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LC and MORE


tomk

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First on my list is to thank those who responded to my query about an exercise plan--Bud, KW Judy, MI Judy, Alan, and ts. Tee hasn't progressed very far on any kind of structured plan but continues increasing daily activities. Tuesday brings a checkup with her surgeon???

Second is to let everyone know what great admiration I have for everyone who posts here! Most of my time online is spent reading posts from the past which has enabled me to feel that I know many of you personally and that's after less than a month after I found the forum.

Third, if you will note in the signature, even though Tee's surgeon indicates all is well with the LC, there is still an issue with a parotid gland tumor. It has not been a high priority with her general practitioner, oncologist, or surgeon but after Tuesday's visit it apparently will be elevated to #1 position. My research thus far indicates that even if it is benign, that a parotidectomy is in the future and that it is not something to be taken lightly. Tee's position is that she's going to stop seeing doctors because every time she sees one they find something new. QUESTION. Does anyone have any experience with something of this nature? If so, I would certainly appreciate any thoughts you might share with us.

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First of all, thanks for the update on Tee. I as well as everyone else was wondering what was happening. Good news on the LC. I don't have a bit of info on salivary gland tumors other than posts I've read from others. I'm sure you've done all the homework already. I can understand her position on all the Drs. and being sick of it all. However, it reads like the next surgery is around the corner. I am not one to ever throw in the towel. I am a believer in a tough fight. It's just what one has to do. I've met people with one met after another and am always impressed with their ability to keep fighting. It is tough, that's why it's called a fight. It sounds trite I know not being in those shoes, but my position has always been that if a fight is possible, I'll be in it. I hope she gets that someday soon. Personally, I feel like the team of Drs. and all their staff really put all their efforts and hard work into helping me beat LC and I would never let them down by giving up. I don't know what else to say. Alan

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Hi Tom,

Tee's response is one I've considered many times myself. Is she kind of joking? Got to keep a sense of humor with all this stuff. Good to hear that she is increasing her daily activities. Best of luck for Tuesday.

The good doctors of CancerGRACE are also knowledgeable about head and neck tumors, so you might address any questions you have to them. You can do it direct from LUNGevity through the Ask an Expert link. (Main page.) I take it no biopsy has been done on that yet? A quick read makes it sound like whether benign or not, removal is typically recommended. I'd say this is one where I would want to make sure that the surgeon has a lot of experience with it - not a general surgeon. Perhaps a plastic surgeon who specializes in head and neck work? Is there such a thing as an oncology plastic surgeon?

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Just to clarify, Tee was joking about not going to see the doctors. She's a fighter, has a great attitude and is always positive. She already has an appointment with her general practitioner on Aug 2 for a referral to ENT.

I don't know whether there's such a thing as an oncology plastic surgeon. I'm relatively sure though that at one of the Mayo Clinics campuses, the plastic surgeons are the ones who perform parotidectomies. Also the general consensus is that the doc should perform these on a regular basis, not one who does 1 or 2 a year. No biopsy has been done--both PET scans, however, lit up in that area. The surgeon was not overly concerned given the length of time that this lump has been present.

Tom

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Hi Tom,

What I know of partoid gland tumors is that the majority of them are benign. However, recommendations usually say to remove all of it to ensure it does not grow back and become malignant.

Mayo clinic wrote this: Mayo Clinic specialists pioneered the use of surgical techniques that reduce the effects of parotid gland surgery on a patient's appearance. At Mayo Clinic, parotid surgery is often performed through incisions that hide scars in the skin creases around and behind the ear. Mayo's surgeons are committed to minimizing the size of the surgical incision, preserving the facial nerve and reconstructing the surgery site.

Head and neck surgeons typically perform salivary gland surgery. Surgery may also be performed by oral surgeons or, at Mayo's campus in Minnesota, by plastic surgeons. A pathologist closely works with the surgeon, examining tissue during the operation to make sure all cancer is removed.

Because this can be disfiguring, I'd make sure a consult with the best of the best is happening.

I agree with Tee. It seems like every time I see a doctor, they find something more. However, it's because we are living with cancer. The doctor's understandably look extra carefully at every single test we have, every bump or weird symptom. And they find things because of that.

With my last CT scan, they said I have coronary artery disease, which means my cholesterol is a bit high. I had a heart doctor look at the CT, and he said just go and live and forget about it. That's what I'm going to do!

Judy in MI

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You and I posted at the same time! Great to hear she has a good attitude.

I've had experience with Mayo clinic, and they are fantastic. My insurance did not cover my trip there. However, because I was diagnosed with cancer, the airline charged me 50% on my tickets, and the hotel gave me a 50% discount. In addition, I consulted with a lot of doctors, and the only bill I got was for $250. Amazing organization!

Judy in MI

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Hi Tom!

I know a little bit about Parotid Gland Tumors because of my own experience with a Carotid Paraganglioma (Carotid Body Tumor)--you end up reading a lot about other head and neck tumors--and also because my next door neighbor is currently dealing with one.

It sounds like you guys are proceeding exactly as you need to. The biggest issue is that you need to find someone who is very experienced with these surgeries and highly skilled because of the proximity to the important nerves--is it the Vagus nerve that is the issue for Parotids? It's also my understanding that they often don't biopsy these things because of their location near nerves and blood vessels (is that right??)

You mentioned Mayo--are you all thinking of going there? I have heard only wonderful things about them and I've also learned that often care is less expensive there than at other institutions. I know traveling for surgery like this can be extra nerve-wracking.

I said the very same thing she did--I'm going to stop going to doctors because they keep finding stuff! I SOOO KNOW Her frustration there (and also so get that she's kidding).

I'm praying for you both and hope that all goes well. Please keep us posted! I'd be happy to ask my friend any questions you might have. I know how frustrating it is to have something so rare. It feels completely isolating and makes it all that much more scary.

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