Recuperation

I need to admit to a bit of foolishness before I do anything else. I fully expected to be back at work on Monday. In fact, I planned on it. How hard could it be to recover from having part of your tongue taken out?

I survived a cord blood transplant, PTLD, a bone marrow transplant, and multiple bouts of graft versus host disease. This was supposed to be a walk in the park comparatively speaking. 

Turns out a partial glossectomy hurts more than you'd imagine. I spent all of Thursday trying to recover from the anesthesia that was administered to me for the procedure. My kind surgeons prescribed hydrocodone in liquid form which takes the edge off of the pain and puts me to sleep. They also prescribed a viscous lidocaine "swish" which is the consistency of partially set gelatin and next to impossible to actually swish around in my mouth with an open wound. I'm supposed to use it to coat my tongue before eating. Since I still can't eat, it's not really a problem.

The combination of not being able to eat and being high on painkillers means I'm out of commission for the next week. When I'm feeling more human, I'll write a bit more about this newest experience with cancer. Until then, know that I'm mending, the cats are keeping me company, and Chris is doing an excellent job of making sure that I take it easy and am behaving.

Recovery

Good news. Ann is out of surgery & Dr. G is very confident she got all the cancer. She characterized it to me as small and less than 2mm below the surface if Ann's tongue. Basically, it was just the remnants of what the punch biopsy from a few weeks ago didn't get.

Ann is recovering from anesthesia and although she's still groggy, she's moving in the right direction. We might not have to stay in Houston tonight.







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OSCC T1N0M0

Its been a long time since I set down to write a blog post and I'll confess I wish it was about a cheerier subject, but "needs must..." as they say.

The purpose of this entry is to cover the medical background of what we are going through, and I'm writing it as me and Ann are waiting for her to get called back into the OR for a partial glossectomy with a possible neck dissection and node removal.  The qualifier "possible" is important here because it relates to the official diagnosis we got yesterday afternoon, which is also the title of this post.

OSCC - Oral Squamous Cell Carcinoma  (of the mobile tongue)
The other numbers are whats called the TNM staging numbers. Tn - Tumor classification number, Nn - Number of Lymph Nodes invaded, and Mn - presence of metatasis from the original cancer site.

Common sense tells you the more of these variables are greater than 0 (zero) the worse off things are.  That being said Ann is a T1N0M0.  Her tumor was about 5 to 6 mm in diameter and less (according to the biopsy from weeks ago) less than 1mm in depth.  In the world of oral cancer any thing less than 2 cm in diameter and less than 4mm in depth is a T1.

Volumetrically Ann's T1 tumor was only 2.25% the size of the largest T1 tumor on the classification scale { d (ann) = 6mm D (ann) = 1mm V (ann) = 28.27 mm^3 vs.  d (max) = 20mm D (max) = 4mm V (max) = 1256.6 mm^3 and so V (ann) / V (max) = (28.27/1256.6 )*100 = 2.25% }.  Which is good news, its quantifiably very small and is statistically less likely to have sent out metastasis anywhere else. T2 tumors are anything between 2cm and 4cm in diameter and can be anything from 1mm to > 4mm in depth.

If you are interested there is a very good journal article about early stage OSCC that can be found here : Early Stage squamous cell of the oral tongue.   I'm going to borrow some figures from the journal article to illustrate what the prognosis is at this moment.

This figure (Fig.2 in the article) shows the percentage of patients with early OSCC with T1 and T2 tumors.  So based on what we know right now the prognosis is very good, and the overall survival rate percentage at 5 years is in the 90's.

Ready?  OK more graphs now - 

This is relapse of the tumor based on the "margin status" during the surgery.  Margins are what the  surgeons call the boundary of  tissue that surround the tumor site in the excised volume of tissue.  What this graph really says is that less people relapse if the cancer is compact enough for it to be cut away.  There is a phenomenon called POI (pattern of invasion) that they look at on a cellular level.  If the POI is diffuse (imagine scattering salt on a table) then its obviously harder to cut it all out.  If its compact (imagine gently pouring salt on a table) then its much easier to remove it all.

