| Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Babak, I am also self employed, so I know the stress. I worked super hard after my diagnosis and before surgery to build up a reserve to get me through the off work time. That's something you may want to consider (plus work will help keep your mind off your health issues).
How long you'll be off work will depend on your treatment plan. I was lucky in that had no radiation, and was back to work 3 weeks after surgery, albeit at a reduced level.
Keep us posted.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | 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 | Radiation SUCKS! But it's doable. In the nutshell... you may only feel tightness and discomfort in the beginning. Nothing major it depends on whether you've had surgery. I could feel the scar tissue tightening from the outset other than that I didn't really have any issues until week 4. Things got bad. That's about the time you get a funky metallic taste, and then shortly after that foods just taste awful, then blessedly you lose all taste. It becomes hard to eat and swallow. At this point you will need to have either a PEG tube to get feeds, or some serious stamina. (I went the stamina route and FORCED myself to drink boost and eat). Thankfully I had minimal pain until the last few days of treatment (this is rarely the case) your mouth will blister, and burn, if you are fair skinned you may also blister and burn on the outside. You should rinse with salt/baking soda/water - or FLATTENED Club soda - which you can actually swallow (the baking soda mixture you have to spit out)keep your mouth as clean as possible. You may need pain meds and you should have a good cream for your neck area. The worst time during radiation is when it ends. The first two weeks following are extremely unpleasant. You will feel tired, and sore and all around crappy. Then slowly you will start to climb out of that hole.
If you are also getting chemo you may be nauseated. You also have to look for different symptoms - tingling in the hands and feet, and hearing loss if you are on cisplatin.
Compared to chemo and surgery... RADS sucks... but it could save your life. SO stay strong. and 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 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Babak You will know better on Monday about what to expect, but I just want to mention that as being self-employed, you have the advantage of having some control over your hours when you are able to work. You may be able to work at least part time through most of your treatment, or you may have to look into going on SS disability for a bit. I am sure that you are a very independent person, but sometimes family and friends can be a great help. If you would want to help a buddy in your situation (maybe driving to/from surgery or chemo) there is no reason that they would not want to lend a hand for you. Let us know your results on Monday and we can be more specific about what to expect.
One last thing - the holidays are coming. Do your best not to let them delay your treatment. I am sure that my husband's treatment was delayed by at least a month because of them; doesn't seem to have been a problem in his case, but speed is of the essence. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Nov 2013 Posts: 7 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Nov 2013 Posts: 7 | Hi everyone, i just had my operation, a good piece of my tongue is gone but nothing major as the tumor was not too big, i will not get any chimo nor radiation! I am just praying my doctors know as much as they are believed to know. I mean if they are right i am one of lucky cancer patient! And if not then i will really lose my trust in them. Also they have cut the left side of my kneck which i won't get into the terminology. Here is the question i ask myself now and appreciate your input: Is it possible that this was just a nightmare, i am out of it now and soon i will forget about it? Or this is just the beginning and i will be stupid to even think that this may ever be over? Thanks everyone
42 years old, Professional Hvac technician, long time smoker, but have quit now, occasionally having couple of puffs. 09/13 diagnosed oral cancer (tongue) Waiting for the cscan and treatment options | | | | Joined: Nov 2013 Posts: 7 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Nov 2013 Posts: 7 | Hi Tina, thanks for your input, i noticed you didnt have to go through chimo and radiation which is my case too, is it still the same? Are u ok after the surgery so far? I would like to keep each other posted on our conditions Thanks Babak
42 years old, Professional Hvac technician, long time smoker, but have quit now, occasionally having couple of puffs. 09/13 diagnosed oral cancer (tongue) Waiting for the cscan and treatment options | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hello Babak - I think it's been awhile since I posted on your thread, but you just asked a question that I think I can shed some light on.
Looking on this as a bad dream and whether or not it will ever be over is (in my humble opinion) doing what my good forum friend and mentor Bart told us we absolutely should NOT do. Doing so is what's called "attaching to outcomes" and it means you have an emotional stake in the answer. When we do that we put ourselves in the position of becoming bummed out and even depressed if the outcome isn't what we hoped for.
It's far better to just approach this as "I have no control over the outcome. If the outcome is positive ... great, if the outcome is negative, okay I'll face that bridge only if I actually come to it". Thinking this way keeps us from worrying both consciously and sub-consciously about what the future holds, both positive and negative. It allows us to go to sleep each night without burdin and to wake up the next morning with a fresh, positive outlook for the day.
I had several opportunities to worry thoughout my treatment. My worry time was usually just as I get into bed and turn out the light. Fortunately, for me, when I go to bed, I'm usually really tired and ready to go to sleep. So, it was easy to just say screw it, I will worry about this tomorrow (if at all). then when the new day comes, I wake up refreshed and say, no, not gonna worry about this today. I guess in one sense you're just kicking the worry can down the road, a little farther every day. That way you never have to actually worry about any of this.
Try this, it really will make your journey down this road a lot more pleasant, and with this battle we can use all the pleasant we can get.
best of luck
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Nov 2013 Posts: 7 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Nov 2013 Posts: 7 | Hi Tina, it is me again, just interesting how similar our cases are. I had some part of my tongue removed(left side) and my knodes on the left were also removed, i did work super overtime before my surgery and this is giving me some financial relief now. I an hoping to go back to work even before one month. How are things with u now? I too do not need to go through chimo and rads for now, is it possible we are cured?
42 years old, Professional Hvac technician, long time smoker, but have quit now, occasionally having couple of puffs. 09/13 diagnosed oral cancer (tongue) Waiting for the cscan and treatment options | | | | Joined: Nov 2013 Posts: 7 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Nov 2013 Posts: 7 | hi everybody had my surgery. results were very good, no radiation or chemotherapy was needed. its been 14 months to be exact since my surgery. so far I feel good other than occasional paranoia of it coming back. I feel very lucky so far. I pray I will never have to deal with it again. to all those people leaving messages for me I say thank you and I wish you the best results as well.
42 years old, Professional Hvac technician, long time smoker, but have quit now, occasionally having couple of puffs. 09/13 diagnosed oral cancer (tongue) Waiting for the cscan and treatment options | | | | Joined: Nov 2013 Posts: 7 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Nov 2013 Posts: 7 | Hi Tony, the last time you talked to me was about a year ago and I was very happy and thankful of your response. how are you doing yourself now. I am ok and I had my surgery and its been 14 months and counting since then without any issues. How did your treatment go?
42 years old, Professional Hvac technician, long time smoker, but have quit now, occasionally having couple of puffs. 09/13 diagnosed oral cancer (tongue) Waiting for the cscan and treatment options | | |
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