• Next Step

    Asked by dadof3 on Friday, January 23, 2015

    Next Step

    I meet with an oncologist in a few days. Any idea of what he might say? I don't know what will be next in this journey. My surgery called and said 2 of 14 lymph nodes they tested were positive but wouldn't tell me what that meant. Any help would be greatly appreciated. Have a great weekend! Thanks

    9 Answers from the Community

    9 answers
    • CrazyHarry's Avatar
      CrazyHarry

      Not sure what it all means with cancer in the small intestine, but I would highly recommend that you forget about it for now kick back and relax and enjoy your family before they start treating you. Cancer treatment is not nice and you most likely won't feel like being around people for quite a while.

      Plus you will have all the time on the world to worry about things very soon.

      Best wishes on your healing journey.

      about 6 years ago
    • dadof3's Avatar
      dadof3

      Thank you CrazyHarry for your quick response. I am so grateful I found this site. Best wishes to you also!

      about 6 years ago
    • BoiseB's Avatar
      BoiseB

      I have two different cancers esophageal, and uterine. After my esophagectomy 24 lymph nodes were removed. My surgeon indicated that some were cancerous I got the impression that It was the majority. My oncologist opted to do nothing because of my weakened condition. The cancer came back two and a half years later. Esophageal tumors were found in my ovaries, Falopian tubes and uterus. There was also a large uterine tumor that had pierced the lining. 4 lymph nodes were removed one was cancerous. I do not know what cancer was involved. My case went to the Tumor Board. Again due to my weakened condition this time caused by an accident, the Tumor Board decided no further treatment. In February I will be two years NED. I am still recovering from the accident.
      The Lymph System is the Cancer Highway. It is how cancer metastasizes. Therefore, the protocol is ofter to do some Chemo mop up. I certainly wish my Dr. had done a little mop up

      about 6 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi dadof3! Glad you are here with us! CrazyHarry has some good advice. Cancer treatment isn't nice, but its doable and it's curing lots of people! So that's good news!

      I wondered about your surgeon ... it makes me irritated that he told you there was cancer in two nodes and nothing more. Do you like and trust this surgeon or would you be more comfortable with one who was a little more forthcoming? Hopefully, your oncologist will be able and willing to fill you in completely on what's going on in your body.

      I have a couple of words of advice: don't spend a lot of time on the computer looking up life expectancy and so forth. Those stats are mostly outdated. I personally don't pay attention to a doctor's timeframe either (if it is short) because there are LOTS of us here who are way outliving the odds.

      about 6 years ago
    • dadof3's Avatar
      dadof3

      Thank you BoiseB and LiveWithCancer for your response. I thought as you stated BoiseB the lymph system is the cancer highway. Yeah my surgeon removed 5 cancerous tumors instead of just the 2 they thought I had. Then after the pathology report was finished she called me and said 2 lymph nodes where positive for cancer also. I am doctoring at Mayo and I think they are having a hard time with this because my blood and urine tests all came back negative yet they keep finding it. I just keep thinking of more questions to ask my oncologist on Monday.

      Thank you for the kind words. Especially about not spending to much time on the computer. This is very true doing so just adds to the stress. Thank you much!

      about 6 years ago
    • contrail's Avatar
      contrail

      Datrdof3,

      I was diagnosed with caricinoid cancer of the small intestines in May of 2013. I was already considered a stage 4 because the cancer was in my liver and was causing carcinoid syndrome. I was immediately put on octreotide shots (four a day) after my sugery. After two weeks of the octreotide shots, I was put on a long acting shot called Sandostatin (a commercial octreotide), which helped with the side effects of carcinoid syndrome, but does not cure it. Once the carcinoid has metastasized to the liver or the the lymph nodes, it's considered stage 4. Surgery and symptom control are the treatments that have the best result. Chemo doesn't do much for carcinoid.

      There are some great websights for carcinoid. (carcinoid.org and caring for carcinoid.org are two of them). I know you have a million questions. Which Mayo are you going to? If you want to email me privately, let me know and I'll send you my address.

      The one thing I will tell you is that carcinoid cancer is the most convoluted thing I have ever dealt with. It treats everyone differently. I go to a support group every other month, and no one there is dealing with the same kind of symptoms. It's also a rare enough disease that not a lot of doctors know much about it. It gets misdiagnosed constantly. The other thing you should know is that it is a slow growing cancer. There are people in my support group that have been dealing with this thing for 10-15 years or more.

      about 6 years ago
    • Grammyma's Avatar
      Grammyma

      Hi, dadof3. I,too, have carcinoid cancer. Mine had metastasied to my liver before main tumor was found. I have been taking Sandostatin shots for over 10 1/2 years, so your doctor was right about the cancer being slow-growing. I recently had one of the lesions on my liver start to grow and metastasise to the rest of the liver. I had 2 chemo-embolization treatments and all is stable again. The treatments are painless, but you do need time to recover. My initial surgery involved removing the main intestinal tumor and 14 lymph nodes and about 13 inches of small bowel. As I indicated; I am still here and reasonably well. Don't despair - there is hope!!! Please keep in touch and hugs and prayers to you.

      about 6 years ago
    • dadof3's Avatar
      dadof3

      Thank you all for your replies. I had 5 feet of small intestines removed along with 14 lymph nodes, 2 being positive. My doctor says not much to do right now except scans every 6 months. He stated in my situation none of the drugs out there will help slow things down. Something to do with the cancer not producing much hormones currently. He said once/if a tumor forms then they will treat it. I had my surgery on 12/30/14 and have been released to part time work. I get tired so easy. I can usually only put in a few hours a day. How long does it usually take to recover from something like this?? anyone know? Thanks everyone and have a great day!

      about 6 years ago
    • Grammyma's Avatar
      Grammyma

      Hi, dadof3, I have to tell you that it will take quite a while to get over the tiredness. You had quite a lot of surgery done and all your strength is going to help you recover. Try to be patient and not overdo it. You will need to rest as often as you can for awhile. I think the fact that you are able to work even parttime is great. You sound like a strong person and you will get there! Take care of yourself and hang in there. Hugs and prayers to you!

      about 6 years ago

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