Day +708: What I’ve run through my body, what I’ve run through my mind …

“My breath’s the only rhythm — and the tempo is my time
My enemy is hopelessness — my ally honest doubt
The answer is a question that I never will find out”

11/7/12: Some of you have asked the understandable question that we contemplated ourselves, even as we awaited the pathology results: If the lymph nodes are not cancerous, why did you have the neck dissection? Wasn’t it unnecessary surgery? That depends on your definition of necessary. I’ll do my best to explain the situation as I understand it, going all the way back to the original diagnosis.

Diagnosis

The initial diagnosis of cancer resulted from a biopsy taken from a one centimeter lesion on the left base of my tongue. This biopsy showed squamous cell carcinoma (SCC) with presence of the human papilloma virus (HPV+), moderately differentiated (medium growth rate), and invasive (in the deeper epithelial tissue as well as on the surface). This diagnosis was confirmed independently by different pathologists from different facilities using the actual slides. Because this is a biological examination on a cellular level, a misdiagnosis is unlikely.

The next step was a PET/CT (positron emission tomography/computed tomography) scan to determine if the cancer had spread. Unlike tissue pathology, the PET/CT is a nuclear imaging tool that shows different levels of metabolic activity throughout the body after injecting a combination of a radioactive isotope and glucose. Malignant tumors are very metabolic and rapidly absorb the glucose. A specially trained radiologist interprets areas with elevated uptake values or “hot spots” and decides if they’re indicative of cancer or some other anomalies. This is a combination of art and science but when augmented with other clinical data as well as known progression paths for some cancers, it is quite accurate – about 87% for head and neck cancers, and is the best non-invasive diagnostic tool currently available. Still, there can be “false negatives” where cancer is present but not detected or “false positives” where the hot spots are caused by other types of inflammation. Obviously, a false negative is more dangerous.

In my case, the PET scan showed increased metabolic activity on my tongue base and in lymph nodes on both sides of my neck, consistent with the usual “drainage” paths of base-of-tongue SCC. Based on studies, the metatastic path of this type of cancer is quite predictable. There was no evidence of cancer elsewhere in my body. My PET scan was also interpreted independently by multiple radiologists at multiple institutions.

In addition to my biopsy and PET/CT scan, I also had an MRI (magnetic resonance imaging) scan with contrast to verify the results, and I was physically examined with a scope on four separate occasions by three individual specialists plus a multidisciplinary team of medical oncologists, radiation oncologists, surgeons, speech pathologists, and medical students.

Based on all of this information, I was diagnosed as T1N2cM0, Stage IV SCC HPV+, where T1 means a primary tumor of < 2 cm, N2c means lymph node metastases on both sides of my neck, and M0 means no other metastases evident. If the suspected lymph node involvment had been only on the same side as the primary tumor, it would have been classified as Stage II instead of Stage IV. Stage III classifications are reserved for larger tumors.

Treatment

At most top cancer centers, including Johns Hopkins, the currently preferred treatment for this diagnosis is radiation plus chemotherapy with a platinum based agent, and no surgery. HPV+ cancers respond well to this protocol and have a high cure rate. In addition, base of tongue surgery has a high potential for impacting speech and swallowing functions, both huge quality of life issues.

However, being the medical “wonder” that I am, the doctors considered my prior MDS and bone marrow transplant as part of the equation. Chemotherapy and radiation are both carcinogenic in themselves and can cause MDS or other cancers. Ordinarily, this risk is far outweighed by the need to eliminate the current cancer as quickly and completely as possible. But I’m already at high risk for MDS relapse, plus radiation or chemotherapy could exacerbate my existing chronic graft-versus-host disease. Thus, my team wanted to avoid these therapies if at all possible.

Fortunately, my primary tumor was small and located completely to the left of the center line of my tongue. This made me an excellent candidate for TORS (transoral robotic surgery) with minimal functional impact. Robotic surgery was approved for otolaryngeal cancers only about 4 years ago, so I’m very lucky to have had this option available.

My TORS surgery was successful with clear margins and no evidence of residual cancer. Great news!

The “hot” spots on my lymph nodes, although on both sides, were relatively small, indicating that the cancer probably had been caught early. But the best way to confirm the actual extent of lymph node involvment is via surgical removal, i.e., neck dissection. Needle biopsies are not practical in this case because there are so many lymph nodes and they’re so small. Head and neck cancers have a high incidence of microscopic cancer (dispersed single cells as opposed to clusters or tumors) that could easily be missed with a needle biopsy. Therfore, it’s common practice, particularly for breast or head and neck cancers, to remove numbers of nodes for pathological testing and diagnosis. This provides valuable information for optimizing treatment plans. If no nodes are positive, there’s a very low risk of hidden cancer cells remaining. However, even a single positive node dramatically increases the probability of undetected microscopic cells elsewhere.

For neck dissections, surgeons used to remove nerves and arteries in addition to the lymph nodes, resulting in significant functional impact. Fortunately, they’ve gotten a lot smarter and more precise and are able to excise the nodes while leaving most of the nerves and arteries intact. They’ve also learned that removing levels I and V carry a higher risk for complications and a much lower risk for cancer than the other levels. Therfore, my neck dissection included only levels II-IV and is classified as “selective” instead of the “modified radical” I was expecting. The surgeon does not remove the lymph nodes one at a time but in clusters with surrounding fatty tissue. It is up to the pathologist to separate, count, and test the nodes. The pathologist determines if there is any cancer evident within each node and also looks for capsular leakage that indicates the cancer has spread from the capsule enclosing the node into the surrounding tissue. The results are used to decide if further radiation and/or chemotherapy is recommended.

