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Cancer spread to port site

Tweety1480
Posts: 25
Joined: May 2007

My husband was 4th stage Squamous Cell Carcinoma on base of the tongue.  He had 35 radiation treatments and 7 chemo treatments.  He also got MIRSA from all the burned skin on his neck.  The cancer in his neck was gone, but months later a tumor grew in the port site in his chest.  On Oct. 30, 2013 that was removed.  This is the second known case of this type of cancer moving to the port site, by his radiologist who has been in practice 30 years.  The cancer was already in the blood when they found the cancer, but they didn't know it, even before the treatments began.  So now all we can do is watch and wait for this cancer to show up somewhere else.  I kept a photo journal from the beginning of my husband's journey with this cancer.  I documented all that I could.  I put it all together in a video and put it on youtube.  My husband is not through with this journey yet.  If you want to know more, let me know. This is one of the videos.  There are two that I put together as the journey has been long.  http://www.youtube.com/watch?v=Dz9QSem26mo&feature=c4-overview&list=UUOCIjt-oAAwxLGhuuSP3jJw    The other video is of the cancer in the port site  http://www.youtube.com/watch?v=j0k07d35O5w

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Skiffin16
Posts: 8100
Joined: Sep 2009

Welcome...

I never heard of that before... Thoughts and prayers for your journey to be successful...

John

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CivilMatt
Posts: 3061
Joined: May 2012

Tweety1480,

Very mean business this cancer you mentioned.  I will check video later.

I was also, stage IVa, scc, bot ,1 lymph node & hpv+ (surgery, Erbitux & rads).

I hope you are making positive progress against this monster.

Good thoughts for you,

Matt

Tweety1480
Posts: 25
Joined: May 2007

My husband didn't have the surgery.  They didn't recommend surgery for him.     The neck tissue is hardening.  He recently had surgery on his neck to remove damaged lymph nodes, juglar vein, to remove scar tissue, and a nerve was clipped also.  His voice has changed and it's difficult at times for him to carry on a conversation.  He chokes on breads and potatoes but can eat whatever else he wants, he just can't taste it.  His tastebudes are gone, but the taste for sweets has come back.  He has dry mouth all the time. 

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CivilMatt
Posts: 3061
Joined: May 2012

My lymph node removal was called a “Jugular Vein Dissection”.  The ENT did not know if he could get it out until he was in there, but he got it.

I have difficulty talking for prolong times, my taste buds are compromised, but I can carefully eat and drink anything I want and the taste is still improving.

My water bottle is actually spending more time in the fridg and less time with me, but there is no denying dry mouth.

Matt

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donfoo
Posts: 1314
Joined: Dec 2012

Hi Lucy,

Thanks for sharing the information about cancer at the port site. That is a new one for me.  What was the original diagnosis (stage, nodes, etc.) ? Since he had chemo I guess that did not get all the microscopic cells? Did the doctors speculate how the cancer spread to that area? It seems very unusual.

From the video, the cancer spread there once, was removed, then another grew back in the same spot? When it was removed they did say they had negative margins, right? Remember how much they had? It seems the second tumor there likely grew from left over cells from the first tumor, right?

I'm sure others are interested to hear more about this sort of recurrence even though it is rare.

Don

Tweety1480
Posts: 25
Joined: May 2007

He was IVA stage.  T1 N2C MO lesion on base of tongue, metastasized to lymphnodes in both sides of the neck.  Pathology: Immunostain for P16 strongly and diffusely positive in in situ carcinoma.   Squamous Cell Carcinoma Cancer.  He had 7 chemo treatments with the 35 radiation treatments.  For it to show up in the port site it had to travel through the blood to get there.  The radiologist told us today, he was certain it was the same cancer and certain it is in his blood.  The surgeon and the ENT also say it traveled through the blood and spread from the neck.  The oncologist says for it to have come from the neck it had to have traveled through the blood.  After the port was removed a tumor formed.  The surgeon removed the tumor and when tested there was no clear margin, and before another surgery could be scheduled, the tumor came back.  It grew fast.  The first one formed in three weeks time.  The second one done about the same.  As I wrote earlier, the radiologist who is very experienced in this said it's only the second time in 30 years of practice that he has seen this happen, but it's happened, to "my" husband.

