#91005 03-02-2009 07:18 PM | Joined: Feb 2009 Posts: 21 Member | OP Member Joined: Feb 2009 Posts: 21 | Do you ever feel like this is it, you are just snowballing down a mountain and there is no way to stop it, no way to fix it??
H is in the midst of radiation and chemo for the second time. This time, it was because of a large tumor on his left neck (he had chemo and radiation a year ago for his right neck, where there were 9 positive nodes). Anyway, Ok - so I accept it is back, and was ready to just do the treatment, then the surgery. I was prepared. I felt we had a plan. I felt that it would be under control. But here we are in the midst of treatment, and H confides that he thinks the tumor has gotten a little bigger (it had shrunk a bit) and that he feels a small lump now on the back of his neck. After all we have been through, I just feel like this is the beginning of the end. And I don't know why and I hate that I can't stop it. My God - I am totally changing everything - the way we eat, our stress levels, everything, but I feel like it is all too late and there is nothing I can do. We see a doctor tomorrow, inevitably, they won't know what the new lump is and we will get no info that makes us feel any better.
I hate this. __________ Angie Husband's history: Stage I sore on right tongue, removed by surgery 7/06. In 1/08, noticed small inflamed node in right neck. Radical neck, 8 positive nodes, cisplatin and IMRT to bilateral neck for 6 weeks. 12/08, large tumor in left neck. Needle biopsy positive. 2/09, begin taxol and carbo and more rt. Rad neck to follow in April. | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | And you have every right to hate it. Reading your post I could feel my stomach drop as your husband advised you about the lump size and new lump.
You are right - we don't know what it is right now, and you likely won't know tomorrow either. Perhaps its just his body reacting to the treatment??
In the meantime, TRY to breathe deeply and go forward calmly. There is not one thing you can do to change whatever the prognosis will be - that would be like trying to influence the wind.
I soooooooo wish there was something more I could do to make this time easier for you. Know we are here for you. Let us know what happens.
(((((((((((((((ANGIE)))))))))))))))
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | There is no question that this disease is like climbing on a roller coaster with no brakes.You just keep on going up and down,when all you want to do is get off and put your feet on firm ground.I hope your news isn't too bad Angie,but all you can do for the moment is cling on for dear life and hope the ride stops soon.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Angie, Controlling stress levels is the hardest part of your caretaker's job because there is only so much you can do. For now you can get some comfort that the current treatment will take care of anything going on. I send pratyers that this will turn out OK.
Liz - Your description is a classic. You certainly deserve a rest after the past few years.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | Angie...You are definately not alone in how you feel. Like everyone here told me when I first joined that I am stronger than I think and they were right. Do I still fret and am concerned with every sore throat, pain, lump or irritation...you bet but in the end Donna is right we just gotta keep adjusting the game plan the game doesn't change just the rules...I hope you find comfort in your friends here and lean on those around you. It's ok to be human. Although being a mom it sometimes feels like we have to be super human. But remember keep your eye on the goal and even though the route may change...the goal is still possible. You are in my prayers and thoughts ...keep posting it helps to talk to others experiencing this journey!!!
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Feb 2009 Posts: 21 Member | OP Member Joined: Feb 2009 Posts: 21 | OK - doc thinks the little lump in the back of the neck is just a node flaring up because it doesn't like everything going on. And - he says what he thinks Joe is feeling is not the tumor, but scar tissue from the radiation. He said it feels really good to him - and he will be rescanning next week so he can further finesse his RT plan. We see onc on Thursday, will ask him all the same questions!
Thank you all. Sometimes, even just writing it out makes it better. I actually feel like a jerk sometimes for letting it get to me - I am not the one going through it all! And Joe, my husband, has been such a huge trouper. But I am the one taking care of him, and of our 5 year old and 2 year old, and trying not to get fired (my job has been super to me but when you are a young lawyer, billable hours reign supreme and I just worry so much about keeping employed, esp. if H does die)...sometimes it gets to me. Oh - and the guilt of feeling bad for myself!!
OK - so anyway - looks like we survived today! Which is great! And I am in a much better place! Thank you all!
