The "Outlier" persists....

Armywife said:

Oldbeauty

You continue to have my favorite name on the board, and I'm so thankful for your presence here and the detail with which you write.  What an encouragement it is to read your journey.  Will be following these new adventures with great interest and many prayers for you..

Thank you

Thanks, Armywife.  I am cogitating on my next update.  I saw the surgeon yesterday, and he agrees with me that it is appropriate to do the wedge resection, and he is not overly concerned about my safety in the hospital during Covid.  But he gave me some additional information based on his reading of my films, and that has me revisiting my decision making process to determine what it is I want to happen right now. More later.  Best wishes, Oldbeauty

Opted for Surgery

Hello all.  I had my surgical consult last Friday.  The surgeon looked at my films and took my history.  His opinion was that because needle biopsy is less than 100% reliable, and because this growth is likely malignant given my history, he said he agreed with me that it made sense to move right ahead with a wedge resection that would be both diagnostic and treatment oriented (assuming it's malignant).  He kind of threw a curve ball at me saying he appreciated two growths, with the second at the apex of my right lung (first one is in my lower left lobe at 1 cm).  He felt that, most likely, whatever pathology shows for the larger one is likely what the other is also.  He said he would do the wedge resection now for the left lower lobe and later, depending on pathology, he would either go back for the other one or I could elect to zap it with the Cyber Knife surgery. He offered me a date of 12/14.

I learned looking at illustrations for this surgery that the lung is deflated first as part of the procedure, which kind of freaked me out.  I had thought that a collapsed lung would be a complication; now I learn it's a feature not a bug!  Jan9wils relates how her lung collapsed during the needle biopsy, and she ended up in the hospital anyway before then going back in for the wedge resection.  Then, her story proceeds with having to do chemo after her eventual wedge resection, which surprised me.  I guess I was being naive.  I was hoping that the surgery would do me fine, at least for awhile.  I don't know what my gyn onc would prescribe for me after surgery; I may inquire but I'm sure all this has to wait for the pathology to come through.  I would be in the hospital just one night, assuming all goes well. 

As I reflected further on this over the weekend, I started to have second thoughts because of COVID, but today I feel confident that I value certainty about what I am dealing with more than I fear COVID.  Even if I am facing chemo after this, surgery to remove that 1 cm lesion, to me, has always been a given.  And, if I want to further rationalize, it seems to me to make more sense to get in there before any dramatic post-holiday wave of COVID infections start to build; get ahead of the curve so to speak.  

I got my flu shot already, and I went today for my pneumonia "booster," and I will strictly quarantine by 12/1 at the latest.  No plans for TG get togethers.  I've reached out to 2 neighbors who work for my medical center, one a surgeon and the other a respiration therapist, for feedback whether I am foolish for pursuing this in time of COVID.  We also have a friend in Texas who underwent this surgery last year for early stage lung cancer.  I will ask her about her experience; I know she was up and about in no time and she had no follow up chemo or anything.

I called FoundationOne today to find out the process for getting genomic testing done on the tissue.  It seems pretty straightforward.  Medicare will pay for "eligible patients," which she said depended on the Stage of the cancer, patient status and diagnosis.  I would think I'd qualify on all fronts, assuming the initial pathology shows a malignancy.  Without insurance, they discount their price to $3,500, and they have a program for income-eligible patients to control the out of pocket cost.

I can't think of anything else to do.  I put a call in to my gyn onc to talk about whether I should have a PET scan first and to discuss the tissue analysis I want, which I think my oncologist is in charge of, not the surgeon. 

So I feel I have the bases covered.   I do have a nagging thought that maybe I am being foolishly aggressive but then I consider that there is no guarantee that these nodes will stay small and slow growing and maybe in 6 months we'll find that the cancer has found a way to escape and spread.  This would be a no-brainer if not for COVID.  I don't know that there is a way to quantify the risk I am taking by doing this with COVID in the air.  I am confident that the hospital has adequate PPE, etc. and they take strict safety precautions for all staff and patients.  So I think what I feel are just normal pre-surgery jitters.

Thanks for listening to my ramblings.  Happy Thanksgiving and best wishes to all, Oldbeauty

ConnieSW said:

My 2 cents

For what it's worth, I think your decision is a good one.  I am very cautious and weigh the risk factors for everything I do in regards to COVID.  I drive my poor husband crazy. Also, I am a retired RN who has always had a strong interest in infection control.

Thank you, ConnieSW

I appreciate your view and experience.  Best wishes, Oldbeauty

Thanks, Denise

Thanks for the vote of confidence, BluebirdOne.  Best wishes, Oldbeauty

MAbound said:

Well, the nodes just had to

Well, the nodes just had to be on two lungs instead of the same one, didn't they? It's bad enough to be deciding about what to do about one procedure only to be told that you are going to need two! 

Thanks for sharing what's going on with you and how you've been reasoning out how to proceed. It all adds to the knowledge base that one never knows if they're going to need to refer back to someday. Do you know what the smallest a specimen can be in order for genomic testing to be done?

Do not know that.

MABound.  Great question!  I will call back FoundationOne today and ask.  A big reason I'm doing this is to capture tissue for full analysis.  So, thanks for this.  Best wishes, Oldbeauty.

 

ETA:  Just spoke to FoundationOne about tissue sample requirements.  There ARE guidelines, and I do not know whether my 1 cm tumor is up to snuff.  My oncologist is calling me today.  I will have the printed tissue sample guidelines by then.  Oh boy, this complicates things.  Thanks for raising the question.  Best wishes, Oldbeauty

Fridays Child said:

Good luck!

It sounds like it makes sense to go ahead and see what you're dealing with.  Best wishes to you and prayers for good news and fast recovery!

Thank you, Friday's Child

I am doing my best to prepare and be optimistic.  Best wishes, Oldbeauty

Kaleena said:

OldBeauty, you know how I

OldBeauty, you know how I feel about being your own advocate!   Thank you for sharing your story.  I too believe you have made the right decision given what my husband went through.  Also  hope you can get a PET scan.  I just recently asked for one and my gyn/onc said fine but the insurance denied it.   So I had to just go with a CT scan and a Bone Scan. The CT scan showed nodules on my thyroid and some other incidental "findings" which my onc/surgeon didn't think it was anything to worry about.  However, it was the first time ever noted.  I will push for a PET scan again though in April/May when I get scanned again and I will have better insurance.  (My work dropped our insurance to basic in September through end of year)

Wishing you a Happy Thanksgiving!

Kathy

Hi, Kathy

Happy Thanksgiving to you and your children and their families, as well.  I am waiting to speak to my gyn onc today.  She answered my email in which I raised the PET issue.  She doesn't think it will add meaningfully to going ahead with the procedure.  My only issue now is whether she believes the 1 cm lesion is large enough to be fully diagnostic, both conventional and genomic testing.  If it's not, I will reconsider.  But I am confident in my decision otherwise, though the prospect of surgery is unsettling, as are the daily reminders that COVID is not under control.  Interesting times, indeed.  Best wishes tou you, brave woman. Oldbeauty