The scan I was finally able to finagle is a CT. I really dislike not knowing the standard protocols, and would love to be led to where I can see such information.

I am struggling enormously. This is my third major cancer and I became disabled from the second one, on 2006. The others, pelvic cancers, were stage III, and I had the attention that one might desire: seemingly caring, on top of things, ready to help. That is not the case now. understandably, I am Now terrified that I am not long for this world. Knowing cancer as well as I do, both from personal experience and professional work, I know that lung cancer, to put it vulgarly, is a traitorous bi**h. I want to feel seen, heard, attended to. It is evident that this time around, I am the only one who cares, so it is in my lap.

To pat myself on the shaking, skinny shoulder, I was able to circumvent the surgeon and get an oncology appointment. (I also have been told repeatedly that this is not standard protocol when surgery is considered "curative"). I know that I want to see an oncologist, but as it has been such a fight, and they have told me that this is not the way they work it, now I am not even sure what I want the oncologist for. I want to get the best benefit from the oncologist, so would like to know

(question #2):  How can an oncologist be of help to me even if I am considered thus far, "surgically cured?" What is it that I want from him? In the past, when I have seen my oncologist, they review my case, and ask me varying questions related to my health, and simply oversee things. It was a great feeling that when I saw my previous oncologist...and perhaps more than anything, it afforded me a sensation that I was "in the loop." She also felt it important to check in with me.   Since this time (Kaiser insurance now), it is considered "unnecessary," I am suddenly lost as to what I am looking for in an oncologist. What do the rest of you "use" your oncologist for? I  don't want to have been granted this appointment (which was a BEAR to obtain) and not take advantage of it...I believe that it may be a one-time thing. 

It is interesting...I know the motivations behind my upset and spacey sense of being utterly lost; I work with patients in the same circumstances all the time. Now, however, I can't seem to pull it all together. Counselor, counsel thyself! -- an apt yet nigh-impossible feat.

Your input is so appreciated, and I am so happy that I found this responsive, friendly collection of great people...doing such valuable and crucial work. Thank you all so much.

Cheers from twilight-lit forest skies.
~ Joana
 

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Joana,

Here is why almost all of us have a medical oncologist after a successful resection where the surgeon asserted (as did mine): "I got it all." I then had 4 recurrences after a "successful" surgery.

And, this information was authored by a medical oncologist on outcome terms after treatments. Note his comments about surgical pronouncements.

Stay the course,

Tom

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Hi there Tom,

Thank you for responding always so thoughtfully and helpfully. I will peruse this document you've linked. I also found (FINALLY! Don't know why I couldn't before) the NCCN framework for NSCLC:

https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1462

I'm "stayin' " as best I can; I become discouraged and must,  also deal assertively, with my own desperation and well...depression. There is an online support group that I will join today; perhaps it will be of help. Connecting usually is an upper in any situation.

Cheers, and again, thanks a lot.
~ joana

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You are doing an amazing job of taking care of yourself. Your surgeon, a seemingly uncaring __________ [fill in the blank with your favorite expletive], may just feel highly insulted that you are not celebrating his work in "curing" you. So many questions you have asked here are exactly what you need to ask an oncologist! 

I've found the NCCN treatment guidelines for standards of care helpful. Maybe they would help you? https://www.nccn.org/guidelines/category_1 

Hang in and keep moving ahead. You're doing a great job. 

Karen

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4 minutes ago, alascerca said:

 I also found FINNALLY! Don't know why I couldn't before) the NCCN framework for NSCLC:

https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1462
 

Cracks me that I sent you the link to the NCCN guidelines just as you were posting it. You just keep going!

K

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I haven't had surgery but at this point of my Stage 3b NSCLC my oncologist is there to prescribe my targeted therapy and follow me with 3-month PET/CT scans. I've been NED since April 2021 but it comforts me to be watched so closely. I do think you should be followed by a medical oncologist with regular CT scans. (By the way, low-dose CT scans run about $100-$200 without insurance coverage.) I hope you can find one who has tons more compassion than your jerky surgeon. It makes all the difference to your state of mind. 

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Hi there Judy M2!

Thanks a lot for your encouragement! I shall be persistent and hope for some answers soon. Congratulations on a year NED! That is wonderful and it sounds as though you have a system/team in place by whom you feel truly well cared for. I hope some of that fortune rubs off on me! Cheers, may your weekend be lovely!  ❤️ joana

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