Surgery decision: How do you decide when offered 2 options?

Posted by jjansencg @jjansencg, Nov 6 10:35pm

Hello, we were all set for surgery on Monday. Husband has scc (recurring after MOHS 2 years ago) in his parotid and lymph nodes. It’s pretty large, 3.5 cm) Pet scan was clear other than neck.

Surgeon is good but pretty old school. Has been doing ent surgery for 35 years. He plans removal of superficial parotid and part of the inferior tail with beck disection. 3 hours. Overnight stay and home. Hopes he doesn’t have to cut the facial nerve but might.

Then today, we met with a doc for a second opinion and consultation at the recommendation of one of my docs. He could do surgery on the 25th.

Younger, trained in robotics. Also trained in micro vascular surgery. He plans a similar surgery but says due to size he’s liable to have a large dent and be asymmetrical. He wants to potentially include a graft from arm or leg, connecting veins and arteries for a better physical outcome. Surgery is much longer and hospital stay is several days.

He said immediate reconstruction is better because after radiation it’s almost impossible to go back to try to do it.

Hubs really likes the second guy. Feels first guy is really good but won’t go out of his way for aesthetic look.

Any of you had to make this decision? Will waiting two weeks make a huge difference? (Second doc said no. Might get a little bigger but better able to make it look good)

Any suggestions are appreciated. He is 70, good health, works out regularly.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Young and up with the latest technology vs old and highly experienced. That is indeed a dilemma only you can solve, other than option number three, which is to go to a well established cancer center or clinic. I am concerned about the size of this tumor in such a short period of time. I think (non-medical opinion) the rapid growth is a concern to be considered. Has he had a biopsy of the tumor?

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He has had a biopsy, ct scan and a pet scan. It is squamous cells with HPV cells, 3.5 cm. in the parotid and lymph nodes they suspect. Pet scan was clear other than that.

The hospital is Indiana University Hospital in Indiana, so part of a pretty big cancer center. I told him it had to be his decision. I didn't let anyone make my decision with breast cancer 15 years ago.

He talked to the kids and two physician friends this morning and after that decided to wait the two weeks and go with the new guy. He has been doing this for ten years, so its not like he is just out of school. He was actually one of the first docs in Indiana to use a robotic arm or something and is director of the robotic program for IU.

So...off we go. Now I can switch my worries to a long surgery and longer hospital stay lol, and probably a bigger change for issues if I were guessing due to connecting nerves and arteries.

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I had parotid surgery and neck dissection December 2010. I had 2 surgeons at Johns Hopkins. One did the parotid and the other took muscle tissue from my outer thigh and implanted it in my cheek. They put extra tissue in my face expecting the proton radiation to shrink the tissue a bit. For me, it did not and I had to have a "debulking" outpatient surgery about 2 months after radiation to reduce my chipmunk cheek. For my parotid surgery I was in the hospital for about 5 days. The surgery was 9 hours. The only paralysis I have is about 1/3 inch involving my upper and lower left-side of my lips and I have little feeling on part of the left side of my face, near my ear and follows the jawline. Good part is when I had the debulking, there was no pain because there was no feeling. After the surgery I had some weakness in my left arm, but recovered quickly with physical therapy. My second surgeon had plastic surgery training. Several years later he did a hemi-thyroidectomy with no neck scar. My parotid surgeon was a head and neck cancer surgeon. My regular ENT offered to do the surgery but it is a very intricate surgery to prevent as much nerve damage as possible. Johns Hopkins was the number 1 hospital for this surgery. Parotid cancer is only .5% of all cancers so you really want someone with expertise who has done a lot of these surgeries. Wish you tons of luck and a speedy recovery. It is the radiation that potentially will be horrendous. Make sure you are informed by your radiologist ALL OF THE SIDE EFFECTS. Mine kept me in the dark.

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That is exactly what he is having done. So glad to hear yours went well.

I am a major researcher on this type of stuff. The hubs is not nearly as much. I feel like it is my job to be as informed as possible so that I can ask intelligent questions and be an advocate for myself (or him in this case).

I have made him read all kinds of stuff on the side effects of the radiation, what to expect after surgery etc.

I was up until 3 lady night reading and sending him studies on the surgery so he would have a clear understanding of his decision

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Profile picture for jjansencg @jjansencg

That is exactly what he is having done. So glad to hear yours went well.

I am a major researcher on this type of stuff. The hubs is not nearly as much. I feel like it is my job to be as informed as possible so that I can ask intelligent questions and be an advocate for myself (or him in this case).

I have made him read all kinds of stuff on the side effects of the radiation, what to expect after surgery etc.

I was up until 3 lady night reading and sending him studies on the surgery so he would have a clear understanding of his decision

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@in absence. I would choose the,modern u to date surgeon. My Mayo surgeons were top notch! My experience from SSC HPV tongue and lymph node cancer is: do your research, find a surgeon you trust, don't second guess your surgeon, once you begin treatment stop googling.

Read all the info your docs give you. But don't go down the Google rabbit hole and second guess your doctors and your decision. Be strong and confident in yourself and your team. Its a battle but you will win!

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You and your husband will decide what you believe is in your best interests, as it should be. However, I disagree with @sandy8043. Never stop learning and exploring. You never know what may be a great importance. Burying your head in the sand may ease your anxiety but ignorance does not help in the end.
I only suggest you find a surgeon at a major medical center that specializes in this type of surgery so you have the best possible outcome.
Wishing you great success.

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Profile picture for pampou @pampou

You and your husband will decide what you believe is in your best interests, as it should be. However, I disagree with @sandy8043. Never stop learning and exploring. You never know what may be a great importance. Burying your head in the sand may ease your anxiety but ignorance does not help in the end.
I only suggest you find a surgeon at a major medical center that specializes in this type of surgery so you have the best possible outcome.
Wishing you great success.

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@pampou I agree on learning. Maybe I was not clear in my description. But I think once you set on a plan for surgery, radiation and chemo that it important that you have confidence to in yourself, your team, and your choices. Treatment will have enough challenges. And decisions will be made along the way. But at some point, preferably the beginning, you have to move ahead with treatment with confidence in your decisions, yourself, and your team. Anyway, that's what worked for me. I went forward without worry or fear. Everybody has their own strategy.

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jjansencg I feel like this is a better decision. I had aggressive SCC of my ear and had both ENT and ENT/plastic surgeons at Mayo Clinic Rochester as surgery involved removing the superficial parotid and it turned out a portion of the facial nerve involved in tumor. Total surgery was over 8 hours. Recovery was tough with sudden total facial paralysis of the right side. No implant because only part of parotid was removed, along with lymph nodes. I have minimal scar and some atrophy of cheek, eye, and mouth muscles mostly, but fair nerve control because the facial nerve was repaired. While it took months to see nerve control start to return, it continued to improve with healing for years, especially with facial exercise. Radiation was started 5 weeks after surgery as margins were not clean. Cetuximab was administered weekly during radiation. It was a tough road but survivable and now I am 13 years since the first surgery when my 5 year survival rate was only predicted to be 30%. Surgical techniques are always improving and it sounds like your husband has selected the better option.

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