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Joined: Feb 2004
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JeffL Offline OP
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I had my most recent follow up appointment today with the surgical oncologist/ENT, who indicated that there is no evidence of disease and that everything looks great. The medical oncologist scheduled a PET/CT for tomorrow, which should serve as a baseline. With my radiation fibrosis in the neck, I am sure the PET will come back with some "interesting" results.

At the end of my appointment, the Dr. asked if I would mind talking to a new patient in the next room, who has a similar diagnosis to mine, but is just starting the whole process and was very scared. Of course I agreed.

Let me tell you -- walking into that room was one of the most powerful things that I have ever experienced. Seeing the look on his face, I went back immediately to how I felt when I got the diagnosis. Similarly, the wife's pained expression was way too familiar. We talked for about 20 minutes, going over my experiences with treatment, eating, side effects, etc. I don't know if I helped much, but they seemed better at the end.

It really made me appreciate the weekend I had -- Saturday visiting our son at college, watching him perform in the marching band, etc., and Sunday playing in our club's closing golf tournament under perfect weather (a rarity in Ohio). It wasn't very long ago that I was seriously doubting whether I would ever do either of those things again.

Just wanted to share my experience and bring folks up to date. You are all the best!!


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!!
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Jeff,
That will have been brilliant for those people!
To see a living, breathing, walking and talking person with same diagnosis MUST have given them hope and strength to go forward!
Well done that man!

Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
Joined: May 2007
Posts: 621
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Hey Jeff

I second the feeling. When I was first diagnosed, I was introduced to a girl that had just gone through treatment. What a help she was to me and my wife.

I have now had the opportunity, like you, to give a bit back by sharing the experiences I had with another just getting started. Very powerful indeed!


Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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Even after 5 years, my docs still call me to talk to scared patients. If you let your medical providers know you are available, you will be called on to help quite a number of people. In my case several have become good friends. For the ones who do not have access to the Internet and OCF, person-to-person contact can be a lifeline. I highly recommend this.

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Jeff,
You had to be a real blessing to these people, to see someone that has actually lived through the experience. I am beginning to realize, as a health professional, that though we are great at doling out advice few of us have actually experienced the side effects of the treatments we give! I am so happy to hear you can enjoy things again!!
Liz


CG to friend Mary. SCC Stage IV-A of rt. tonsil, mets. to lymph node on rt. DX 06/07,tonsillectomy 08/07, Chemo Cisplatin, Taxotere and 5FU X3 cycles; RAD completed 1/20/08 RND scheduled for 3/08. 54yr.old, NS, social drinker.
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Patient Advocate (old timer, 2000 posts)
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Jeff,

First of all congratulations on your great checkup and doing all those things you thought you would never do. I could list at least a hundred that were on my list.

Secondly, you may think that you didn't have a big effect on that couple, but I'll bet they would tell you that you did. I think that what Joanna has been doing is a great idea and I intend to contact my surgeon and let him know that I would volunteer to speak to anyone that needs some support. You are off to a good start already.

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 15 year survivor.

"Whatever doesn't kill me, makes me stronger"
Joined: Aug 2003
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I do the same as Joanna. My docs office refers patients in this area to me and I either meet them at the office or go to their home. Some of them show an interest in an ongoing relationship during their treatment,etc., some make it plain that they are very private and prefer to share what they're going through only with family memebers. Some I'm still in touch with to this day and it's great having someone like them to talk to. Giving back does something for the human spirit.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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"Above & Beyond" Member (500+ posts)
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Jeff,
Congrats my friend on your good follow-up.
I'm sure that having you to talk to was most helpful. A first hand experience can be more beneficial than all of the Dr.'s advice.
You are definatly a champion!!

Cheers,

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.

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