Where are we now, what's the big picture and where to go from here?

We had Steve’s followup appointment with Dr. Lowy, the surgeon @ UCSD. Basically, there were no surprises and no real new information. This was extremely good news and left us both heartened and relieved.

Let me start by saying that Steve looks and feels better than he has in years, his appetite is great and he can eat about anything, we go out every day (often for a meal .... some things never change!) and though he's still healing from the surgery, he's doing VERY well and the Dr., and all of us, are very pleased!

Where do we stand now?  A look at the "big picture."
So …. Here’s a recap of information we have so far. This is more medically detailed than we’ve posted here before, and it’s an interesting dilemma to decide how much to post and how much is ToMuchInformation. In an effort to keep you all informed and aware of the "big picture,"  and in order that you understand what Steve is going through and also to give you the background to understand any decisions that he makes about future treatments, we've decided to go with the “more is better” idea for right now and post more details.

What’s the Diagnosis?
Diagnosis on the surgery report is: “pseudomyxoma peritonei from metastatic appendiceal carcinoma.” Stage IVB. An important thing to remember is that, though it is Stage IV, it is VERY slow growing, as compared to other, more aggressive cancers. The doctor said he could have had this for up to 10 years and been symptom free until this Christmas. He’s had physicals and been given a clean bill of health, the last one being in October 09.

What was done in the surgery?
In a previous post I said that they took out a lot of "stuff."  Here's the more detailed version of that.  Ok – so, in the cytoreduction surgery they made a 22” incision from the sternum to the pubic bone, used a rib spreader to spread the lower ribs apart, took out 3 very large tumors basically filling and covering the abdomen (one football sized, one disc shaped like a 14” pizza, and one the size of a couple of softballs,) Steve’s spleen, gall bladder, appendix, 4 inches of the colon near the apendix, the omentem, many smaller-than-a-softball tumors, liters of mucinex tumors, 15 lymph nodes, stripped the lining of the peritonium in numberous places, and scraped numerous sites on various organs where the pseudomyxoma had spread. and that’s the short version …. it was a huge surgery.

What could they NOT do in the surgery?
They could not get it all. The important thing is that the small intestine is basically covered with small, seedlike tumors. They cannot get them off, and they cannot resect (take out) very much of the small intestine. This disease is not expected to invade the small intestine, or any other organ, but what it does do is squeezes it and causes it to harden, until eventually the organ cannot do it’s work. This is usually a slow process and the Dr. said that the intestine still looks fairly good, and he would expect that within a couple of years there might be a bowel obstruction, at which point he expects they can go in and resect a small, obstructed portion of small intestine, leaving the rest still working ok, though still covered with tumors. He said they have done this up to a couple of times on other patients. There could also be other problems unrelated to the small intestine, especially as time goes on, but at this point the small intestine is the major issue.

What new symptom have they already found?
Already we’ve had one of those unexpected symptoms. As I mentioned in an earlier post, they found that the cancer had metastasized into one of the 15 lymph nodes they removed. This rarely happens and was a surprise to all.

What treatment is indicated now?
So, because of the involvement of the small intestine, the disease will never be cured, and it’s now a “managed health issue” similar to living with heart disease, diabetes, etc.

He will be monitored very closely and regularly every 3 months with blood tests and CT scans. The disease can be expected to continue to progress, but slowly, as is typical of this type.

For the pseudomyxoma the surgery was the treatment, and now we wait for further symptoms, like the bowel obstruction, and then treat that. Chemo is not effective for this kind of cancer.

For the cancer that’s spread to the lymph node, they sometimes treat with chemo, and sometimes they don’t. It’s a judgement call.

The emphasis now is on “palliative care” (see wikipedia for a good explanation) which includes all appropriate forms of medical treatment as well as having the goal of improving the quality of life and managing the disease rather than striving to cure it.

So, what are the thoughts right now on whether or not to have the chemo?
At this point Steve has a really good quality of life going on! ☺ no pain from the disease (still has pain from the surgery, but that will and is getting better), is feeling better than he’s felt in years, and the Dr. said he expects this to continue until the next problem shows up. And again, he mentioned a couple of years as a target. At that time he said they can hopefully fix the presenting problem and he can go back to a symptom free life until the next time.

There is no evidence that the cancer has spread outside of that one lymph node, though there is certainly the possibility. If it has spread there is no evidence that chemo will help/stop further spread, though it might.

The chemo would not be effective in any way on the main cancer in his abdomen. That will still be there and continue to progress.

Right now they wouldn’t consider doing chemo until 2 or 3 months out of surgery to give him time to heal. At that point it will be a question of balancing quality of life on one hand and, on the other, aggressive chemo treatment which will greatly and negatively impact his quality of life for considerably more than 6 months. And this without any evidence that it is needed or will be effective. And in any case it won’t change or make better the main problems with his small intestine and the original cancer.

There is no easy answer to this. The Dr. said that if Steve wants chemo, he would gladly give it to him, but he said to really consider the quality of life against an uncertain payoff. (he put it better than that). It will not make better the main, over arching problems of the cancer in his abdomen, but would only POSSIBLY make better a subset problem that MIGHT be there. If at any point the blood work or CT scans showed any indication that chemo might be indicated, then we would certainly re-evaluate the situation.

So, for now, we enjoy each day, enjoy each other, enjoy all of YOU, our friends and family, make plans for summer vacations, begin buying Christmas presents (like that ever happens early!), finish cleaning out the dreaded garage, continue to enjoy and be proud of Joelle, look forward to Jenna and Brian’s move out here, and above all trust, rejoice and give thanks for today and that Steve is feeling so good.

Once again …”I know not what the future holds, but I know who holds the future, and I know He holds our hands.”

Proverbs 3: 5-6 “Trust in the Lord with all your heart, and lean not unto your own understanding. In all your ways acknowledge Him and He will direct your paths.” I Peter 5:7 “Casting all your cares on Him, for He cares for you.” I love these verses. 

So, we're looking forward to spending time with you, our dear family and friends, and to living each day with purpose and even joy.

Once again, thank you beyond words for your continuing support, encouragement, love and prayers. You mean the world to us. It sounds so trite, but it's so true.  ☺

We love you all,
~ Keren