| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Eileen:
I hope your appointment went well. Its quite a coincidence that every year on July 2 you have bad news. You are right with being optimistic with it not being cancer this time. Hang in there. If you beat cancer then you can do anything.
Christine
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Left the house at 11:29 for 12:45 appt yesterday. Arrived at hospital at 12:30. At 1:30 they tell us dr had been called away for emergency surgery they don't know how long he will be, at 2:00 they say go to lunch for an hour, at 3:00 still no word on how long, at 3:45, told to go home, he doesn't know when he will be done. Get home and there is a phone message on the machine that was left at 11:33 from the hospital to call so they knew when I arrived that the doctor was in surgery. The appointment is now 10am Friday.
While I understand that emergencies occur, this will be the third day I have had to take off from work to discuss this surgery. On the first appointment he couldn't get to the CT scan results. I had hoped to have had this surgery over and done with two weeks ago. Now there are going to be interfering with my vacation in August. Hope to find out more on Friday.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Eileen, Aargh. I hate that attitude that when you need a procedure done, you should be infinitely flexible in when your apppointments happen and when the surgery happens.
I am running into the same thing with my two docs who will do (I hope) the coronoidectomy. The ENT said, over 3 weeks ago, he would coordinate things with the oral/maxilloficial surgeon but apparently nothing ahppoened for a weeek and 1/2 and then when his nurse finally tried (after I made several phone calls asking what was going on), the oral/maxillofacial guy was away on vacation. I was so ticked off. Anyway, that was last week, he is back now but still no news about when they might be able to schedule this surgery. I have been calling daily this week and hope to hear tomorrow (of course that's what I hoped yesterday). I've made it very clear that if it doesn't happen in the next couple of weeks, it won't be able to happen until next summer as I have to be back in the classroom (part time but still) the Thursday after Labor Day and there is a several week healing period. Then there's also the matter of the D&C my OB/GYN wants me to have. They've said that can wait 6-8 weeks so it can wait until I've healed from the coronoidectomy as long as it happens soon.
I had hoped I would get a date a few weeks in advance then be able to plan a vacation but instead I've been hanging around talking to doctor's receptionists every day. Oh well--I'm also getting a lot of gardening done and my garden needed it!
Anyway, sorry to turn this into my own whining but this is all to say I feel for you because I'm running into the same sort of stuff and it stinks.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | So it gets worse. I saw the doc on Friday. He has no surgical openings next week and leaves on vacation on the 18th returning the 26th. I leave on vacation the 4th of August and he can't guarantee I will be well enough to go. So I say OK, well do it when it get back. How about Aug 14 or my lucky surgery date Aug 15th(both my cancer surgeries were coincidentally done on that date). Nope he leaves for vacation again August 14 until the 25th. Then he tells me he won't even consider doing the surgery until I see a stroke neurologist to see if he agrees that stenting a 95% blocked artery is a good idea if patient is asymptomatic. Last Decemeber he was already to do it when it was 70% blocked. Didn't mention sending me to neurologist then. I'm trying to get this done while I still have house at shore so I can recoup down there on 1 floor. This guy is pissing me off.
He had assured me on July 2 that getting a surgical date the week of the 14th of July would be no problem. Now I can't even get one in mid August. He is offering to set me up with another surgeon in the dept after I see the nueorologist but I didn't want to have to explain all the other possible complications to a new doc. This is beginning to sound like Nelie's problems getting surgery scheduled. Glad it is only a stroke were are trying to prevent and not cancer. GRRRRR
Sorry for venting but I needed to blow some steam. Will keep you posted on this saga. Let's see how long it takes to get appointment with neurologist.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Eileeen,
I'm so sorry to hear about all of the problems you're having with getting your surgery scheduled. When is enough, enough? You dsereve better.
I hope that by some miracle you can get this worked out sooner. I'll be thinking of you.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Eileen, you are due for a big break . You sure have been put off enough times. Maybe now the odds will work for you. I'm in your corner for sure as we all are.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Eileen, I have decided scheduling surgery in the summer, when docs go on vacation, is just the worst time! Your story just confirms it for me. I finally heard about a date for mine this morning with a different oral surgeon, after a month-long run-around so you definitely have my sympathy (and I still haevn't tried scheduling the D&C--dreading that).
I hope you can at least get in to see the neurologist quickly.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Well I finally got an appointment with the neurologist this Weds at 2:00. They have to page him so I hope he is isn't in surgery. He doesn't normally see patients that day and has no open appointments until October.
Also got an appointment with surgeon on the 29th to discuss what the neurologist says and hopefully get a date for the surgery.
I'm now on Plavix and my stomach doesn't like it any better than it liked the baby aspirin although I don't have the bloating I had with aspirin. It is also giving me diarrhea and today it was green. That usually means blood. Not liking this at all and will discuss with doctor.
I was also reading an ad in Newsweek for Zetia which I'm on. It said that 'in rare cases' if taken with a statin, which I take, it can cause severe muscle problems. If this is what is causing my inability to walk more than two blocks, I'm really going to be pissed. I'm gonna ask about that one too but I doubt they will let me stop before surgery. I often come up with side effects to drugs, sometimes rare ones, so it wouldn't surprise me.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Hi Eileen, I certainly hope they can get you in for the surgery soon and then hopefully afterwards you can get some of the drug side effects dealt with. It's amazing how swtiching to a new drug can mess everything up sometimes. Hang in there and I hope everything goes well (and on time) on Wednesday.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi eileen
it grieves me to see you in such a rotten place at the moment,your posts have always been so upbeat and warm.In the uk at the moment the use of statins is being investigated as so many people are having serious side effects.they wanted to put my mum on them for her cholestorol but when she read the literature she flatly refused saying she would take her chances .These treatments are a lottery aren't they.
take care
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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