| Joined: Feb 2014 Posts: 17 Member | OP Member Joined: Feb 2014 Posts: 17 | I've looked at the Radiation portion of this web site, and it is not helping me. I need to speak to someone that has been through it, I'm so afraid. I have 6 children, 2 grown, and 4 at home. I have alot of responsibilities, I work full time. Do I need to take a leave from work? I'm very scared about them damaging all my saliva glands, and me losing all my teeth. And I thought he was only going to radiate me from my chin line down, but he is saying he wants to do it higher above my jaw and teeth, to be able to hit my tongue with the radiation as well. I don't understand. Feeling very alone and afraid.
SCC 12/13 - T1N0 1/28/13 - removal of tumor Rt. Tongue clear margins 5/14 lump under chin, 8/14 FNA showed C and CAT 8/25 neck dissection, 14nodes removed 9 clear 5 with C Extra Nodal Extension not present 9/9/14 tumor board meeting to determine RAD and poss chemo treatment
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | All I can say is many of us made it through radiation. It's brutal but the choice isn't good, either. You won't really know about work and such until you get started. We had a traveling salesman from Florida many years ago and he traveled in his car all week long. He never missed a day of work.
Good luck and best wishes. Address the anxiety as soon as you can. The mind can help you or hurt you if you aren't aware.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 | The unknown is always scary. Try your very best to not worry so much about things you have no control over. Focus on staying busy and doing positive things.
Radiation is not easy for most of us. What Ive noticed over the years is the patients who focus on their intake are the ones who get thru it easier and have a faster recovery. That said its up to YOU! Every single day you need to hit the minimums of 2500 calories and 48-64 oz of water. If you can push to take more in thats even better. Even 3500 calories is not too much for a patient going thru rads and recovery. Right now... EAT!!! Have all your favorites and even desserts, you do not want to go into this craving anything.
You probably will need some time off from your job. How much, nobody can say at this time. Most patients do ok managing their regular lives until about the 4 week point. Then there are others who have worked every single day thru the whole thing and other patients who have struggled from day 1. Just like everything else, cant predict who will sail right thru and who will struggle. Much will depend on how physical or even how much you need to concentrate on technical things for if you need to take off. I worked part time until I couldnt do it any longer then stayed home until I was 2 months post rads, back to work only part time for several months. Mine was a technical very detailed office job but took so much mental ability I was not thinking clearly enough to do. I also went back quicker than many do, most will be back to their regular schedules about 3 or 4 months post rads. After all this you can see why your questions are so hard to answer... everybody is different!
Do what is within your power. Assign every child things they can do to help you get thru this. They want to help and feel better about things when they are included in helping you. Make a list of every single person who has offered their assistance, get their contact info. Tell them when the time comes you will let them knwo what they can do to help. Even walking the dog, taking the kids out for a few hours to the movies, making dinner for the family, driving you to rads, or picking up meds from the pharmacy will help.
Radiation doctors must radiate a larger area to ensure all the individual stray cancer cells die. Dont worry about this! You have so many other things to focus on and this is another thing out of your control. At some point you will have to let your guard down and believe in your doctors and what they recommend. Take it day by day and dont worry about "what if" if you dont have to.
If it were me and I was going for surgery soon with so much anxiety, I would push back and go out to make some great memories with my family. Get outside and take a long family bike ride, go out to your favorite restaurant, even throw a party. Sounds nuts but its fun and will help everyone come together as a family.
Enjoy your weekend and please post when you can. Best wishes!!!!! 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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Angela I won't repeat the good advice above other than to endorse it. Of course its new and scary and it won't be easy. I couldn't have worked during mine but I know others have, especially in the early weeks. Its a journey,a learning curve. No one can tell you exactly how your body will react. The medics can only give you a range of likely side effects, which ones you get and how bad they get depends on your own body, your attitude and measures you take to minimise the symptoms (pain relief, nutrition etc).