Ladylacy
Posts: 507
Joined: Apr 2012

I have wondered and even asked the doctors this question about squamous cell cancer -- can it spread thru the blood to other parts of the body.  My husband over the years has had several places on his face that proved to be SCC.   Then in 2010 it was found in his laryx which necessitated 35 radiation and 3 chemo treatments then surgery to remove his larynx.  All margins were clear and no spread was found.  Then one year later it was found at the cervical of his esophagus.  Specialist calls it a second primary but still SCC.  More radiation and chemo since surgery was ruled out and only NED for 3-4 months when found that it had returned at the cervical of his esophagus and found in his right lung.  He declined further treatment because only thing offered was chemo and we were told up front it wouldn't cure only prolong and possibly hasten his time.

So I have wondered if the SCC was in his blood to begin with when it was removed from his face or did it get into his blood from the SCC on his face.  I remember talking with a lady while her husband was undergoing radiation as mine at the same time.  She said her husband had been fighting cancer for several years.  He had a spot on his head that turned out to be SCC and when they removed it they found that the cancer was all the way down to his brain.  They were just giving his several radiation treatments on his brain to help because he wanted to keep fighting.  He only received 5 treatments and that was the last I saw of them.

Personally I don't think doctors even begin to know what causes cancer, how it spreads, how to treat it effectively.  It is just a guessing game and many get lucky and survive while others don't. 

Sharon

 

Tweety1480
Posts: 25
Joined: May 2007

By "studied" I mean I read "eveything" I could find on it.  From what I found if it's in your blood this cancer can float around until it finds a vulnerable or traumatized area of the body and then it attaches itself to that area.  The port site was a traumatized and vulnerable area.  It changed colors, like it was bruised and it swelled up.  The doctor removed the port and left the site open to drain.  It healed from the inside out, but never closed up at the opening.  A trumor grew there and it grew fast.  Both the Surgeon and the ENT and now the Radiologist all say it spread there through the blood.  The oncologist said this type of cancer doesn't usually, (normally) spread like this, to the port site but it has.  It comes back in the neck, or spreads to the lungs.  Now, that it's in his blood it can show up anywhere.

 

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PJ47
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It certainly sounds as though both of you have been through a great deal.  It  sounds as though his cancer had moved into his blood stream and the port gave the cancer a damaged area to grow in.  It makes me wonder if the oncologists should be testing  all of us for cancer in the blood prior to treatment.

I wanted to add that SCC can also spread or "seed itself" at PEG or G-tube sites and grow in the stomach.  It occurs in about 10% of patients and depends on the stage of cancer, the timing of the tube surgery, the way the tube was installed, and age and general health.  It can occur due to the endoscope or other instruments picking up cancer cells and depositing them in the mucous membrane of the stomach.  Most of the GI docs minimize this possibility.

My understanding is that once cancer has been found in the blood stream it can spread to the lungs, bones, or other areas of the body.  

The literature discusses the typical path of SCC as going from the oral cavity to the neck(lymph nodes)  and remaining there, but obviously if it is an aggressive SCC then then lymph system  can move it  from those local areas.  

Thank you for letting us know what a rare and unfortunate event happened to your husband.  The more we learn the more we know what questions to ask the medical establishment.  

Any idea how he contracted MRSA on his burns?

 

PJ

 

Tweety1480
Posts: 25
Joined: May 2007

There's no way to say how he contracted the MRSA as he was in different places and dealing with various people daily.  It's been a nightmare.  I say I have "studied" this cancer, by that I mean I have read all I can read about it, and now I'm living it through my husband.  Yes the normal route of transfer from the base of the tongue is to lymphnodes and lungs.  My husband also had a brain tumor which they found when they did a pet scan for the cancer, in the beginning of all this.  It wasn't priorty at the time, the cancer was.  In August  2013 he had that tumor removed but it wasn't cancer. 

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fishmanpa
Posts: 1127
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My thoughts and prayers are with you. 

"T"

Tweety1480
Posts: 25
Joined: May 2007

Has anyone had a problem months after treatment with neck swelling?  My husband had a ct scan done today, of his neck, as his has swollen.  He took some strong antibiotics and steroids and it went down some and then began swelling back up about 3 days before he was finished with the meds.  I have a cd of tghe ct scan.  I got it up on the computer but can't tell anything about it.  Can anyone read a ct scan?

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CivilMatt
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Joined: May 2012

Tweety1480

The edema caused by (radiation) disruption of the lymphatic system does cause swelling of the neck in many of us.

There is massage technics discussed in the Superthread.  Also, insurance often covers a number of therapeutic massages.

Matt

Tweety1480
Posts: 25
Joined: May 2007

Thanks for the info on the edema.

Tweety1480
Posts: 25
Joined: May 2007

The cancer has come back but this time it's in his ear.

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debbiejeanne
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damn, cancer just never stops!  I'm so sorry to hear this and saying a prayer for a good plan of combat.  keep us posted.

