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Joined: Mar 2010
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"OCF Canuck"
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"OCF Canuck"
Senior Member (100+ posts)

Joined: Mar 2010
Posts: 126
Julieann, yours is another cautionary tale. I have to give credit to Gordon for not being satisfied with the initial false negative biopsy. I was quite annoyed with him, because I sure wanted to believe it was nothing. However, we both thought the the lump should come out, because as Gordon said "I don't know what it is, and I don't know why it's there. Until I do, I won't be satisfied." (or words to that effect). We were lucky to get to the right surgeon who was older and very experienced with this type of cancer.
I guess diagnosis can be hit and miss and it sounds like you did all the right things - pushing for answers when you knew something was wrong. I wonder how many people die because they assume everything is OK because their doctor said so? Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
Joined: Jun 2009
Posts: 875
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jun 2009
Posts: 875
Anne (why did I call you Elianne?):
You're right about getting the right surgeon/physician. Even the problems I have now, whether they're effects from radiation/chemo or not, I seem to have to argue with some doctors to "please" check for something else, instead of assuming they're from the radiation/chemo. One doctor tried to blame troubles I was having with that and I finally found a good doctor (who was an older and very experieced doctor, by the way), found out during an endoscopy that I had accute acid reflux and some other gastro problems. So, keep on your toes with problems Gordon may have down the road that are blamed on his treatments. Take care.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Joined: Feb 2010
Posts: 235
SusanW Offline OP
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Joined: Feb 2010
Posts: 235
I give you guys a lot of credit. I think I would have been so happy to hear it was benign that I would have had Dave off the table before he could button his shirt. I will never have that attitude again.
I know that there has to be a balance between thinking every lump is something and also being very cautious.
The stories here are a very good example of patients being advocates for themselves.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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