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#190547 08-22-2015 02:17 PM
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cscott Offline OP
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My husband was first diagnosed in May of 2013; we very quickly went through chemo and radiation through August of 2013..... we had a recurrence the following March of 2014; We went through a radical neck surgery in April of 2014.... it was a very long year of recovery; with many bouts in the hospital dealing with the feeding, swallowing, speech and learning how to live again with the limitations of the surgery - he has been doing so well, we thought. We now have another lesion in the same area inside mouth. We don't know what options are available, if any ... since we have already had surgery - what other options are there??? Can we have surgery again? We are feeling broken....


christine Scott
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Welcome to OCF. Im very sorry your husband and you have been thru so much. Its a good thing you have found our site to help you with info and support.

As far as options go, is this lesion cancerous? Has a biopsy confirmed it? We have a saying around here... "its not cancer until the biopsy says it is". Im hoping it is not cancer again but if it would be then yes, surgery should be one of the options. By itself, chemo alone is only for palliative care. Some patients are able to have radiation more than once depending on where the tumor is located and their history. this is on a case by case basis.

Ive had several round of oral cancer myself and also several biopsies where it has been negative for cancer. Seems like after going thru so much we all just assume a sore is cancer again. Ive been pleasantly surprised when the biopsy came back without another diagnosis. Even doctors cant tell just by looking if something is cancerous or something else. They can make a well-educated guess but its really just a guess until the biopsy results come back.

If your husband has been diagnosed with OC again in such a short amount of time, I would seriously consider getting at least a second opinion at a comprehensive cancer center (CCC). That is, if there is one your husband is able to go to. This disease is bad enough to go thru it once let alone what your guys have been thru.

Hang in there! There are several here who have been thru it multiple times. We understand what you both are going thru. As a caregiver, you have a difficult job. Dont forget to make time for yourself once in a while.

Best wishes!!!


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
Joined: Jun 2007
Posts: 595
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Hope all turns out well and this is not a reocurence for you both. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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Christine,

Welcome to OCF! Sorry to hear about your husbands situation.

I've had 3 additional surgeries after my first surgery and radiation. I know of others that have also. So yes he can have additional surgery and possibly RT, but that depends on his unique situation.

Has he been to his doctor yet about the lesion? His doctor should be able to do a biopsy in the office if he can access the lesion. Radiation did a lot of damage to me and I still get mouth ulcers that pop up from time to time and most of the time they were not cancer. I hope this is the case with your husband. If it does turn out to be cancer, please go for a 2nd opinion at a major cancer center.


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)
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Posts: 5
cscott Offline OP
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Thank you everyone.... Your comments are very helpful ... We do have appt with our ent on Tuesday ... I anticipate yes it will have biopsy right away - and yes our thought was to get 2nd opinion from cancer center if that be the case.... Thanks again - we are trying to keep our spirits up until we know something for sure !


christine Scott
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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Do you need the list of CCCs? Let me know and I will post it for you. There are also places to help with travel and lodging if you need a hand.

Good luck next week.


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
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

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Posts: 1,024
Hello Christine, I also want to welcome you . I am so sorry that you are worried again, worried as to whether it is a recurrence or not. Fighting this more than once is so difficult, it's such a long road. Other people have no comprehension of what is involved. As 1 caregiver to another, you are doing a wonderful job.
We have been through our own recurrence and Salvage Surgery. Last year Kris developed a "sore" on his tongue flap. It sent that awful dreaded wave of cold over my body. I was terrified that it had reared its head again. We Had it biopsied the following day by our ENT. It turned out to be just an ulcer. So , you dont know what this is, go and get it biopsied and I hope you get the same results we got.
Thinking of you both,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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cscott Offline OP
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Posts: 5
Went to dr today - his opinion is as what we suspected; however will wait for biopsy results... have mri scheduled for friday...

Thanks again for all the kind words and comments!

Chris



christine Scott
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Just in case you want to go for a second opinion...

List of CCCs

We are here for you both.


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
Joined: Aug 2015
Posts: 5
cscott Offline OP
Member
OP Offline
Member

Joined: Aug 2015
Posts: 5
That dreaded but long awaited phone call from the dr....only to hear Biopsy confirmed cancer again.... Dr concerned it has made way to lymph nodes and in chest by the Mri- he wants pet scan to confirm his concerns. Not even sure what to think right now - hard when there are no answers - numb.... My husband is so broken it's so hard to find something positive to bring to him .....heavy heart .... Will try to keep chin up until further test and we know for sure what we are dealing with..... Will start checking cancer treatment centers today ....And tomorrow will enjoy our grandchildren and relish in the happiness they bring to us .....thank you for the blessings....


christine Scott
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