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JillieD #184165 08-10-2014 09:58 AM
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Thank you, Brian,

My husband fits the pattern you describe. His tumor size was considered small mass with relatively large node size. According to Dana-Farber Cancer Institute, this put him borderline for treatment with induction chemo. That was 6 years ago.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
JillieD #184166 08-10-2014 09:59 AM
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Brian, could your explanation be the reason my primary pathology was in situ but still metastasized to cervical lymph nodes?


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
JillieD #184168 08-10-2014 12:20 PM
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I remember the ENT telling me that the only way he found Kevin's tumor was by, under anesthesia, putting his fingers down Kevin's throat and palpating his base of tongue area. He found that it was concave shaped. He then cut by feel since he couldn't see it. Three years ago now....


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
JillieD #184175 08-10-2014 10:23 PM
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Uptown. Exactly these things are really small in some people but the tonsil and the lymph tissues on the base of the tongue and later l tongue boarders are part of the immune system/lymph system; and even a cancer small enough to be considered in situ is mature enough to cast off daughter cells - right into the lymph drainage passageways and down to the nodes, which are of course another step in the immune system components. They are designed to trap all kinds of detritus and cancer cells qualify.

Luckily SCC seems to stay in the regional nodes for some time, because if it did not, those drain further into the nodes in the upper body, which are close to vital organs. That is how mets that become terminal move in addition to the circulatory system.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
JillieD #184242 08-13-2014 10:47 PM
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This has turned into a very information discussion. Brian, thank you for your very knowledgeable input!

In light of the equal opportunity layer of blame theme this post has turned into, let's not forget that not all pathologists are created equal.

I found out the hard way! I had surgery #1 at a small local hospital and my biopsy slides were reviewed by the pathologist on staff. I was given the all clear. Well I found out months later that he "misread" my biopsy slides, and in one of them there was actually cancer at the margins.

This lead to months of doctor appointments (2nd & 3rd opinions), multiple scans and tests, and many sleepless nights. The recommended opinions started with more surgery and RT, to the final 2 options - RT alone or "watchful waiting". Surgery was ruled out by the doctors I consulted at this time.

I ruled out the "watchful waiting" option - just felt I needed to do something! So off to get fitted for my radiation mask and started the 7 weeks of RT. Looking back now and being now a more knowledgeable patient thanks in part to OCF, I'm not so sure I made the right choice.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jan 2013
Posts: 1,291
Likes: 1
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Sorry to hear stories about serious mistakes such as yours. You always have to keep your antennae polished and your sniffer super clean to know how things seem to be going.

All the people involved with your health care are just that - people, human beings. We all strive to be 100% professional while on the clock but human nature has a way of affecting our daily performance, no way around it.

It is so vital to not only trust your doctors but also keep aware if you pick up on any off-kilter judgements or reasoning.

But this is nearly impossible when trying to simply digest all the chaos while undergoing diagnosis and treatment.

Hope all readers take notice and be on constant alert and not be shy getting other reviews if at all concerned.


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
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