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Cancer is back...or never went away?! #196911
08-14-2018 12:02 PM
08-14-2018 12:02 PM
Joined: Mar 2018
Posts: 45
K
Kristen S Offline OP
Contributing Member (25+ posts)
Kristen S  Offline OP
Contributing Member (25+ posts)
K

Joined: Mar 2018
Posts: 45
Hello everybody,

I am absolutely DEVASTATED! I got through the surgery, 35 rad treatments and thought I was on the mend but weird things kept popping up. Itching in my left ear, an ulcer on the top of my tongue by the suture line and an owie on the bottom left of tongue that's persisted for weeks. When the ulcer showed up on the top of my tongue, I jumped into action. I saw my oncologist and he ordered a stat CT scan. He said that the film was indecisive and wanted me to visit my surgeon. Saw the surgeon today who did a punch biopsy. He didn't even have to wait for the results. He said that the tumor was persistent and neither surgery or radiation were able to eradicate it.
He said that I am not a surgical candidate nor can I do radiation again. He wants me to meet with the team of medical oncologists to see what the next steps would be. He started talking about immunotherapy and trials. All I could think of was death. OC has gotten me. I am so upset. I have a 12 year old daughter at home who I'll miss seeing grow up. I can't handle that! I've been spending the day in bed, alternately crying and sleeping.
Next steps are to meet with the medical oncology team. How does one get through these dark days and manage?


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Re: Cancer is back...or never went away?! [Re: Kristen S] #196912
08-14-2018 12:27 PM
08-14-2018 12:27 PM
Joined: Mar 2018
Posts: 32
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Linda Linch Offline
Contributing Member (25+ posts)
Linda Linch  Offline
Contributing Member (25+ posts)
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Joined: Mar 2018
Posts: 32
Oh Kristen!

I am so sorry to hear about your news! You and I have been running a parallel pathway and you’ve been so encouraging to me! Don’t feel defeated yet! You have that 12 year old daughter to keep fighting for!

Find yourself the best medical team possible at a CCC. We will be encouraging you every step of the way. Big hugs and much strength for the road ahead!

Linda


Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection.
Now T1N1M0
Surgery 2/16/18 at UAB.
30 Proton Therapy Treatments
Cisplatin Chemotherapy
Re: Cancer is back...or never went away?! [Re: Kristen S] #196913
08-14-2018 01:56 PM
08-14-2018 01:56 PM
Joined: Jun 2013
Posts: 253
alabama
K
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 253
alabama
This is where you hunt second opinions again. Why aren't you a surgical candidate? Do other doctors have other takes on that? Worth asking. Makes sense that you can't do radiation right all over again, but the surgery ... clearly they know more than we do here, but worth asking around. I was always under the impression they could keep taking, and taking, and taking.

Thank goodness you were on top of this! ((hugs)) We're here for you, and rooting for you.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Cancer is back...or never went away?! [Re: Kristen S] #196914
08-14-2018 04:34 PM
08-14-2018 04:34 PM
Joined: Jun 2007
Posts: 10,171
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,171
PA
NOOOOOO!!!!!!

I am so very sorry!!!!! I have been thru this myself and know how devastating this can be. However... this time you already have your medical team and know far more than you did than when you went thru it the first time. A recurrence diagnosis is something you must take very seriously and not delay in getting it taken care of. Im sure this must have completely blindsided you! You just finished treatments where its awfully early for a recurrence.

First... the doc said he didnt need to wait for the biopsy results? WRONG!!!!!! Until the results come back you have NOT officially been diagnosis. Of course your doc does this sort of thing daily and knows what cancerous tumors should look like but until that biopsy comes back with a definitive positive for SCC diagnosis from the pathologist your doc (and you) should NOT be jumping to conclusions. Ive seen incidents where everyone was certain it was a recurrence and it was just scar tissue on that path report. OCF had a set of photos where we could browse thru them and I always tried to guess which ones were cancerous and which ones were not. Guess what? Its nearly impossible to know what is and what isnt cancer by visually looking at something. I am not trying to give false hope but I want you to begin immediately to consider not every doctor knows everything. One of our OCF sayings is.... "Its NOT cancer until the biopsy says it is."

Before just going with anything that the doc offers go for a second opinion.... at a CCC!!! For this do NOT delay!!! I highly recommend Sloan Kettering, MD Anderson, Johns Hopkins, or Vanderbilt are all excellent choices with the first 2 mentioned being the top 2 CCCs in the US. If you were already treated at one of those places, find another one to go to ASAP. You can not waste time doctor shopping or hiding in bed pulling the covers over your head. I do not want to sound harsh or insensitive.... I really do completely understand what you are going thru but you MUST get up and face this head on instead of allowing it to devastate you. Today is pretty much over for those of us on the east coast of the US, whats done is done and use this day as your day of "mourning". Your next move must be to put away those fears and "what ifs" and start being your own strongest cheerleader and advocate. Stand up and get the ball rolling on taking positive steps to analyze your options and make yourself the squeaky wheel until you get the attention and options you deserve. The top docs at CCCs arent going to take a doctors hunch as a cancer recurrence diagnosis, they will need to see the pathologists report saying you do actually have a recurrence. Since you just went thru rads, if this truly is a recurrence, surgery is what you most likely are looking at. The top CCCs have EXCELLENT surgeons. Some are able to do things other smaller regional facilities can only dream of while using the latest, state of the art equipment those smaller regional facilities doctors may have only read about. Over the years, Ive had the opportunity to meet a few of the "top docs" and if I ever got sick again I would immediately get my butt moving and run as fast as I could right to one of the top docs to give me the very best chance of eliminating the cancer permanently.

I know how you are feeling, Ive been thru it myself... twice! How I detest seeing any of our members go thru this!!! Its not fair and it certainly is NOT easy but for your own sanity you must take a deep breath and take a step back to view the entire picture to think logically and take your health and possible recurrence step by step. Avoid the "what if" thinking like the plague so you wont become paralyzed by fear of the unknown. If fear takes hold of you, physically get up and "change the channel" by going immediately to do something that engages your mind and is positive. I used to clean out my closets and by the time I went to get treated boy did I have the cleanest and most organized closets!

We're here to lean on if you need us. We are in your corner all pulling for you. As soon as possible get moving on calling the CCCs for at least a second opinion. Make a goal to make positive progress every single day. Get that game plan started, get your game face on and start becoming your own strongest advocate.


(((((HUGS)))))


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
Re: Cancer is back...or never went away?! [Re: Kristen S] #196932
08-16-2018 06:08 PM
08-16-2018 06:08 PM
Joined: Mar 2018
Posts: 41
Maine
V
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)
V

Joined: Mar 2018
Posts: 41
Maine
Kristen, I'm so sorry! I hope your meeting with the medical oncologists gives you more information and some options.


My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
Re: Cancer is back...or never went away?! [Re: Kristen S] #197049
08-28-2018 08:38 AM
08-28-2018 08:38 AM
Joined: Apr 2018
Posts: 46
D
DeniseG Offline
Contributing Member (25+ posts)
DeniseG  Offline
Contributing Member (25+ posts)
D

Joined: Apr 2018
Posts: 46
Kristen, I am so sorry to hear this! Please let us know how you are doing. We are all pulling for you!


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use

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