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#148686 - 04/23/12 08:39 PM New to all of this  
Joined: Apr 2012
Posts: 2
Russo Offline
Russo  Offline

Joined: Apr 2012
Posts: 2
Hi, my boyfriend has just been diagnosed with SCC of the tongue. He is having a partial glossectemy tomorrow. He first noticed a red/white patch on his tongue in March. After the first biopsy came back negative he was sent to an ENT surgeon and he was almost positive by just looking at it that it was cancer. He is in a lot of pain but I've been told that this is common with this type of cancer. His CT and chest xray came back ok but won't really know until they go in. Any suggestions/comments on the recovery period what to expect? T

#148695 - 04/23/12 09:43 PM Re: New to all of this [Re: Russo]  
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
KP5  Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Hi Kim,
First of all let me say we are sorry you have to be here, but it is the perfect place to be with what you're going through. There is a tremendous amount of support here, don't hesitate to ask questions, vent, cry or scream....we'll be here to listen. We have all been there.
Where on your boyfriend's tongue is te cancer? I guess the ENT did another biopsy to confirm his belief? Has he or is he going to have a PET scan. I have other questions, but so will everyone else so I'll end with those.
Stay in touch. The journey is long and tough but we have all made it through and you guys will too. How old is your boyfriend? Have they checked to see if he is HPV+?

Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
#148699 - 04/23/12 10:46 PM Re: New to all of this [Re: KP5]  
Joined: Jun 2007
Posts: 9,934
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,934
Hi Kim, welcome to OCF! I have the same concern as Kathy, was another biopsy done to confirm your boyfriends sore was SCC? There are many different things a sore could be besides cancer. Is he being treated at a cancer center? What other tests were done? Its not possible to be able to tell how his recovery will be since we do not know all his info. Not all cancerous tumors hurt. My tumors (all 4 of them) did not hurt at all but I could feel something was there that wasnt right. His pain could be caused by the biopsy. It can take a few weeks to bounce back depending on how much tissue was taken.

Good luck to your boyfriend with tomorrow surgery!

SCC 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 smile
#148706 - 04/24/12 12:41 PM Re: New to all of this [Re: ChristineB]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hi there... wink Welcome - and sorry you have to be here... I do hope he's being treated at a ccc - if not once the surgery is over it might be a good idea to get a second opinion there - often drs will just remove he tumor if it seems to be an early stage with no other involvement (ie lymph nodes etc) and then they just send him home thinking he's cured only to have a node pop up later. Often this particular kind of cancer (cancer of the oral tongue) is treated with a neck dissection, and removal of the tumor, and a possible rebuild of the tongue if the amount being removed is large enough. So if he's only having the tumor removed then tell him to keep a very close eye on his neck - And get to know what is normal for him.

Recovery time for the hemi - is likely 6 weeks though I was eating and speaking okay after 2 - he may have a trache and nasal tube post op - they kept me in for 10 days - but I had a graft and neck dissection.

If he is having a neck dissection he will be numb and stiff with a possible weakness in his shoulder on the affected side (physio will fix this) his tingue will be swollen and healing though, i can't say I was in much pain but I have a pretty high pain tolerance.

Follow up treatment depending on the pathology results can be radiation and chemo... (not fun but doable)

The one thing I would like to say is diligence. Sometimes this disease can be very aggressive. Depending on what they've done for him surgically it's possible to get a quick recurrence, generally in the nodes, because a scan does not pick up microscopic cancer, only formed tumors or larger cell clusters. This is why for this type of cancer they usually remove a certain number of nodes. They can tell the aggressiveness of the cancer by the pathology. I would ask.

Hugs and good luck!

Last edited by Cheryld; 04/24/12 12:48 PM.

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
#149122 - 05/05/12 07:55 AM Re: New to all of this [Re: Cheryld]  
Joined: May 2012
Posts: 25
PepperPotts Offline
Contributing Member (25+ posts)
PepperPotts  Offline
Contributing Member (25+ posts)

Joined: May 2012
Posts: 25
South Carolina
Hi Kim (Russo) -

I, too was diagnosed with SCC on my tongue after I noticed a small red spot on the right underside of my tongue. Mine DID hurt - not excruciating but I always knew it was there. When I ate anything spicy or acidic, though, it hurt quite a bit. I was diagnosed at the beginning of March and it came as a huge shock to me and my husband because I am otherwise totally healthy. Had I not mentioned the irritation (which I thought was just a little canker sore on my tongue) to my dentist, who knows how bad it could have gotten.

My lesion never did get that big - my surgery was on April 11th, so not quite a month ago. I was fortunate in that when they got in there, my lesion had not spread outward and ended up being a T1, N0. The surgeon did take out 29 lymph nodes to be safe, and the pathology on those came back clean.

I guess my point is that you cannot think the worst. Just hope for the best. Post-op will depend greatly on what they find during surgery. If it's very contained and not spread, he could be fortunate and not spend too long in the hospital. I was in ICU for 4 days. When I woke up from surgery (my first ever in my life), I had a feeding tube in, a catheter (ew), a "drain" in my neck and what felt like a ginormous piece of something in my mouth (they called it a "bolster" which is basically a big rolled up piece of gauze soaked with medicine).

Initially I couldn't speak - but mainly because of that bolster, which was partly sticking in my throat and my throat was irritated because of the feeding tube (but I was grateful for that when it came time for pain meds).

The bolster was removed on the 2nd day after my surgery and as a result, I was able to swallow clear liquids, which helped speed things up. My drain was removed the day before I was discharged (so on day 3) and that was painful as hell - they basically yanked it out of my neck. Good thing the doctor didn't warn me ahead of time of how painful that is because it would have made things worse. Because I was able to swallow 75% of my "food" tray (basically broth of some sort, juice and iced tea), I was discharged on day 4 but I had to stay on a liquid diet until my follow up appointment two weeks later. That part was rough for me because I love food so I could smell everything but all I was allowed to injest was liquids. Don't get me wrong, I became very proficient at making smoothies that were not too thick so that I could suck them through a straw - and they were tasty - I mixed low-fat plain or vanilla yogurt with peanut butter and sometimes fruit - like bananas. As soon as I got the go-ahead to eat solids again, I went at it full bore so any weight I lost between the surgery and my post-op follow up, I have since put right back on.

I have serious shoulder issues from the neck dissection (the removal of the lymph nodes), including some pretty acute shoulder pain at times and weakness. I'm right handed so doing things like brushing my hair can be a challenge but I push myself because I've been told that if I don't, I could get shoulder freeze.

I'm on short-term disability from work until my doctors tell me I can go back. My next follow up isn't until 5/16. No one can tell me what caused my cancer - it's very random. When I go back on the 16th, I am going to ask if they tested me for HPV - just to rule that out.

My biggest concerns going in were 1) will i be able to speak normally? and 2) am i going to look like some sort of freak?

Some people might think these are shallow concerns but at work I basically teach people to use my company's multiple systems and processes - sometimes one on one, sometimes I teach large classes of my colleagues. My ability to effectively communicate is vital to my job so of course I was concerned.

Fortunately my speech has improved fairly rapidly - but I'm sure it's because it was a relatively small piece of tongue that was removed. Some S, SH and CH sounds can be challenging at times, but I'm working on those by just practicing.

Hopefully, your boyfriend's cancer will be small and contained and his recovery will be quick.

I know that I got lucky after talking to folks whose SCC was far more advanced than mine but I still wouldn't wish my experience on ANYONE. Cancer sucks no matter when you get it - the worst part is the emotional rollercoaster - at least for me it is.

I will say that a positive attitude is integral to healing after surgery.

Good luck to you both.

Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.

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