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Joined: Dec 2014
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Posts: 24
Hi there...back with some more questions for all you experts smile

Due to micro infiltration into some of the vascularity around the original tumor site, my docs are advising that I go through a full round plus (over 6 weeks) of radiation and something called chemo lite. So...

1) If all of my nodes are clear and there are no metastasis, why is the extra long radiation (with its subsequent life long after effects) warranted?

2) Anyone have any experience with chemo lite? From what I understand, it is given once a week and is far better tolerated than the full regimen. Just trying to plan ahead and be prepared.

3) My family is hounding me to get a second opinion (City of Hope). While I am completely happy with my current doctors and care, they still think I need to get another opinion. Anyone have experience with City of Hope for SCC? (Apologies if it is a no-no to solicit reviews about specific cancer care centers).

Thanks for your sage advice,

HB



11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...
Joined: Jun 2007
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Patient Advocate (old timer, 2000 posts)
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Just like with any major medical procedure, its always smart to seek out a second opinion. Some patients will go for a third or even fourth opinion. When seeking out another opinion its best (if possible) to get seen at a comprehensive cancer center (CCC). There have been studies done proving a CCC has better outcomes for patients, especially with complicated cases. Think of it this way, would you rather get your car fixed at a small shop where they might only work on your type of car and mechanical issue a couple times a year or a place where they do it every day, several times a day. Sure the people at a small place might be your neighbors or relatives and great people but the big guys are the ones who are more proficient and experience really does make a difference. A BIG difference! So before you begin anything, please get another opinion. Your life depends on it.

Best wishes!!!

NCI CCC list


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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1. Sounds like Perineural Invasion, PNI, or other negative prognostic factor for recurrence or tumor spread. Being its micro, more surgery may not get it all, can't be seen or is adequate enough, so radiation can to a broader area.

2. The only thing I heard is doing light chemo. Meaning a small dosage to cause less toxicities, one that is not that toxic compared to others and or a targeted therapy, all which may be used as a radio-sensitizer to make radiation work better. I had so called light dose chemo, taxotere, Carboplatin, and Erbitux, a targeted therapy, at its usual dosage. No matter what they call it, all have some type of side effect.

3. A 2nd opinion is always good, but treatment shouldn't be delayed too long. They usually like to keep the total treatment package, including surgery, less than 100 days. I'm not familiar with the hospital.

Good luck with everything.


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






Joined: Jan 2013
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Hi Heather,

Getting a second opinion is a good idea. UCLA is a great place. It sounds like the doctors are concerned that some cancer cells may have escaped the local site and want to maximize a curative outcome. Radiation will be able to cover the entire area and kill any cancer cells in that zone.

It is difficult to weigh the benefit of radiation against the long term effects. All my doctors and myself were of the goal to hit it hard the first time rather than going with less aggressive treatment and potentially leaving some stray cancer cells to turn into recurrence.

Getting a second opinion allows you to get a different take on your situation. This whole thing has a science basis but there is a lot of room for various treatment plans.

Good luck,
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Dec 2014
Posts: 24
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OP Offline
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Joined: Dec 2014
Posts: 24
Thanks so much for the detailed information - it helps me research and understand my situation and the possibilities.

I will do an update as soon as we settle on next steps (which I have a feeling will be the full run of rads & the chemo lite (light?) my team originally planned.

Appreciate your feedback immensely!

HB


11/2014 - DX SCC, S3N0M0
Non-smoker/drinker/drugs, no cancer of any kind in family, HPV negative
2/10/15 neck dissection, nodes removed (all clear), moderately differentiated mass removed from cheek & hinge of jaw, free flap graft. Clear margins. Micro infiltration into some of the vascular structures in the local area of tumor. PEG tube 1 week later
4/6/15 - Begin 40 Rads & 4 rounds Cisplatin
5/27/15 - rads & chemo complete.
12/5/15 - PET/CT clear. Watch & wait...

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