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My Invasive SCC is back, 1 year post Rads #198200
04-26-2019 10:30 PM
04-26-2019 10:30 PM
Joined: Mar 2019
Posts: 51
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 51
Hello OC friends ,

If you can see my Signature here, you will see that I am not new to having recurrences . My first recurrences ( and the spread to other loco regional areas) occurred within 5 months, of surgery for my Huge primary tumor...

But this new Relapse is 1 year after Radiation treatments!!
It was biopsied in January, when only 6 millimeters. Path report read " Atypical squamous cell proliferation , etc... So, it was left alone.
Then it started Growing Fast! It quickly quadrupled in size. And the Pain!! Cancer pain, you know what I mean ?
I
April 11th, I had Double surgery in the Main OR, for my primary surgeon to remove this painful lump/ tumor-- and secondly for my second surgeon to do a second surgical biopsy of lesion beside vocal cords)-- and then hit it with Laser. It's a lesion in moderate dysplasia ..

So, I was not surprised when the head & neck surgery Nurse called me to give me the Path report results ( before it was released to my Inbox) ---"Invasive squamous cell carcinoma with Deep Positive Margins". For oral tumor.

The mass in Piriform Fossa is still in Moderate dysplasia.

Next day I had a STAT , CT scan to see if it's invaded into Mandible.
Monday, I see my surgeon to go over scan results, plan the next surgery, and hopefully get sutures out.

In my signature, I couldn't fit in that I have a permanent feeding tube ( G tube), and that I haven't had solid food since March 2017.
Also I couldn't fit in that I was born Immune Deficient. Yes, I have a Primary Immune Deficiency disease, which requires me to go in the hospital Every 28 Days to get an infusion of other people's antibodies. Immune Globulin. It's a 4 hour infusion and I've been doing t this for over 30 years now!

We do believe that my immune deficiency plays a major role in my malignancy. Not only is my immune system not Killing my cancer cells-- it's not even detecting it in the first place ... Poor immune surveillance....

Right now, I'm also trying to battle a pneumonia. But I am feeling better, in that front.

I will find out more about next surgery & treatment, in Monday.
This invasive SCC is Relentless in me. I am totally negative for all HPV types....
Never smoked, Do not drink at all....I

Just a relentless cancer...

Crystal

Last edited by Crystal J; 04-26-2019 11:58 PM.

4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheostomy, Mandibullectomy, Parascapular Free Flap reconstruction.
Cachexia - 64-76 lbs
10/2017 Relapse, Recurrence to tongue, Mets to lip, All Positive Margins.
12/2017 Recurrence BOT deep Positive Margins. Re-excision lip, deep PM
2/2018-4/2018 VMAT, a type of IMRT
Re: My Invasive SCC is back, 1 year post Rads [Re: Crystal J] #198234
04-30-2019 08:39 PM
04-30-2019 08:39 PM
Joined: Mar 2019
Posts: 51
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 51
This is my Update-- my upcoming next cancer Tumor surgery is May 14th.
I just had surgery to remove visible tumor on April 11.
Pathology came back: Invasive SCC with deep Positive Margins.

Then I had CT scan, ordered STAT by my surgeon, and it shows enhancing in 2 places of my reconstructed tongue flap. One is the front, where this new tumor Grew Into my Flap. And The other place is under the left side tongue ( Its been sore a limping to be there but I cannot lift it up to see there-- why? Because my reconstructed tongue is Immobile. It became immobile before my reconstruction surgery, though. My massive primary tumor completely damaged the tongue.
My primary tumor was 6.3 Centimeters by 3.1 Centimeters by 2.2 Centimeters Thick! That was my primary, from April 2017.
Since then, this will be my 4th recurrence, or my 3rd local metastasis. Whichever way I look at it, it's bad.

But here is what is Visible Now-- just since my April 11th double surgery ( both my surgeons to 2_ different sites)-- since then this new Invasive tumor has visibly grown around the excision, in my tongue. I showed it to my surgeon yesterday. Yep, I see it.
And this is where the CT scan showed enhancement.

So, he is going to be cutting into my tongue flap, and more painfully than that, he will be going deeper & wider in Floor of mouth where this tumor arose from.

Today I got a new G tube installed. Trying to figure out why I keep losing water from my balloons , in last 2 G tubes.

I also told my surgeon yesterday, that I'm open to more Radiation treatments . I am a year out from my treatments, but with this new tumor, I think my R O might give more, just to this new tumor, perhaps?

