• what's next? CT Scans for life?

    Asked by CPRNA4LF on Friday, January 3, 2014

    what's next? CT Scans for life?

    I'm a little over 2 yrs out and I'm trying to figure out what's next. I'm looking for local support groups and finding none. Anyone know of support groups in the DC Metro area for Kidney Cancer survivors?

    12 Answers from the Community

    12 answers
    • CAS1's Avatar
      CAS1

      Being checked for cancer is the new normal

      over 5 years ago
    • ld_105's Avatar
    • lilymadeline's Avatar
      lilymadeline

      I would join a general support group if you can't find one for your specific cancer, after all cancer is cancer. I've had 3 primaries ( 4 if I include my skin cancers ) and there are so many similarities between them that I have found many things in common with all kinds of cancer patients. And yes you should be getting scans for life if they are taking good care of you. Best wishes and good luck!

      over 5 years ago
    • baridirects' Avatar
      baridirects

      Get in touch with the social work department at your hospital or treatment center - they will know what support groups are available in your area.

      I worked at SAIC in McLean some years back...great area to live and work in!

      Namaste,
      Christine

      over 5 years ago
    • Russ' Avatar
      Russ

      Hi CPRNA4LF,
      I couldn't help but notice your questions. It is difficult to find a group for a specific type of cancer. You can try checking with the American Cancer Society. I myself am a member of Gilda's Club, and a group, (around 15 of us), with the various types of cancers meet every Tuesday night at 6-8 pm. There is no specific topic, but everyone shares their stories, and answer any questions that pop up. You can check with Gilda's Club at www.gildasclub.org to see if there is one in your area. It is an organization founded Gilda Radner's husband and her best friend JoAnna Bull. Gilda Radner died of ovarian cancer, and was one of the original characters from SNL, (Saturday Night Live). She said that she wanted to build a place where people with cancer can go to and have fun. Gilda Radner was all about fun. There are so many activities all week long that are free to all the members, families, and friends. Everything is free including membership. The people who run each activity volunteer their time, such as, foot reflexology, yoga, Zumba, painting, creative writing, cooking, quilting,...and there are other sessions where people meet with those who are facing the loss of a loved one to cancer, a group of people, Family & Friends of those who have a loved one or a friend who are battling cancer. They also have a group of children who have time called Noogieland. Gilda's Club also goes into the local High Schools and have a session for teenagers whose parent is suffering with cancer. There are so many other activities, and it is all free to the members...good luck on your search.
      Russ

      over 5 years ago
    • stanhartke's Avatar
      stanhartke

      I've just celebrated 1 year remission of kidney cancer is December. My urologist did a robotic assisted partial nephrectomy of my right kidney. I've since had two CT scans with contrast. They also do a kidney function test prior to the scan. My urologist will want another CT scan a year from now and then he is willing to call that issue resolved. For me, two years is my benchmark and then I can sleep a little better. I think if I left it up to my oncologist, he would want CT's a lot longer and more frequent. My concern is that medical testing like CT's give you a walloping dose of radiation which can increase your risks of cancer. Many physicians either don't account for this or just don't care. I wouldn't plan on a lifetime of CT's, for sure. Best of luck in life's journey!

      over 5 years ago
    • Mramdiv's Avatar
      Mramdiv

      Hi!
      Fifteen years ago I was diagnosed with kidney cancer. A year later, I had a metastatic lesion in my lung and subsequently had it removed. At that time there was no satisfactory chemo to treat any residual, so I had check ups every three months for quite a while. CT scans were a part of those check ups, and still are. I now have them once a year, and see my oncologist every six months. Those are the particulars. Now for the intangibles. I have lived an active and healthy lifestyle for all of those years and now have two more grandchildren born, saw my children land satisfying jobs, participate in wedding planning of one of my granddaughters, and continue several life-giving friendships. Several of my children and I take a trip to Las Vegas at least once a year, and I have traveled to Texas to visit another one of my children.
      If you tiptoe and peer around corners, you will not enjoy the wonderful life God gave you.
      While having those scans is a frequent reminder of your diagnosis, try not to worry unnecessarily. Yes, I think we all wonder if the next one will reveal more cancer, but let it rest after seeing your doctor for the results. Worrying won't make you feel better; just the opposite. Plan a vacation, go fishing, learn a skill or craft, or develop new friendships. There's a lot of living to do, my friend!

      over 5 years ago
    • meyati's Avatar
      meyati

      I get scanned every spring-see a doctor about every 90 -120 days for routine exams, besides the normal care.

      over 5 years ago
    • CPRNA4LF's Avatar
      CPRNA4LF

      ***UPDATE****
      I'm scheduled for a CT on Thursday with the follow up appt with my oncologist on Monday.
      This weekend I'm going to be doing my best to meditate and pray instead of just being a nervous wreck. I'll post results once I know.

      over 5 years ago
    • meyati's Avatar
      meyati

      Sounds correct. Get a scan and see your oncologist. There's nothing about the scan that's scarey. You just lie still- they have pillows and things to help you stay still, and it doesn't hurt anywhere. If you have contrast, they insert an IV and use whatever they insert. I've had that done 2x without problems. You sort of slide in and out a few times, and then you're finished. Then you see your doctor a few days later, where you talk about the Scan-then he'll talk to you about follow up-next visit or care with him to make sure that you don't fall through the cracks.

      over 5 years ago
    • Mramdiv's Avatar
      Mramdiv

      Good choice! If meditation calms and comforts you, by all means, do it! Keep an open spirit to others' attempts at comforting you also. But maybe the date of your upcoming scan is not important to anyone else but you. It happens. Not because you are not important, but because people forget anything that doesn't pertain directly to them. Meditation is a great way to slow down your breathing, pulse,and racing thoughts. I understand. I've been there too. Once it is all done, you will feel like you have another chance at life. And indeed you do.

      over 5 years ago
    • Susan254's Avatar
      Susan254

      I understand your question. I am an RN so found it difficult to accept my surgeon's suggestion to just monitor smaller tumors with CT scans until he decides to remove them. It's difficult to accept just letting the tumors continue to grow until they get to a certain size. I had a large stage 2 removed robotically and several smaller ones from my left kidney in August, but they also found at least one smaller one in my right kidney the same time. Usually renal cell carcinoma affects only one side or the other, and my surgeon who specializes in kidney cancer, I am told, doesn't seem to telling me everything. My next scan is Dec. 2 with f/u with surgeon on Dec. 5, so I guess I'll find out something soon, because I need to confront him with my need to know everything about what's going on with my body and tell him that I need to make the decisions. Is that fair or am I being unrealistic?

      over 4 years ago

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