------- Husband's history: Stage I sore on right tongue, removed by surgery 7/06. In 1/08, noticed small inflamed node in right neck. Radical neck, 8 positive nodes, cisplatin and IMRT to bilateral neck for 6 weeks. 12/08, large tumor in left neck. Needle biopsy positive. 2/09, begin taxol and carbo and more rt. Rad neck to follow in April.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | None of us who have cancer think we go through this by ourselves. You ARE going through it and in lots of ways it is far harder on the caregiver than on us. One day a good friend came into the Radiation room to see how they put the mask on, and what the whole process was like. She told me afterwards that she went back to the waiting room and cried and cried. It was hard for her to see me on the radiation table. It wasn't that difficult for me to go through the treatment.
Do not EVER feel badly for posting your honest feelings. Those feelings are shared by other caregivers and remind us who have or have had cancer what the caregivers go through.
Glad the news today was encouraging. One day at a time. We are here for you.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | You are enduring it Angie- Its hard to watch the lvoe of your life go through these harsh treatments. You are beinga wonderful supportive spouse and Mom holding ti all together. Don't feel guilty about feeling upset. You are human- well actually you are being a super human right now!
We are here for you to help you and support you.
Hopeing for the best possible result
KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Angie -- It is hard not to be dramatically affected by all of this, and to react strongly to every piece of new. I told my wife (and continue to tell her) that this disease is harder on the loved ones emotionally than it is on the person with the disease.
Example: Last night, my wife was acting a little "funny" -- nothing dramatic, just a little different. After 26 years of marriage, I pretty much know when she is upset, so after some coaxing, she told me. The brother of one of her law partners died from this disease yesterday. He had posted here a few times back in 2007, but did not stay with the community, and generally did not have a good attitude toward treatment. He had a recurrence, and apparently elected not to treat it. Needless to say, it sent a flood of emotions going for my wife, and I had to reassure her that his situation was different, etc.
We are all only as good as our last checkup. After awhile, it gets easier to deal with that reality, and as time moves on, and the odds shift a bit, the mind eases a little, at least for me.
You are doing great, and glad that the doctor does not think the new issues are anything dire. Keep posting here!
Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Angie, I am so glad to hear the results. It's always good to be able to express what you feel. Sometimes just writing or saying the words helps.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Sounds like fantastic news.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Angie,
I'm SO happy that you got some good news. That is just wonderful.
About your feelings, what you are feeling is normal, please do not beat yourself up over what you are going through. Cancer is hard on the patient and the family. Especially the spouse. I am almost happy to be the patient. I think the caregivers have it worse.
Also, when I was diagnosed and 2 years after I didn't let myself feel anything. I didn't really talk about it and I NEVER said cancer. I always said "when everything happened to my tongue" finally I had a panic attack and that was no fun. The point of my long story is...feel what you need to feel and talk about it. It is healthy and good. That is what we are here for. Feel free to send me a PM any time to vent!!
xoxo Suzanne
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angie I really admire you for your courage. The one I got divorced for ran like a rabbit and has never looked back, She would in no way believe that the cancer works on the mind of the one that has it. Oh no, I was just mean . But whenever I asked how was I mean, the only answer I got was that I was just mean is all. Mean isn't in this body at anytime.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 216 | My husband has never had mean in his body either but with this disease the anxiety has a real hold on him which translates into, maybe not mean, but the worst case of PMS a man ever had! yee haw! The antidepressant and antianxiety meds for him have helped - the antianxiety med for me has controlled my own smart mouth This is not a pretty scenario for anyone but if you just keep putting one foot in front of the other it's doable. One day at a time....
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | 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 | Angie
This is the place not just for medical info, but also for support. As a caregiver its a difficult job that you have. On top of that, you are balancing young children and working. Thats alot going on right now for you. Glad that the doc reports have positive news. Remember, we are here not just for your husband, for you too. 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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angie let's not sugar coat this. the answer is YES, this is it and IT SUCKS. Let yourself be angry, CRY to yourself. I stayed "tough" the whole first time round but recurrence is a total bitch. Hope is all there is left 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I am laughing. No one but you ladies can express your feelings like you do. I hope most of the female population never changes. I luv all of you ladies. You guys too but I'll sure deny I said it.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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