Today I took Mom to see Dr. Chang a surgeon in New London, who works out of Fox Valley Surgery. This is what he had to say:
First of all he said that chemo doesn't usually work well to treat neuroendocrine carcinoma, he said it is usually best treated by removing any removalable tumors. His concern is with her liver and spleen. He said radiation doesn't work well to treat these areas, so that is not an option. He said that once she finishes radiation, which would be about the second week in January, she will need a PET scan. A PET scan is a computerized radiographic technique that employs radioactive substances to examine the metabolic activity of various body structures. In PET studies the patient either inhales or is injected with biochemical, such as glucose, carrying radioactive substance that emits positively charged particles, or positrons. When these positrons combine with negatively charged electrons normally found in the cells of the body, gamma rays are emitted. The electronic circuitry and computers of the PET device detect the gamma rays and convent them into color coded images that indicate the intensity of the metabolic activity of the organ involved. The doctor said this test is needed to see if there are any other tumors in the body, this would show more then a CAT scan. If the test only shows the tumors on the spleen and the liver then the plan is to remove the spleen, and burn the tumor on the liver. He said if he would remove the tumor on the liver which is really small because of the location, he would have to remove half the liver. He said he can insert a device and just burn the tumor off. As far as the removal of the spleen goes, I asked about what harm that would do to her, due to what the spleen does for us. Dr. Chang stated that the spleen does release a good bacteria for our body, and by removing it the chances of that person getting sick from not having the spleen is 1 in 250. He also stated that the is vaccinations that can be given for that bacteria. Ok bad news/ worse case scenario, is that if the PET scan shows the cancer is wide spread, then he would not do surgery, and we would go other routes of treatment. He said that although chemo isn't very effective for this kind of cancer, it's still often used to help treat it. Sorry if you are all confused. To sum it up, with Dr. Chang: PET Scan after radiation therapy is complete, we need to pray and keep fingers crossed that it is not wide spread, so he can do surgery to remove this cancerous areas.
Now off to Appleton we went, which we were running behind, due to the doctor being late. We got to radiation at 3:10 and had to wait, mom's treatment was to start at 3:00, good news we got to talk to Dr. Krueger today instead of tomorrow so I asked her the prognosis, and if she could explain this cancer to me, and treatment plan.
Bad News: This is a stubborn cancer, not really curable, doesn't seem to have a primary source really. She said that chemo is not very effective in treating this type of cancer. That she can not give us a prognosis because it's not like other kinds of cancers, it seems to be more of a treat and wait and see type. Meaning she said with hit it with everything they got, and opperate on the tumors that they can, and do chemo sometimes, then continue to monitor, and we wait for when or if another tumor shows up, and do the same, hit it with everything they got. She said she has a handful of patients with this type of cancer, and they are on numerous rounds of treatments. They are not as healthy as Mom is anymore. The doctor told Mom that thsi daily treating of cancer, the team of doctors, seeing different doctors, going to different appointments, that thie will be her new NORM. Mom seemed a little upset about hearing this, I think we all were under the impretion that the tumor was removed from her skull, and that area was being treated with radiation, and all we had left was to worry about the spleen and liver, then once those areas were gone, she would be in a sense cancer free, and go back to her normal life. This is not the case, in fact it is quite opposite, she will forever have to keep fighting her cancer. The doctor could not tell us when her tumors would come back, and who knows where they will be next, or how often they will occur. Mom said "I will do whatever it takes, I will keep fighting, and I have to take it one day at a time, and live life to it's fullest everyday." Also Mom was complaining that her left ear area was reddened and painful and warm, Dr. Krueger put her on Keflex which is an antibiotic, just because of the holidays, and said she didn't want Mom to end up in the ER with a full blown infection in that area, and this would be precautionary.
Mom is so grateful for everyones love and support, she also wants to make sure everyone knows how much she appreciates all the unexpected cards, gifts of money, gift cards, and everyone who has played a little Santa, helping pay some bills, all the wonderful food, the people that take her to Appleton, there are so many people, a lot of people who want to remain anynoymous, which is ok. She said this is really a Merry Christmas with lots of Santa's out there, and wants everyone to know how much everything has helped, and she doesn't have to spend hours worrying about things that she shouldn't woory about. She needs to stay focused on her treatment, she said today is day 10, and only 15 more days to go. She is looking ofrward to a long weekend off without running to the doctor. Please keep the cards coming when you have time, and words of encouragement will help her through this, she looks forward to opening mail, and seeing what someone has to say. Once again I'm speaking for all my family, but we all want to Thank you for everything you have done, and everything you have giving without us even asking, Mom is truly blessed to have such a loving family and friends.
Mom says (Hope you all have a Merry Christmas, and a Happy New Year!!!!! Love, Mom - Peggy)
Love,
Jana
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