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Joined: Jul 2014
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I am the "manager" of this situation, this disease and everything else that goes along with it. My husband was diagnosed on 6/14 with squamous cell in his lower right jaw. It has apparently eaten away most of the bone mass and he needs to have his right side jaw removed and a "radial forearm free flap" to replace it. Since diagnosis his chin has gone numb and the Dr indicated that the cancer has probably effected the nerve. The PET scan indicated that it has only spread to the lymph nodes on that side. - We were given tentative surgery dates of 7/16 but now are told that they want to set us to August 13th. I am scared to death about the delay. Does anyone else have experience with waiting 2 months to START any kind of treatment? I just want to get this show on the road - nothing is going to get better till we start getting it done. And so he gets to sit here miserable in pain for another month just waiting...?


T3N2M0 stage 4 tumor removed from right lower jaw on 8/1/14.
Radiation is a definite find out about Chemo on 8/27.

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Yes, I waited 2 months from the point of being diagnosed with Stage IV OC, needing a mandibulectomy. My doc allowed me to select my date of surgery and I insisted on waiting until after my son's birthday.

The surgery is a very long one, 10-12 hours (possibly even longer). This can create scheduling issues for clearing the OR schedule. One doc needs to reserve the room for a good 12 hours.

Try not to second guess things. It only causes extra unneeded stress which isnt good for either of you. While waiting, keep busy by making the most of your time. I took my kids zip-lining, rock climbing, 10+ mile bike rides, hit every carnival and fair in the area, went to the movies, even the drive-in movies. I worked hard to stay very busy so it would keep my mind from worrying about things that I could not control. I was determined to make the best summer for my children "just in case". I wanted to be sure if things didnt go as planned they always would remember their mother as a fun, happy person who took everything in stride and made the very best out of any situation. I know its so hard waiting, Ive been there too.

Hang in there!!!


PS... If pain is an issue, speak to the doctor and get that in line. Being in pain is not productive to anything positive at all. Make sure he is comfortable but not too doped up to function as normally as possible.


Christine
SCC 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 smile
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Your description of the damage already done seems extensive so I'm surprised they are pushing him back another month. I would push to get answers.


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.
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We waited six weeks after diagnosis for radiation and chemo. That is a target set by our provincial government. The time passed fairly quickly as there was so much that needed to be done prior to treatment commencing.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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I've always had to wait. Living in a city where things can happen in a minute, treatment, surgery doesn't always go that fast, and also depends on how busy the doctor or hospital is. Sometimes it's better to delay, for various reasons, since whatever is done can't be taken back. On the other hand, cancer can progress quickly in a short time, and was always anxious to start, not that I even wanted it. I vaguely remember hearing there was some sort of guideline for a max two month time wait to start cancer treatment by CMS (Medicare, Medicaid), which was changed to 30 days?

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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I would suggest you gauge and or push for sooner based on your husband's pain level. My husband waited 30 days for his mandibulectomy surgery and the last week and half was very painful for him. If he's not in pain, have as much fun as he can and wait it out. If he's in alot of pain, then the sooner the better


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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We are 3 weeks post surgery. Surgery was done on August 1 after I had a "fit". The cancer was more extensive than they had hoped but they believe they removed everything. He is set for radiation and chemo consults tomorrow. Dr said he will defiantly be receiving radiation as it was in one lymph node and surrounding his facial nerve. Thank you for you kind words and encouragement.


T3N2M0 stage 4 tumor removed from right lower jaw on 8/1/14.
Radiation is a definite find out about Chemo on 8/27.

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Sometimes a "fit" is necessary, unfortunately. Three times in my cancer experience I've had to have a major meltdown to break through that implacable medical wall. Surgeons are fabulous and save our lives but sometimes we are our own best advocates:)Great news that they think they removed everything. A good base for the radiation and chemo if he has that as well.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.

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