According to pathology, I had a total of 92 lymph nodes removed – 51 on my right side and 41 on my left side. Although there was no cancer detected in any of them, there was inflammation termed as “granulomatous lymphadenitis” which was further tested for fungal (GMS) and acid fast (AFB) organisms with negative results. No cancer is great news! I need to ask my doctor if I should pursue the cause of the inflammation since it is currently unknown. She believes it could be related to my graft-versus-host disease. I’ll discuss this with my transplant doctor.

So, based on pathology from the surgeries, my revised diagnosis is T1N0M0, Stage I (small tumor, no metastases).

I should find out tomorrow if radiation treatment is still recommended. I’m hoping it won’t be but will update this post as soon as I know. Update 11/8/12: I just got great news from my surgeon. The tumor board reviewed my case again this morning and are all in agreement that I do not need radiation. I’m to have a follow-up MRI with contrast in 2-1/2 months and again 3 months after that to confirm all is well. After that, I’ll be monitored clinically at increasing intervals.

Future Impact of Surgeries

At this point, I honestly don’t know what my long term effects will be from my surgeries. It’s too soon to tell. My doctors are optimistic. My surgery sites are healing very well thus far.

I’m still having some trouble speaking but everyone tells me I don’t sound too bad, and my speech is understandable. Eating is difficult but I’m able to eat normal, solid food as long as I drink plenty of water. I require additional hygiene after meals because the food gets trapped. Both speech and eating will undoubtably improve with time and therapy but I don’t know what my new normal will be.

Scarring should not be too bad on my neck. Dr. G did a great job following the natural creases in my neck and using glue instead of stitches or staples to minimize cosmetic effect.

Before I agreed to the neck dissection, I asked both my hematologist and my surgeon about the consequences of having lymph nodes removed. One worry is lymphedema, where the lymph accumulates locally because of blockage and causes swelling, pain, and risk for infection. This is more common for breast cancer patients who’ve had the lymph nodes removed from under their arms. Although possible with neck dissections, it is less likely, and can be treated with lymphatic massage if caught early. My surgeon said my neck looks fantastic at the moment with less accumulation of fluid than usual for this stage of recovery. It’s still a possibility that I need to monitor.

A larger concern is the potential impact on my immune system. I’ve asked my doctors and searched the web. Although it seems counterintuitive, the doctors said there should be no impact on my immunities – there’s enough redundancy in the lymphatic system with hundreds of nodes to make up the difference. The system will modify the flow to bypass the missing nodes, and the remaining nodes are sufficient to maintain immune function. I sure hope they’re right!

My neck mobility is impaired but that will definitely improve with time and therapy. I still have numbness in my ears and along my jawline. I have some weakness in my left arm that should improve with therapy. Again, I don’t know what to expect as a new norm. I need to be diligent with my physical therapy to prevent future issues with scar tissue. I’ll probably start my formal physical therapy next week, although I’ve been doing my neck and shoulder exercises daily since the day after my dissection.

I’ll write some follow-up posts to track my recovery over the next year.

Conclusion

Based on everything I’ve said here, I definitely believe that surgery was the correct choice, both the TORS and the neck dissection. Without it, the doctors and I had no way of knowing for certain whether the cancer was in my lymph nodes. There was compelling evidence of nodal involvement. The main point of the surgery was to avoid chemotheraphy altogether and hopefully avoid or reduce radiation because of my MDS and transplant. If the doctors had ignored my prior medical history, then I’d have been automatically treated with radiation and chemotherapy without surgery, based on my SCC HPV+ diagnosis, putting me at much greater risk for MDS relapse or graft-versus-host complications. Also, in cases of HPV negative or where head and neck tumors are larger or in locations other than base of tongue, it is not uncommon to do surgery on the primary and use neck dissection as a diagnostic tool to determine if additional treatments are advisable. My treatment was still standard care in that sense.

It’s never a bad thing to be told you don’t have cancer unless, of course, it is a false negative that would cause it to go untreated. There are no guarantees that all the microscopic SCC cells are gone and that I’m not at risk for recurrence. However, my prognosis at this point is excellent!

In closing, I’ll quote another few lines from the tagline, an epic 14:12 long song by Harry Chapin. I’ve given you half the answer but look it up to find the title – the lyrics are worth a read, or better yet, try to listen to the song – it’s quite interesting musically because of the many variations as the song progresses. It’s also very autobiographical and ironic on his part.

“And as I wander with my music through the jungles of despair
My kid will learn guitar and find his street corner somewhere
There he’ll make the silence listen to the dream behind the voice
And show his minstrel Hamlet daddy that there only was one choice”

p.s. Please let me know if you have questions or if I’ve inadvertently provided any misinformation!

7 Comments:

  1. Didn’t Kasparov use T1N2cM0 to checkmate Big Blue on his 2nd game?

  2. WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!WOW!!!!!!

  3. That’s great news!

  4. What a nice, informative, great post!!!!

    But most of what….WHAT GREAT NEWS!!!!!!!!!

    So happy for you!!!!!!!!!!!!!!!!!!!

  5. Things are sounding positive. I’m so glad to “hear” that.

  6. This is such an informative post and the good news update is just the icing on the cake.
    Thanks so much for explaining the details behind the decisions, I’m sure you will help many people ask more questions in the future when facing their own challenges.
    But for now we’ll just celebrate with you and may the days ahead become easier.
    Much love 🙂

  7. Karen, the magnificence of your +708 post penetrates to my core. Its at once erudite, honest, dispassionate, and poetic. It’s a bridge that connects you to all of us and all of us to each other. And best of all its good news. What a warrior you are. Guy

Leave a Reply

Your email address will not be published. Required fields are marked *