| | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 |
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | PET scans are notorious for false positives, (especially soon after treatments end) and I am a person that has had it happen several times. I had a very hot node in my lung that the docs were sure was a met of the cancer. It turned out that the area was a very significant infection. I had/have significant aspiration issues from my treatments and chronically develop pneumonia in my lungs from this as fluids end up in them. What I had is referred to as silent aspiration, as the patient does not even realize that a portion of what they are swallowing ends up where it shouldn't, and there is no sensation that tells you it is happening. It only happens with liquids not solids. Never the less, I had nodes next to that area that they were equally confident were a spread of the cancer from the lung... not true. Just nodes doing what they were designed to do -eliminate the by products of the infection.
Please get a second reading/opinion. While mets to the lungs are not uncommon, their might be alternate explanations. My second opinion did a CT guided biopsy of the area in question to reveal the actual situation.
Lastly, especially now with this new issue since your original posting, mental state is an important issue, I and many here have been on anti depressants during our recovery. They take a while to kick in, as much as a month, but they may put him in a better frame of mind while all this is sorted through. These combined with good personal counseling may be helpful now.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | The doctor that told me I had Stage IV cancer (an ENT) was also brutal and told me I had a 60% 5 yr survival rate after a list of horrifying surgery and treatments causing me to faint. I ended up getting 5 opinions and I'm glad I did. I hope you can find a qualified oncologist that disagrees with her and can further treat your husband.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Personally, I prefer the 'brutal' approach to soft-soap, because it gets you right through the Denial stage of grief, but I can also appreciate that the shock is more severe for some than for others.
When I went to get the results of my biopsy after 2 1/2 years of clean scans and biopsies, my friend came along -- The ENT announced that new cancer was inside my tongue and that I would have to have the free flap done -- I started asking questions about it, and we started arrangements for the MRI/CAT/PET scans for the surgeon.
Afterwards, my friend said he didn't know how I could just take that kind of news and start right in making arrangements -- That HE almost broke down and cried -- I told him I was glad he didn't because it would have embarrassed all of us <grinz>. Truth was, I had been subconsciously prepared for the bad news, esp the way my tongue was continually swelling, so the announcement really just confirmed my expectation.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | my thoughts and prayers are with you - i cannot even imagine that moment for you and your husband. i would do as brian suggested though and get another opinion / reading. please keep us posted and we will continue thinking of you.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Claudia- My husband is in a similar situation. I sent you a pm.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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