You'll be sick to death by now of the cliche "stay positive", but it is so important. Keeping yourself calm, optimistic and relaxed about things beyond your control helps the healing process enormously. Optimism and pessimism are both extremely contagious. Keep your chin up and you'll do fine. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Angela , you have been given very good advice by other members above. I just want to say that this is an aggressive cancer. Hit it hard from the getgo. If you are offered chemo with your radiation, take it. Your life is worth it. Follow Christine's advice. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2013 Posts: 32 Likes: 1 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2013 Posts: 32 Likes: 1 | Angela, I had an extremely similar case as you can see in my signature info. I am 43, normally work full time and have two small kids. I took ~ 3.5 months off work. The only time I could have worked would have been the first two weeks of Rads, but many here worked throughout (I have no idea how!). But my job is also hectic, stressful and long hours. Oral cancer is aggressive and sneaky and predictably unpredictable and do not hesitate to do radiation/chemo. It was admittedly pretty awful for me, but I was prepared to do whatever I could do to LIVE. Doing the treatment felt like taking control of the situation for me. At least that is how I got through it. If it comes back despite the treatment, then I will have no regrets. Am happy to talk with you anytime about radiation in detail. I kept a log of every med I took and how I felt, and also had a Caring Bridge site. Things start to get foggy pretty early so I found it helpful to write down what I was taking, eating etc. The good news? Im almost 3 months out and am mostly doing fine now. I have the same issues that many here have discussed but all nuisances vs QOL issues (at least am choosing to see them that way!). There is light at end of the tunnel and it is 100% worth it to keep the nasty cancer away. Good luck and keep in touch
Laurie 42 yo Pediatrician No smoke, social drink, HPV neg May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0) Partial hemiglossectomy and sentinel node bx NEG NED 5/29/13 3/2014 - Cancer back (never gone) in one right sided cervical node Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg 30 Rads and 2 cisplatin done June 13! PET in 3-4 months but no clinical cancer and I'll take it!
| | | | Joined: Feb 2014 Posts: 17 Member | OP Member Joined: Feb 2014 Posts: 17 | Thankyou all very much for your advice. I'm searching in my mind how to stay positive. I'm going to need a focal point, I'm guessing that will be my children. They need me, and I need them. I noticed a few comments about high stress jobs. I'm very interested in this because my job is very stressful. I believe it attributed to the situation I'm in greatly. I'm software developer and project manager, as a consultant. Was thinking of quiting, but with everyone saying to stay busy, I'm not sure whether to or not. It definitely keeps me busy.
I'm still pretty confused on the nodes. So I see some of you have just one or 2 lympnodes I had 5 positive... So I'm guessing that is pretty bad right? where does it go to next?
SCC 12/13 - T1N0 1/28/13 - removal of tumor Rt. Tongue clear margins 5/14 lump under chin, 8/14 FNA showed C and CAT 8/25 neck dissection, 14nodes removed 9 clear 5 with C Extra Nodal Extension not present 9/9/14 tumor board meeting to determine RAD and poss chemo treatment
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Great suggestions above! Re the lymph node question, perhaps someone else can address that. Re stress - when your mind starts going over all the ways things might go wrong, just give them a time limit, like a minute or two and then force yourself to think of all the ways things will go right. Just take one possibility at a time, see if there is something you can do about it, or delegate someone else to do it and then move on. Make a list, and then check it off. This will release it from your brain and you can always come back to it later. . . . because you have already done something about it and you will feel more in control of the situation. Some things we worry about never happen anyway. Take deep breaths, do toe touches, yoga that gets oxygen to your brain. It takes practice. Come here often. It really helps. I was a basket case of anxiety and stress when caregiving for my son and we both made it through with this great forum and the people in it. You will too!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | My doctor said to me in my first consultation after the diagnosis, you need to understand your full time job now is beating this disease. For example juicing. Normally not something I would bother with, makes a big mess for a small amount of juice. But fresh juice is very beneficial, and he suggested doing that and considering the exercise to be part of my "job". Things like regimenting your sleep and exercise patterns, diarising your food, medication and toileting, there are plenty of things that are beneficial (not all essential) that can fill your day. I've been off work since the diagnosis in February, but not everyone is able to take that long off.
Kids (grandkids in my case) were an enormous tonic to me during treatment. They had to use Poppy's special soap (hand sanitiser) when they came to visit and they brought in my meds and their priceless cuddles. The other focal point was my dog, she knows when its late in the afternoon we go to the dog park and becomes increasingly insistent as the day drags on. Many many days she was the only reason I would get out of bed at all.
Every situation is different, but I would be cautious about the idea of "keeping busy". Mainly because if it all gets too much to handle it can depress you emotionally, even if you're not working. Depression and anxiety can interfere with healing quite a bit. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | A year ago at this time I just started my radiation. It was a very dark time for me. This forum kept me sane. I didn't post a lot, but I came here and was comforted by the kindness of everyone here posting to others. I knew I was in great company and great understanding here. My radiation journey was not as awful as others have experienced. I'm not saying it was easy and like everyone here I deal with the aftermath. However, I can't emphasize enough that a year has made an incredible difference. I'm back to my normal life and at full steam ahead. One thing that helped me, I let myself grieve over my situation. I told my self for six weeks during the radiation I'm going to allow myself to be melancholy. I also told myself I need to laugh at times, and think of others needs. I had support here from a few people through private message and also supported others who needed encouragement through private message. That was an incredible help. Whatever method works for you...do it. Best wishes to you, eat eat eat, juice and drink plenty of water! Blessings --
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
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