God bless you,

dj

Tweety1480
Posts: 25
Joined: May 2007

My husband's bills keep piling up and there's more to come as the cancer is in his blood and will keep popping up.  Right  now he has cancer in his ear and will be having surgery on the 30th.  He has a large mass in his abdomen, and has a surgery consult for Jan. 23.  I'm doing all I can to work with these people and am making 18 payments a month on those bills.  What we can pay is not enough for the hospital and we got two more bills this week, 8000.00.  Don't know how we're going to pay these.  There's no help for us, we don't qualify for any charitable help.  I get overwhlemed at times with trying to deal with all these people who keep calling.  A lot of the calls have stopped, but some continue to call because what we can pay is not enough for them.  My husband can't deal with these people, so I have to.  I'm as responsible for these bills as my husband is according to the law in TN.  I feel so helpless in this. 

Ladylacy
Posts: 507
Joined: Apr 2012

First off I am so sorry to hear about all that you and your husband are going thru.  Does your husband not qualify for Social Security Disability?  As far as you being legal for these bills, I have been told not to sign anything for my husband when it comes to his treatment and/or hospital bills.  Was told the same thing when my mother was alive and living with us.  I don't know what they have in the state of TN for help but I do know that there are charities out there that help.  My DIL's father is on TenCare(?) in TN and he just underwent surgery for kidney cancer. 

When these people call you tell them you are doing all you can and there is nothing more and to stop calling.  Get their names and addresses and send certified return receipt letters to them telling them to stop call you.   By law they have to stop the calling once you send them the letter telling them to stop because if they don't they are open to being sued.   

Sharon

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donfoo
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Not having the details or followed your saga on this topic, typically most if not all hospitals have an office that can discuss and negotiate various arrangements including pretty large discounts. Sometimes it is called social services or the financial office. Certainly not an expert myself but I know others who have a lot more direct experience hopefully will chime in.

 

Good luck,

Don

Tweety1480
Posts: 25
Joined: May 2007

I've dealt with the hospital, settlement offered on one, but we can't come up with it, barely making the large number of payments per month.  Have to go to court today for one hospital bill.  I just don't know what else to do.  I've tried all the charitable orgs and we don't qualify for help.  I've gone all the routes.  I think this is something a lot of people face when in a battle with cancer from what I've seen and read.  It just gets overwhelming at times having to deal with it and trying to figure out a way to do anything about it.  The expenses have been great with this cancer but he's worth it all.  I don't sign anything. 

Tweety1480
Posts: 25
Joined: May 2007

The cancer came back in his ear.  Surgery was done on Friday and cancer removed and a skin graft.  He's doing well with it.  It was the same cancer. 

Tweety1480
Posts: 25
Joined: May 2007

My husband has done well for the past two months, pet scan showed no cancer present but last week he found a large lump under his arm.  He had a needle biopsy done today, doctor went through the breast to do the biopsy.  Certain it's the same cancer. 

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debbiejeanne
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tweety, i'm so sorry to hear this and praying it is NOT cancer.  they can't say it is until the biopsy says it is, so until then we can pray and hope.  Keeping you both in prayer.  please let us know.

God bless you,

dj

Tweety1480
Posts: 25
Joined: May 2007

They have done this before with each biopsy they have done on him previously.    After the tissue is removed, the pathologist is present and tests the tissue right there and then.  The doctor has come out of surgeries on four separate occasions and told me right then that it was squamous cell cancer.  It is possible to do this and it is done. 

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donfoo
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Usually I always belch the old saying "It isnt cancer until proven" but given the history of your husband's unique case and multiple recurrence it seems disingenuous to offer false hope. You are likely correct that this is another recurrent cancer. I pray the treatments can manage and keep the beast contained as best science can offer. Prayers and thoughts, Don

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wmc
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So sorry to hear the news. He,[you] have both been through so much. I will keep you both in my thoughts and payers.

wmc

Tweety1480
Posts: 25
Joined: May 2007

I'm scared.  We find out Wednesday morning what this is.  My husband is not doing well, is having problems with whatever this is.  He's been through so much already. 

