| Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | 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
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Feb 2014 Posts: 24 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Feb 2014 Posts: 24 | 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
Caregiver to Husband Hubby Age 43 Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014 T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site. 37 nodes removed. 3 at level 1 malignant.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Feb 2014 Posts: 24 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Feb 2014 Posts: 24 | 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.
Caregiver to Husband Hubby Age 43 Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014 T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site. 37 nodes removed. 3 at level 1 malignant.
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | 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.
Last edited by Bart; 04-11-2014 02:16 PM. Reason: clarity
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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.phpGood luck with everything.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Feb 2014 Posts: 24 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Feb 2014 Posts: 24 | 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.
Caregiver to Husband Hubby Age 43 Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014 T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site. 37 nodes removed. 3 at level 1 malignant.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
Last edited by Cheryld; 04-15-2014 07:09 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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