| | Joined: Apr 2007 Posts: 93 Supporting Member (50+ posts) |  Supporting Member (50+ posts)
Joined: Apr 2007 Posts: 93 | Pookie,
Sounds like your at the right hospital to get the best advice on what path to take. AJ above didn't have the radiation and is doing fine, whereas my sister chose not to have the recommended radiation, but after 4 reoccurences, and 4 surgeries, the final option was the IMRT and chemo. She tried to beat this monster with a natural holistic approach and multiple surgeries. It just kept spreading, even though she was physically strong throughout the multiple surgeries, by the time she underwent the IMRT and chemo she was in a very weakened state. One thing I have learned is this is an aggressive cancer, even when caught early. Your desire to throw everything you have at it, is a good and positive attitude to have. Your in my thoughts, be strong and survive.
Nancy
Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
| | | | | Joined: Feb 2008 Posts: 19 Member | | OP Member
Joined: Feb 2008 Posts: 19 | ok, here I am back again..the surgeon called last evening and spoke with my husband (po'd me to no end since he should have spoken to ME!) Said the tumor board at CCF agreed that since the lymph node was "So small" and with no spread, no radiation....he'll see me in May!
I'm freaked out, my husband is seeing this as good news. I've left a message for the dr. to call ME!
51 yr old female...dx 12/28/07, partial gloss 1/23/08, nd 3/5/08. Opened the neck AGAIN, 5/21/08. Non smoker, occasional drinker. Additional node pos. 6/26/09, Starting rads and chemo (5-fu, Cisplatin) 7/13/09 T1N2MO. Almost 2yrs out of treatment and feeling great....
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | I think I would want to speak to DR directly as well ... and maybe even speak to someone on the tumor board so that you could voice your concerns and fears and have them explain the decision to you . I did not have Rad , I also did not have a Node pOsitive for cancer ... And I still question that decision often .
So I don't think wanting to speak directly to the Dr is anything unreasonable !!
Good luck and please let us know how you make out !
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Sep 2007 Posts: 79 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 79 | Wow - that is unbelievable that your doctor did not speak directly to you. I hope that you let him have it!
Taking a bigger picture view, it sounds like good news, though!
Jean
* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | HI Pookie -
I just wanted to add our experience. When my husband was first diagnosed back in '02, he also had a neck dissection, but there was no cancer in any nodes, so it was a unanimous decision not to undergo radiation/chemo. I DO remember them saying, depending on staging of the cancer once surgically removed, that even finding cancer in up to one node, if the cancer is contained and small, rads MIGHT NOT be recommended. He has had 3 recurrences, but because he is monitored so closely, they catch them early and they are surgically removed. His last one on his lip was in situ and may have been sun damage, not really related to the cheek and gum cancers he had before. He is doing well. Good luck on your decision making process. Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | 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 | Pookie,
You can always get a second opinion but, believe me, if you can avoid the rad Txs that's a GOOD THING.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Pookie,
First of all congratulations on the good news.
Secondly, if you did not sign anything giving the doctor specific instructions allowing him to discuss your situation with your husband, he is not only out of line, what he did is against privacy laws.
I would let him know, for sure.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | lostpassword - doesn't it concern you that there have been three recurrences since the original treatment? There is no reason to believe that this will not continue to happen. Where I in that place myself, I would want multiple opinions from radiation and chemo doctors to confirm that this continued monitoring and surgeries was the right path to be on.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have never agreed with anyone one more than I do Brian Hill on this issue. I keep getting opinions from 3 Drs and I sure am grateful they tell me up front what's going on. Good luck and go for 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
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Lotts ,
I too think that I would question it and want further treatment .... I would not be comfortable with one reccurance let alone 3-4 . I somewhat understand the if you are a stage one and no nodes positive then they dont always reccomend Rad or chemo as that was my situation ...BUT ON A reccurance .. I think I would be venturing off for a second opinion ..
That however is Just MY opinion ... I hope that all is well with you and your husband !!
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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