I am a 44 yo white male. I have a rare one. An atypical carcinoid (neuroendocrine tumor)of my thymus.
No symptoms and discovered by accident on 9/3/03 on an xray taken after a freak fall down some stairs. Surgical biopsy and subsequent resection on 11/3/03, included the 5cm x 5cm x 4cm tumor, the upper lobe of my left lung, a portion of the pericardium, remainder of my Thymus gland, and several lymph nodes and fatty tissue. No malignancy detected in anything removed other than the tumor itself and one of the five lymph nodes.
Excerpts from surgical pathology report:
Classified as a grade 2 neuroendocrine carcinoma, involving mediastinal fat, thymus, invading into but not through pericardium, and invading into pulmonary adhesion but not involving lung parenchyma. Lymphatic space invasion identified; mediastatic neuroendrocrine carcinoma to one of four mediational lymph nodes. All margins of resection negative. No other tumor identified anywhere. No lung primary identified, and it is likely that this arose primarily in the thymic gland. Multiple subsequent pathologies confirmed this.
Local oncologists as well as consults I had with Dana-Farber in Boston and Dr. Warner in NYC recommend aggressive adjunctive combined therapy of chemo and radiation.
They are first to admit that there is not alot of data supporting chemo and radiation either way, and I have been doing extensive research on my own for the past 3 months. Data is limited to about 200 recorded cases TOTAL, in most of which no post-opertive treatment was performed.
I and my Drs. are convinced that this is particularly nasty cancer, recurring >60% of the time even after “complete” resection. Radiation appears to lower local recurrence, but does nothing for metastisis. Chemo has some limited benefit once metastisized, but no significant data that suggests chemo as a preventative. Overall prognosis is pretty bad, <50% survival rate after 5 years.
I am 15 weeks post-op and feel pretty much normal again – recent CT scan and blood work shows me “clean” for now.
So I now realize I am in a full-fledged war with this thing and I plan on using every weapon in the arsenal. I believe I am starting to understand this enemy and I believe I can beat it.
I’m not yet mentally prepared for the chemo routine, but I can’t wait much longer – currently planning on the combined chemo/radiation to start in April. Also doing some reading on nutritional changes and approaches. I’ve been taking antioxidants for several years now, but I plan on going much further with that approach as well.
I realize this won’t be over quickly, but I will prevail – I’ve got too much to live for.
I’ve been posting on a couple other boards “carcinoid” and “lungnoid” which deal specifically with neuro-endocrine tumors, but up until now have found no one that has carcinoid that is thymic in origin. Glad I bumped into Alan yesterday and found this board.
I know many of you have been fighting for a whole lot longer than the 5 months that I have, but the one piece of advice that I want to leave everyone with is that self-research and knowledge are truly powerful weapons – Drs. don’t have the time to really research for any one patient – I have to have some degree of control over this disease, which by its very nature is uncontrolled. I think that is the weapon that will ultimately lead to my victory.
Joe
joek39@nycap.rr.com
UPDATE JULY 2004
Hello all:
I haven’t posted anything on my condition in awhile, but have been keeping up with everyone else.
I have finished a series of 35 radiation treatments over a 7 week period and have had 4 chemo series out of 6 planned. I have been doing a combination of carboplatin and etoposide (VP16) and have been tolerating it pretty well. No real acute symptoms (mild nausea and hair follicle pain) I am tired all the time, always feel a bit “off” and experience a period of severe fatigue 10-14 days after each chemo series (I’m on a 3-week cycle), so I start to get feeling pretty good just before the next cycle. I’m due for my next one on Monday, and the 6th series(and hopefully last) on August 2nd.
Last CT scan in April was clear, and no plans to do another until September which will give my chest a chance to heal from all the radiation.
I’m going to work every day, and can work a full day most of the time – if not, I come home at lunch and take a nap before dinner – my employer is very understanding. I’m not doing much physical work around the house (which I usually enjoy), and have not touched a golf club since April. I just get tired really quickly doing anything remotely physical – about 1 hour is my max.
I continue to be convinced that my aggressive treatment is the correct one for me, but we all have to make that choice given our individual circumstances.
Your postings (and those on other boards as well) continue to help keep my spirits high.
You are all in my thoughts and prayers.
– Joe
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9/9/04
I work in a manufacturing plant as an engineer and my employer is very flexible on my work schedule. I felt it was important for me to have a reason to get up out of bed every morning, so I planned on working in the mornings, for 4-5 hours and had my chem and radiation treatments set up for early afternoon – most days I would leave work around noon and go home and nap after the treatments. I was (and still am to a certain extent) tired alot and have little stamina, but I pushed myself somewhat during my treatments and now that they are done am getting stronger every day. Some days (usually 1-2 days after a chemo series, I worked less than half-days, and I did call off sick a few times.
The phrenic nerve/lung/breathing issues are real for me also, but my doctors have told me that other muscles in the body help take over for the non-functioning diagraphm – so breathing IS taking place on my bad side, but certainly not as effectively as the other lung. I am just now starting to walk on a treadmill or outside everyday to build myself back up to a reasonable level.
The biggest issue I have right now is a chronic cough issue that happens when I change body position – from standing to sitting, or when I first lie down at night or recline on my sofa – fluid is loosened up and I couph pretty hard fo about 10 minutes until I clear it out – then I’m fine – sleep OK most of the time – doctors blame the radiation on irritating my lung and think it will take a few months to clear up.
I have no “work accomodation” issues with mmy employer, as I am able to do the full scope of my job as an engineer – certainly if I had a more physically demanding job, I would have some issues.
I think you will find that the chemo hits harder from a fatigue standpoint, especially the later treatments – they tend to get progressively tougher. The radiation tended to cause more local issues that cleared up over time – local soreness, difficulty swallowing, as well as this lingering cough.
Best wishes to both of you – you will get through this, take one day, one treatment at a time, and if you can get back to work, in whatever capacity, I would recommend you do so.
– Joe