| 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 | My reading of that report would indicate all is well re the nodes but as always I would advise waiting and watching.
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 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Agreed, usually if we is something specifically concerning they will definitely say it of concer or needs watching. Glad it makes things a little easier. Hugs have a good weekend.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2012 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2012 Posts: 27 | Well, I just got back from my appointment, and I must say I have never been treated so poorly in all my life. First off, my doctor basically read me the radiologist report word for word. Mind you I was told without this appointment I would not know my results.
Before I went in, I made a list of the symptoms I've been experiencing over the past weeks, which are a lot of the same ones as before but increasing in severity and occurence. I know how busy the clinic is and I try to be prepared so that I don't forget anything and so that I don't have to waste time trying to think of everything off the top of my head.
He has completely ignored nearly everything I've said to him and told me I need to get exercise. I've been exercising the only way I can currently which is in the pool. I go out 3-5 times a week. Basically what his attitude is telling me is that I am being dismissed as an overweight, ex-smoker hypochondriac. That dismissive attitude has been present since day one.
The one possibly good thing that came of the appointment was a referral to an ENT. The ONLY thing he actually was curious about symptom-wise was the sore inside my cheek that has now been there for at least 14 months. I'm also pretty sure the only reason I got the referral is because he doesn't remember me telling him a few months back that it had already been biopsied. Believe me, I am very thankful that he at least looked at that, though it very well could take another 3 months for that referral to go through. It was biopsied and had fully healed back in February, but has since opened back up with a whole new kind of anger.
I was so happy when I finally found out I was approved for insurance because I truly thought in no time I would be finding out what is causing all of this. I am truly feeling defeated right now. My doctor lied to my face more than once today. The first was about the ultrasound. He said a neck ultrasound includes the thyroid...for those of you out there who need one, it does not. The thyroid US is a completely separate procedure and because it was not specifically ordered the tech refused to do it. When I told the doctor that, he said with a smile, "That is because there is nothing wrong with your thyroid." Then I asked him to do the thyroid panel which he said we needed to do in 6-8 weeks. It has been three months. He said, "It is too soon". All of that while sarcastically smiling and backing out of the room while I was still trying to talk to him.
Has anyone experienced such a thing? I know I haven't. I've never much cared for going to the doctor, but I never would have expected that. Anyway, sorry for venting. I am just so sad. I feel like I am losing the will to fight and I don't even know what I'm fighting yet.
33 yr old female, former smoker of too many years. Currently awaiting results of a neck ultrasound.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | I can totally see why you would be furious. You have to get someone else! YUCK! When do you see the ENT? That is a good thing at least. I would have had a hard time not calling him a pompous a-- and walking out on him. Would be interesting to know if he treats everyone that way. Hang in there. I'm so glad you are comfortable enough with us to share what's happening. Will be waiting to hear what the ENT has to say. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Sometimes drs have a preset notion of how things are they make up their mind and to accept the possibility of another idea might mean they're wrong. See someone else.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2012 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2012 Posts: 27 | I am going to get a new doctor. Last week he sent me out of the office telling me he was referring me to an ENT. My discharge paperwork even has that noted on it. I call today and find out he never put it in the system. Unbelievable. I suppose I really shouldn't be all that suprised at this point, but somehow I am.
I called to report him to my insurance and I was told I have to call the clinic's administrative office to report my issues. I can just imagine the awesome level of care I will receive at the clinic after putting something like that in motion.
Anyhow, just thought I'd update.
I was wondering, is there anyone that has been diagnosed near the San Diego area that may be able to refer me to someone who specializes in this area?
Last edited by Penny_T; 10-02-2012 03:41 PM.
33 yr old female, former smoker of too many years. Currently awaiting results of a neck ultrasound.
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