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheostomy, Mandibullectomy, Parascapular Free Flap reconstruction.
Cachexia - 64-76 lbs
10/2017 Relapse, Recurrence to tongue, Mets to lip, All Positive Margins.
12/2017 Recurrence BOT deep Positive Margins. Re-excision lip, deep PM
2/2018-4/2018 VMAT, a type of IMRT
Re: My Invasive SCC is back, 1 year post Rads [Re: Crystal J] #198239
05-01-2019 11:31 AM
05-01-2019 11:31 AM
Joined: Mar 2018
Posts: 63
C
CM57 Offline
Supporting Member (50+ posts)
CM57  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2018
Posts: 63
Hi Crystal.
I was just catching up on posts here, I have been off the site for a while.
Sorry to hear about all you have been through lately, you certainly haven't had a nice start to the Spring.
The pneumonia is so scary, I hope the worst of that is over.
Best wishes on your May surgery.
A coworker of my wife, who has had breast cancer, and years of treatment, gave me a little Angel pendant, with the phrase, "This too shall pass".
I didn't realize how profound that was at the time. It seems it's one thing after another, but then you get through that, and move forward. I keep that by my night table so I remember that for all my new issues that come up, and not all related to the cancer.
I had mentioned the cold weather passing a while back, but this winter didn't want to quit. But today should finally be the last fairly cold day in NY, and hopefully going to warm up by you also. I'm sure that would be good for recovering from your pneumonia and the surgery.
Have a great day.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
Re: My Invasive SCC is back, 1 year post Rads [Re: CM57] #198245
05-01-2019 06:45 PM
05-01-2019 06:45 PM
Joined: Mar 2019
Posts: 51
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 51
Thank you, CM57 ! Good to hear from you.
So glad it is warming up, in New York !
It's in the 70-80s here.

I am trying to finish my 3rd course of anribiotics. I have 7 days to go, so, I will finish them before my upcoming surgery.I

I had to cancel 2 GI procedures for this tumor surgery, CM. Both of them are supposed to help my Aspiration problem, which is how I got E. Coli pneumonia in the first place. Yes, I have had a resistant form of E. Coli, in my lungs!!! It is no supposed to be in there!
They think I must have aspirated my stomach contents....
So, after I heal from surgery, however long that takes--- I have to have those 2 GI procedures, and my doctor is also repeating my Modified barium swallow tests it's been a year since I've had those tests.

Tomorrow I see my Prosthedontist, about my Upper...

Yeah, my medical people are also saddened that I can't catch a break, anywhere.... It would be nice to find Remission....?? But not Yet for me.
I may have to do more Radiation, to mop up after surgery.
If it will help, I will do it !! They will have to make me Another mask because it's been a year since wearing my first one.

Fighting in is all I know to do, CM. I can't let this tumor just keep growing-- it is Visible, right now just after the April 11 surgery. It has no intention of stopping .

Neither do i.

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheostomy, Mandibullectomy, Parascapular Free Flap reconstruction.
Cachexia - 64-76 lbs
10/2017 Relapse, Recurrence to tongue, Mets to lip, All Positive Margins.
12/2017 Recurrence BOT deep Positive Margins. Re-excision lip, deep PM
2/2018-4/2018 VMAT, a type of IMRT
Re: My Invasive SCC is back, 1 year post Rads [Re: Crystal J] #198246
05-01-2019 08:17 PM
05-01-2019 08:17 PM
Joined: Mar 2018
Posts: 63
C
CM57 Offline
Supporting Member (50+ posts)
CM57  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2018
Posts: 63
Oh, the mask!
Mine used to press down on the bone on my lower right eye socket.
I tried to put a band-aid under that area, with little help. So I just tried to not think about it.
At the end of the session, it was like heaven when they snapped open that thing.


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
Re: My Invasive SCC is back, 1 year post Rads [Re: CM57] #198247
05-02-2019 03:26 AM
05-02-2019 03:26 AM
Joined: Mar 2019
Posts: 51
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 51
LOL ! Yeah, everybody has stories about their mask!
I did have them cut the eyes out for me , and that helped a lot.

I have long hair, and it would get caught when they bolted me down. One day I bunched up my hair behind my head - of course, the technicians said No, your mask won't even bolt down if you do that...
Mine was so tight, and it shoved my chin up tight to my face, so I wouldn't open my mouth..
Mine was from top of skull down over my shoulders & chest & came to just above my G tube.
It really covered me.

But oddly, CM, over the days I grew to Like it. Why? Because it felt like at last I was Fighting my cancer. I was actively Doing Something that I knew was killing cancer cells.

That's what I want now-- I want some method to Fight with.

I just relaxed on the table... I can't get up from a totally flat position, easily, because of my neck dissection surgery... I can if I roll to the side first, but then I would have rolled off that narrow metal table there in Radiation. So, because I weighed 69 pounds during my treatments-- my technicians would pick me up in both arms, and lift me off the table.
They worried over me, every day!!

I now weigh a whopping 76.5 pounds!

Crystal

Last edited by Crystal J; 05-02-2019 03:29 AM.

4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheostomy, Mandibullectomy, Parascapular Free Flap reconstruction.
Cachexia - 64-76 lbs
10/2017 Relapse, Recurrence to tongue, Mets to lip, All Positive Margins.
12/2017 Recurrence BOT deep Positive Margins. Re-excision lip, deep PM
2/2018-4/2018 VMAT, a type of IMRT

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