What we are hoping for here is that the POI of Ann's newest little problem is such that it can be removed with ease.  There is a suggestion that the earlier the tumor the more compact the POI is.  Its not definitive, but thats what we are hoping for.  I'll circle back around to this later.

last graph -

This shows the recurrence of cancer based on the DOI or Depth of Invasion.  Ann's T1 (1mm DOI) is on the upper - less than 2 mm line.

Now the part I said I would come back to:  There is a caveat with these charts.  The diagnosis of T1N0M0 is locked to a certain extent.  The CT scan Ann had the other day confirmed that there are no involved lymph nodes - but, it was not able to image her mouth clearly.  Too much metal dental work scattered the energy of the CT Scanner and made the image look like a disco ball.

So while Ann is under Dr. G will be doing a through and detailed search with some other scanning methods MDA is testing.  It is possible that the the T number or the M number could change.  Not likely but it is a possibility.  If they do then it will change the course of the planned surgery, and I'll try to explain how.

Ann is right now set to have a partial glossectomy - aka part of her tongue will be removed.  Hopefully not a lot, just the portion that is invaded and a good clean margin around it.  I think they aim for 5mm of clean tissue around the site.

If Dr. G finds anything else, or cant get good margins (because of a poor POI)  then things will be much more serious and Ann will have a Neck Dissection with removal of all the lymph nodes on the left side of her neck.  Do yourself a favor and DO NOT look up pictures of this procedure.  Its disturbing to look at but people do recover successfully.

OK so that is all we know and I hope it has answered some questions that some were having regarding the cancer diagnoses and surgery.  Right now we were scheduled to have surgery at 12:30pm, but have just been told they are running behind because of a difficult operation and we have been "asked" to wait until 2:45pm.  The "asked" part kills me - like we would want to be somewhere else right now.

I'm not proofing this, I'm going to spend time with my sweetheart.

EDIT:  Turns out I had to proof it after all

Surgery

I have been poked, prodded, X-rayed, hooked up to electrodes, scanned, examined, and interrogated.

I have also been cleared for surgery.

Dr. G. will attempt to excise the rest of the cancer from my tongue tomorrow. I'm scheduled to check in to the hospital at 12:30.

I had a CT scan on Friday which didn't show any other areas of cancerous tissue. Unfortunately, I have a lot of metal fillings and crowns in my mouth, which can obstruct the scan. It looks like light tracing off of a mirror ball on the computer image. This means there are areas in my mouth that could not be clearly seen. That means that even though the scan was declared to be clean, there may still be something in my mouth.

Dr. G. will use a few diagnostic tools to look for further areas of dysplasia, as well as good old fashioned visual examination. A camera will be fed down into my throat to allow the team to look for any suspicious areas that may not have been obvious on my scans.

Chris will probably update the blog in the next few days to keep you all posted. In the meantime, I'm feeling well and hopeful that surgery will be all that is needed to deal with this newest flavor of cancer.

Quick update

Chris and I met with genetic counselors Thursday who are attempting to deconstruct my family's medical history and decipher how it relates to my present situation. They're attempting to rule out any undiagnosed syndromes that may have made me more susceptible to squamous cell carcinoma post transplant. This is all in order to better tailor my future treatment.

As they interviewed me, they drew my family tree, extending out to my parents' parents, mom's and dad's siblings and half-siblings, and noted which people related to me also had cancer. Out of those many people, I could only confirm that my dad and I had had cancer. There was a gray area concerning my older brother who died in infancy. My parents wouldn't talk about it, so I only know that he died before he was a year old and that it had something to do with a blood disorder.

After nearly 2 hours of talking, they determined that my cancer is largely environmentally driven and not genetic. This is good news for my brother and nephew.

On a side note, environmentally driven does not mean that the nanny parked me next to a toxic waste dump when I was a tot. It means that my cancers are likely derived from a host of environmental factors that I've been exposed to or exposed myself to. It doesn't mean that they can pinpoint the exact cause of the leukemia or squamous cell cancer, only speculate.

The counselors discussed getting a DNA sample from me so that they could have it analyzed to better customize my treatment. The problem is that I've had a cord blood transplant and a bone marrow transplant. Any blood pulled from me would not actually be representative of me. It would actually be that of my donors. The only way to get my original DNA is to do a skin punch biopsy. Freaky, right? They plan on discussing it with my team of doctors and making a decision next week.