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Crazymom
Posts: 300
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So sorry that life is so difficult.  You are being very strong and at some point life will get easier.  My thoughts and prayers are with you.  Ann

Tweety1480
Posts: 25
Joined: May 2007

My husband saw the Oncologist today.  He finally agreed with the other three doctors who said this cancer is floating around in my husband's blood, in his body, looking for a place to attach itself.  The biopsy shows this lump under his arm to be the same cancer as the head and neck cancer, squamous cell.  It will keep coming back in other places.  He plans to do a scan of the body to see if it's anywhere else.   This is as aggressive as the one that came in the port site.  He does not recommend surgery for this.  He is going to try chemo therepy and won't know if it will shrink this cancer until he's had 2 or 3 treatments.  There are no guarantees.  I had such a dread about today, didn't want to hear the doctor tell us these things and he did.  But we will deal with it as it comes, one day at a time.  This oncologist has gone by the book on all of my husband's treatment, he's a good one, however this cancer doesn't go by the book.  What's happened to my husband doesn't happen, but it has.

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debbiejeanne
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i'm so sorry to hear this.  you're so right,  cancer doesn't go by the book.  i'm praying the chemo does the job and your hubby can move on with life.

God bless you,

dj

Tweety1480
Posts: 25
Joined: May 2007

CT scan shows the mass under my husband's arm is as large as an egg and all lymph nodes involved.  The cancer has also spread through the nodes in his chest area.  Again the oncologist said "this is very unusual" how this has all worked in my husband's body.  "Finally" this oncologist said "this is head and neck cancer" spread from the original site of the tongue cancer.  It's all the same thing.  He is trying 3 chemo treatments to see if it will slow this down or shrink the cancer under the arm.  Then he will do another scan to verify whether it has shrunk or not.  There are no guarantees, and no cure for this.  We were told today, this will kill him eventually.  There was no guesstament on timeline. Basically, just trying to slow it down and give him more time.

Tweety1480
Posts: 25
Joined: May 2007

I don't understand how this could happen.  It's never happened before according to what we've been told.  It's very unusual.  I have to ask why now.  I'm wondering if he was too far gone when they found it.  I'm wondering did someone fail him.  Did they do all the right things?  Did someone make a terrible mistake along the way?  Just a lot of questions swirling around in my head.

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debbiejeanne
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tweety, i'm so very sorry to hear all this.  all your questions are good ones but i'm afraid you'll probably never get the answers.  you need to just concentrate on making what ever time you have with him, good time.  i am praying for strength and courage for you both.  i pray you are both able to make some great memories and enjoy each day you are given.  you know, nobody is promised tomorrow so we should all live like today is our last.  i'm really sorry for your news.

God bless you,

dj

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Hondo
Posts: 5881
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I too am very sorry to hear this but don’t give up just because the news is bad. Many of us here have all lived through the nightmare of having recurring cancer in my case 3 times and the last time I was only giving 6 months to a year to live. I am still here 8 years later, do all your research but most of all pray asking God for guidance. I too will keep you and your husband in pray that the chemo will work.

 

God be with you

Tim Hondo  

Tweety1480
Posts: 25
Joined: May 2007

My husband has been back on chemo treatments for a few months now.  The cancer has spread throughout his body through and in the lymphnodes under arm and in the chest and one in neck.  At this point, the cancer is resistant, and the chemo is having no affect on it.  So, at this time, no more chemo will be given.  His fingers and toes are being affected by the treatments also.   All the treatments he's had has affected the muscles in his neck and he has a hard time holding his head up straight.  He still gets around and stays busy if he's able.  He's weak, tires really fast, has had lots of nausea, throwing up, no taste, eats only because he's hungry,  has lost down to 164 lbs from previously being at 234 when this all began two years ago.  He's having a hard time dealing with this as he always thought he would beat it.  The Doctor can't or won't tell us how long he has to live, but  has told us he will die, this cancer will kill him  .  With the chemo having no affect on the cancer, the cancer will keep spreading throughout his body.  He's fought hard to conquor and overcome and he refuses to quit or give up.  He will die standing up.   

 

CivilMatt's picture
CivilMatt
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Tweety,

I am very sorry.

Thoughts & Prayers,

Matt

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donfoo
Posts: 1314
Joined: Dec 2012

It is very sad when one hears that the cancer can not be contained. This is a really rare case but from the onse4t it seems like the cancer he has is very tenacious and will not die or even be kept under control. When conventional standard of care options are exhausted, maybe you can find some experimental trial that he can get into. No matter what, the road ahead holds few proven options. Being a figher I still offer best of luck to you and pray you keep side effects down. Don

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wmc
Posts: 563
Joined: Jan 2014

So sorry to hear this news. I applaud his courage and strength in his fight. May they keep him pain free, God bless.

Bill

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Tweety, I'm so very sorry to hear this.  I'm praying God has a different plan for your husband.  Keeping you both in my prayers.  I hope he isn't in too much pain and able to get around and do what he enjoys.

God bless you,

dj

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