Hi All,

From my readings of medical articles, extracapsular spread (i.e. cancer that has permeated the lymph node and invaded surrounding tissue) is major pronostic factor--however, I haven't not seen much discussion on ECS in these forums.

Fortunately, I was negative for ECS--and my treatment plan did not include chemotherapy. I had one positive node (3.2 cm).

I'm wondering if chemo is regularly administered with or without evidence of ECS? I understand that a lot of other variables (size of tumor, number of positive nodes, etc)come into play with the treatment plan.

Regards,

Oscar


Stage IVa SCCA, Rt Tonsil, neck dissection, 33x IMRT, One positive node (3.2 cm), no ECS.

Oscar,
There was no sign of Extrapsular spread with my metastatic tumor either. I had both Stanford and UCSF check because I wanted to know before I decided on a final treatment plan.

Both cisplatin and IMRT were part of my treatment. It is my understanding that cisplatin is regularly administered with the IMRT in order to enhance the effects of the IMRT. Stanford gave me a choice of the doing ciplatin with IMRT or I could add inductive chemo at the start if I wanted to "hit it with all guns." I brought up the subject of this additional "firepower" after doing some research and my Oncologist told me off the record that he would personally make the choice to include inductive chemo. The official Stanford recommendation was cisplatin coupled with IMRT. The recommendation out of UCSF was IMRT alone.

I really had a choice of three different, although similar, treatment plans; 1.IMRT 2.Ciplatin with IMRT 3.Inductive chemo, then radiation with IMRT. I chose the second most aggressive for three reasons; (1.) Because I wasn't sure that I could get completely through the most aggressive plan. (As it turns out I feel like I made the best decision for me because my kidneys could not handle the Cisplatin very well and I only received 2 of the 3 planned infusions) and (2.) My radiation oncologist is convinced that delaying the start of radiation is a very poor choice with SCC and inductive chemo necessarily delays the start of radiation. (3.) Radiation alone seems to be very effective in treating HPV induced SCC. Unfortunately, there is not enough data driven by real studies to have a clear cut definitive answer that applies in all cases.

I can only speak from what I understand from my own experience in comiing to a treatment decision. If I have misrepresented any facts I am sure that someone more knowledgable on the site will correct me. The bottom line is that I am glad I didn't have ECS and I am grateful for another day.

Oscar,
these are some really good and highly technical questions and I am sure that Brian will join in on this thread, since he is far more knowledgeable than me.

Since I am neither a doctor or clinical researcher I can only give it my best guess, from second hand information that I have gleaned. Possibly, another way of presenting ECS would be a cancer that is "poorly differentiated" or highly invasive, in other words a cancer not "differentiating" (from the root word "different") between tissue types (muscle, lymph, brain, etc.) and even bone.

I believe most treatment plans take this possibility into consideration , especially in advanced stage cancer patients. That is why most of us have multimodality treatment protocols.

Add to your list, the length of time that the tumor has been lurking. Genetic predisposition (this is not to suggest that if someone else in your family had OC that you are more at risk but rather the immune system in general) will also play a role as well as environmental factors.

When I was told my cancer was poorly differentiated I naively thought that was good because it sounded like my cancer didn't have it's act together.

The level of differentiation was the first piece of evidence I researched on the way to becoming my own advocate. The second was the term "focally invasive". Theses are all subcomponents of your staging. See:

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

Differention is also covered here as well and refers to the grading of your tumor.

These terms are critical to understand the exact magnitude of your cancer and what tools should be used to fight it. Since the medical diagnosis is typically of few words, every word has a specific meaning and must be studied one at a time, particularly if you are going to be your own advocate. I remember asking Brian to help me define "focally invasive" back in 2003.

The following site below explains differentiation quite clearly, complete with comparative pathology images:

http://books.google.com/books?id=-sfJeOq731MC&pg=PR30&lpg=PR30&dq=poorly+differentiated+SCC-+definition&source=web&ots=0EScaNO8qm&sig=6pBTbvBTScHMtWw2jETayMRRHOM&hl=en&sa=X&oi=book_result&resnum=3&ct=result#PPR30,M1

Sorry you'll have to copy and paste this to your browser.

Hi Gary,

I didn't make the connection between ECS and tumor grade. I'll have to research this further, as from what I've read I don't recall these being related. What I thought was relative was the size of the lymph node--i.e. that the larger the node the greater the probability of ECS.

Interestingly enough, ECS does not directly figure into the staging--although size (and number) of the lymph node(s) do.

IMO, the staging as it exists is pretty simplistic and may be non-representative (or over-representative) of the patent's condition. It is an approximation, at best. I guess I would have expected the medical community, with its amassed brainpower, to come up with a better system.

Regards,

Oscar


Stage IVa, T1N2a, Rt tonsil, neck dissection, 33x IMRT, no chemo

Interesting words "Extrapsular spread". The way my radiation oncologist explained it to me was " the lymph gland is hard like a lima bean so it's rare but your cancer managed to eat through it" . I'm pretty sure that's what got me from 4a to 4b. The beauty of that conversation was it took place on my two year anniversary of ending treatment. I guess they didn't want me to worry. LOL

Hi Frank,

It's interesting that you got were offered a choice of a treatment plan. In my case, the team only recommended XRT after surgery. I was lined up to talk with the chemo doctor, but they "called off the dogs" after reviewing my case. I didn't argue-- I was quite thankful actually. The IMRT was bad enough!

Regards,

Oscar


Stage IVa, T1N2a, rt tonsil, neck dissection, 33x IMRT, one positive node, no ECS, no chemo

Oscar, for what it is worth my right tonsil SCC was a very small tumor but I had three nodes positive and one with evidence of ECS. I personally believe this spread was the after effect of fine needle asperation (biopsy). No matter at this point but I also had XRT radiation without chemo (8 years ago perhaps chemo was less common anyway)

You say you did not have ECS, mind if I ask why you have this interest?

Robins diagnosis was T1N2Mo.I remember at the time being told by various members of the forum that this was a "good" prognosis type of diagnosis.The primary tumour on the side of his tongue was quite small and was biopsied and removed by laser surgery.The secondary tumour (on the opposite side to his primary which was unusual)was much larger and fine needle biopsied then removed during a bilateral radical neck dissection.67 lymph nodes were removed,and at this time the cancer had not spread to any of them according to the pathology report.The MDT board recommended radiotherapy ,no chemo was ever suggested.The neck dissection healed perfectly and apart from trigeminal neuralgia Rob had little problem.The only obvious sign of his tumour was an inverted egg shaped indentation where the secondary tumour had been.This was to be his nemesis,but why remains a complete mystery.Despite supposed clear margins, six weeks after the end of radiotherapy a pin prick hole appeared in the middle of this indentation.Within a week the pinprick was the size of a golf ball and oozing a fetid discharge,and by the time he was seen again at the hospital the golf ball hole was a tennis ball hole and the tumour could be clearly seen fungating and necrotic.Mri showed invasive recurrence and 4 tumours in his lungs.No treatment was available or offered and three weeks later he was dead with over half of his jaw line gone and a hole from his ear to over the midline of his neck,some two inches wide.

Why? how? all the pathology showed no indication of this outcome,no chemotherapy was ever considered neccessary,margins were clear,no spread or invasion was detected,healing was uneventful.Robs tumour was patently not encapsulated and had clearly eroded the capsule it was contained in (the parotid lymph node),but no one knew and no tests showed this.
Medicine is supposed to be an exact science,but mother nature seems a law unto herself,and their really are no two cases alike.For this reason guidlines are just that,but theres no second guessing cancer is there?