I had a host of tests done today including chest x-rays, an EKG, and a CT scan. I met with the internal medicine doctor whose job was to decide whether I was fit for surgery. He peppered me with what seemed like a thousand questions. When he wasn't satisfied with my answers, he grilled Chris. He listened to my heart and lungs. I have Graft versus Host Disease of the lungs, so theres a lot of scar tissue in my poor lobes. I managed to squeak by and he gave me the green light to proceed.

He also informed me that my thyroid is misbehaving again. I'll have to get it rechecked and then probably have to double my synthroid dose again.

Monday, I'll meet with my transplant team and have more tests done. I'll probably post something Monday night.

An answer for Jenna

Jenna asked if I could elaborate on what could have caused the secondary cancer I'm now facing. I'll do the best I can to answer using what I've been told over the last 5 years of post-transplant follow-ups. Please keep in mind that I have no medical training.

After a bone marrow transplant, survivors are placed on a drug regimen to keep their new immune systems in check. The transplant recipient's organs are in danger of being attacked by the new immune system, when this occurs it's called Graft versus Host disease. It can be a very mild event manifesting in a persistent rash, or it can be life threatening and affect the lungs or liver. I've been on both ends of the spectrum and have suffered from GvHD of the eyes, skin, scalp, liver, lungs, and mouth.

I take tacrolimus, an immunosuppressant, which hobbles my donor's overactive immune system. It's meant to keep my organs safe. Mostly, it works, but when my liver and lungs were under attack, I needed high-dose steroids. Prolonged use of tacrolimus can lead to a host of problems which include secondary cancers. Prolonged use of any medication can lead to problems down the road.

Squamous cell carcinoma is the most common secondary cancer that afflicts bone marrow transplant survivors. As I understand it, the cancer usually manifests on the skin, usually on the face.

Here's where things get shady. Just because you have had a transplant and have taken an immunosuppressant doesn't guarantee that you will develop a secondary cancer.

The presence of Graft versus Host disease of the skin or mouth has been linked to an increased chance of developing skin or oral cancer. I've suffered from both since the first transplant. It comes and it goes with no warning. I've been seeing a dermatologist who specialized in GvHD of the skin. She checks me once a year for skin cancer.

I'm a little over 4 years out from the second transplant. The GvHD affecting the tissues of my mouth has been fairly persistent and is one of the reasons I suspect my transplant doctor of adding the head and neck oncologist to my stable of specialists. It's an if then maybe proposition.

There's no clear-cut reason for why this happened, just a jumble of incidences that added up to a bonus cancer.

Where to begin?

One would think that after over five years of experience in dealing with the many different ways that cancer can turn a person inside out and upside down, that one would become something of a connoisseur of the absurd.  One would be very wrong.

Two weeks ago I realized that the leukoplakia on my tongue was growing. To my alarmed mind the spot looked like it had doubled in size overnight. I called my head/neck oncologist at MDA and reported my concerns. She had me come to Houston the following Tuesday for a look. Easy enough.

A naval doctor pursuing a fellowship in oncology was the first to see me. He pulled my tongue this way and that, felt my lymph nodes, and took down my history. He looked at the pictures of the leukoplakia from six weeks earlier and declared that the spot looked the same.

Dr. G. came in and did an inspection and declared that the spot looked the same.

Are you all sensing the absurdity yet?

Since the spot had not had the good grace to disappear benignly, Dr. G. elected to biopsy it. A piece roughly the size of a pencil eraser* was removed and I was instructed not to eat anything salty, spicy, or crunchy for the next several days.

*The naval doctor showed this very lucky girl the actual specimen after it was taken.

It's been exactly one week and I finally got the call. The spot that looked like nothing to be worried about is squamous cell carcinoma. I have oral cancer.

I will have a CT scan of my head and neck during the first week of December to determine whether the cancer is lurking anywhere else. I'm also scheduled to have exploratory surgery on 12/5. This will involve an endoscopy, further tissue removal from the original site, and possible neck dissection if lymph node involvement is found.

Dear readers, you now know all that I know about the entire absurd affair.

I feel well. I do not feel like I have cancer. Beyond that are feelings of anger and disappointment, which I'm not quite ready to write about. Once I've had a few more days to process, you can rest assured that I'll be back and in rare form.