Best wishes to you and your husband on Monday. You will be in my thoughts. Keep coming back for support. We are here for you every step of the way.

((hugs))
~Kerri

Has anyone out there had the corner of their mouth removed due to cancer. My hubby just had surgery on Monday. He is doing great but his mouth can't open too much. He has a free flap in his cheek which is swollen still. Just wondering if any of you have any advise. Thanks

There will be very few who will have gone thru this procedure. The mandibulectomy surgery I had, the one side of my lips were slightly affected. This is something a plastic surgeon can fix. Your husband may need to wait a full year for the procedure to "take". There are tiny blood vessels that are sewn together and the swelling takes a full year to completely go down. Bring this up to the doc. Sometimes they will go back in and do whats called a debridement. Thats where they will scale down the free flap. So if they do go back in again, they can open up his lips a little more. Yes, this can be fixed!

Hi there... Just read back sorry I didn't respond sooner. The light surgery is actually one my dr. out of PMH invented. Very cool it's being used elsewhere. That said, your hubby's swelling will subside. And at this point forcing himself to open his mouth is not a good thing. Once he's healed and stitches dissolved he can begin t gently stretch it... Skin eventually stretches over time, (kinda like gaining weight...) so he should allow healing and follow through on his treatment then slowly once his wound site is healed he can start to do exercises (physio) to help stretch the area. It will take time. I do the same with my neck. And it has really loosened up. Hugs and best wishes.

So we are now 3 weeks out post Op. My husband is recovering awesome. His donor site is mostly healed. Still looks bad but you can see the skin now and the DR's have said he can leave it open. HIs flap is healing great ... the hair is growing ... which is a good sign. He has started eating solid foods. He is slow and messy eating but he can chew in the right the side. The surgery was on the left. He still has pain in his jaw when he chews. But the DR's say when he does Physio it will all get better. His neck from the neck disection is tender to touch and he feels a lot of weight in his face.

We met with DR's yesterday and they told us more about the surgery. They removed 37 nodes out of which 3 were malignant in level 1 just under the chin. the jaw bone is not effected and all other 34 nodes were clear. They removed 1 Salivary gland too. The margins are clear but only by 2 mm. So our DR doesnt like those margins.

The Cancer Care Center in Calgary ... Tom Baker will be reviewing his case on Wednesday to see if Radiation is needed or not. Any Advise you guys can give while we wait would be helpful. I am wondering if there are alternatives to Radiation. My thoughts is that if they have removed all nodes on that side and mostly clear then he should be okay but I might be naive.

Hi Can'tbelieve,

Sorry to be late, but happy to read that your husband is recovering so well!

My attitude towards any treatment my Oncologist recommends as his choice for being the right one, because he knows me pretty well and what my tolerances are.

When thinking about alternative treatments (to whatever was recommended,) the only question I would ask is: Will this alternative be more or less effective than the recommended treatment?

I would much prefer a treatment that sacrificed my aversion to pain and discomfort, over a treatment that reduced the chances of a fully successful elimination of the cancer.

Pain and suffering are generally transient, and when you have passed through them, as you certainly will, they are gone.

It's not always a black and white choice, but I would never choose comfort over survival if the choices did not offer equal chances for elimination of the cancer.

My advice is if they recommend radiation (I personally think they will and should - 3 positive nodes, and small margins - I would personally be surprised if they didn't) ask can we start now... ???

I'm not being facetious.
This cancer is tricky. It can be aggressive and doesn't always behave in a typical fashion. People often make the mistake of thinking -- only two or three nodes out of 37... That's good... And yes it definitely beats all 37.. However the nodes are the fastest way for cancer to spread. And this cancer can move on a microscopic level - his 34 nodes may have been clear but that doesn't mean his other nodes don't have a cell or two - hitting it with rads is the best way to go. I had one involved and was grateful they recommended me for rads...

Its not fun by any means, but you want to do what you can now to get away from this. You don't want to walk away thinking he's clear only to have a bigger problem on your hands later. (this happened to my friends husband a while back, and by the time they realized the cancer was back it was too late.) rads is effective... And as far as I know there is no alternative to it and chemo at the present time.

Hugs

For a cure for HNSCC, there is no alternative to radiation, except surgery, chemoradiation. Chemo and Targeted therapies alone is palliatve. There are different types of radiation though.

http://www.oralcancerfoundation.org/treatment/radiation.php

Good luck with everything.

We wont find out for 2 weeks if they will be doing Radiation. My inclination is yes they will too. And I think it is the best.

Just wondering when Scar Tissue in his face willl loosen up. Like I said he is eating solids but he is slow and gets frustrated quickly because of being slow. I know he is doing great but he doesnt feel that way and keeps thinking what if ... what if the scar tissue in his face doesnt go down ... will he have to eat this way forever ...

I know that is not the case ... but just wondering if there is something he can do in the interm to help the healing along.

One of the hardest lessons to learn is patience... I know we all want to get well and feel better/normal - this is a plus particularly when dealing with cancer - it gives you some leverage against the fear (the ability to say... that wasn't too bad.. I can do this) - however, our bodies need time to heal. Scar tissue will only loosen with stretching. So soon after surgery I would wait on that. Sadly it will tighten up during rads again. My neck is not stiff but my muscles are tight, and I've had acupuncture, and stretch daily. (muscles do have a memory - when they are healthy - but radiated tissue is a bit forgetful, so this is something he will have to get used to and work on for years)

Not to say that it won't get better. My neck is remarkably better after 3 years, and much acupuncture it's soft and I have full range of motion but on a muscular level it still feels somewhat tight.

Best thing to do (after 6 weeks when he is healed and during rads if possible is start stretching)

So tell him patience...hugs.