Announcement

Collapse
No announcement yet.

Concerns with recent CT scan

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Concerns with recent CT scan

    Hi everyone, I think the last time I visited was early in the year. Aaron had a CT on April 6, 2007 which shows a new 3cm ovoid lesion/mass on the Aorta. Would this be how a recurrence would manifest itself? Anyone know of anything similar? Just to review, Aaron has autism with speech and social delays although he is high functioning. He has a high pain threshold. At 21, he had a CT scan April 5,2006 for r groin pain, 20 lb. weight loss, and constipation. One oncologist thought he had burkitts lymphoma and another oncologist thought lymphoma. Had laproscopic bx mid April 06 & bx came back with Germ Cell Tumor. Diagnosis changed to R testicular cancer.. He had R I/O May4, 2006 with placement bil. kidney stints. He received bld transfusion and was started immediately in hosp. on chemo after I/O for nonseminoma. He received 2 BEP and 2 EP and residual mass was 3.5 cm so bil RPLND was recommended to prevent recurrence. He had his RPLND at Cleveland University Hosp. by their Dir. Urology Oncology. Aaron's treating oncologist(also a cancer survivor) refused referral to Cleveland Clinic based on her own opinions. Nov 1, 2006 had bil RPLND, removal R kidney, scrapping of inferior vena cava leaving it scarred and narrowed, nic to duodenal/sm intestinal junction with flap repair. Ten hour surgery, 9 days hospitalization, home 4 days, back in hosp 6 more days for ileus at the area of the flap repair. Placed on Plavix. Immediate biopsies done during surgery and those sent away did not show any cancer. Was told the kidney itself was healthy. Also, lower incision opened in hosp. with multiple drsg. changes done daily. Reopened and hematoma beginning of March 07.

    My last visit here, I was upset and wondering if he was being seen enough for surveillance as seen Jan 07 and not scheduled again till May 07. Plus our treating oncologist was not receptive to any questions. His tumor markers were normal in Jan. He had not had a CT scan since Oct 9, 2006. Some of you suggested a visit to his GP in between or a change to a listed expert. Aaron is also on medicaid d/t the autism. So major changes in the mediaid system now where you join a managed care insurance plan which has you see certain Drs. in their plan. More headaches. Anyway, Aaron's GP concerned about the Plavix and we are concerned that no cardiovascular Dr. had seen him regarding this. So GP ordered CT scan abd and pelvis to see what was going on. He had this April 6, and GP calls me and says there is a 3cm lesion/mass on his aorta. Not sure what it is, could be lymph node, scarring, pool of blood, cyst or...... so making a referral to a cardiovascular surgeon for eval. I have not called the oncologist, not sure she will be the oncologist come May1 due to when the new managed care plan for medicaid starts. Same goes for the urologist, next visit Jun 07. And really not sure that is a bad thing. They have to accept terms to continue for just 90 days. This medicaid system is just for blind, aged and disabled. So tried to let them just keep him on the straight medicaid(there are exceptions) due to all this but was denied. My insurance has not covered him since he was 19. Any comments or suggestions will be appreciated.
    Last edited by deekay; 04-15-07, 02:25 AM.

  • #2
    Any word on how your doctors plan to evaluate what this mass is? Has it never appeared in previous CT scans? Is a PET scan possible?

    Hang in there, deekay.
    Scott, [email protected]
    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

    Comment


    • #3
      a few thoughts

      I'm sure my words speak to areas already covered, but I would be thinking of some serious case magagement! Look/ask for social workers and as well, there is a lot of new activity around autism. Perhaps there are some support networks that would be of help. As a nurse, I am frequently surprised at the new programs that pop up. Maybe there is something out there that was not there before. Will try to keep my ears open as I go. Take care, Russell's Mom, Sharon
      Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

      Comment


      • #4
        Scott, Aaron has never had a PET so I wasn't sure what it was. But now that I have read about it, that seems like what should be done. Thanks for the information. I have not met the CV surgeon. The CV surgeon is to assess the condition of the inferior vena cava and the continued need for the Plavix. Also to assess the mass which could probably be done by a PET. The lesion/mass on the aorta was not expected. It is very close to where the residual mass was. I have not seen the last 2 CT printed results or been told of previous scarring or mass of the aorta. I am gathering all his CT scans from 3 diff. hosp. to take to the CV surgeon.

        Comment


        • #5
          Russells Mom, Aaron has always been in speech therapy and programs for his autism since he was diagnosed at 4 at Cleveland Clinic. Also, dealt with years of uninformed doctors. I feel I am reliving that part again. He has a job. He has a case manager for the autism but not his newest challenge. He is of normal intelligence and above in some areas. There are very few supports for the adult with autism. Hopefully, with the newest state medicaid, case management will become a part of the medical care. His conversation skills are not in accordance with his intelligence so my husband and I have to be his voice. We explain his medical care so that he can understand it and he makes decisions regarding his care. I also help care for my father in law who is post chemo/radiation for prostate and colon cancer and has MDS and DM. Unfortunately,social workers in this area are just not that helpful.

          Comment


          • #6
            also for medical

            Hi,
            In the hospital that I work in, there are casemanagers to help with all of the complicated procedures, transfers etc., especially when there are special needs involved. Not so much for the special needs, but to help coordinate and communicate with the facilities and to help do the research for you for the most appropriate care. Case managers in the hospital are usually nurses and can help you understand the next steps, transportation, communication with the accepting hospitals etc. Social workers in the hospital are usually an endless source of energy to help you find direction...that is why they are there. Autism may be our of their field, but I can tell you for sure that nurses are very good at finding a way when placed with unusual circumstances. My suggestion, if there is not support in this area in one hospital, tap into the recieving hospital. They should be able to help guide which will free up your time to be with your son. Keep in touch. Sharon
            PS I do know what you mean about uninformed doctors, but you have that one undercontrol already!! You have obviously been very there for your son, that won't go away!
            Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

            Comment


            • #7
              just thinking about you

              Just thinking about you... Sharon
              Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

              Comment


              • #8
                deekay:
                I know this is a site dedicated to testicular cancer but we are a family. If you can think of anything we might be able to help you with please let us know. You son's immediate problem may be tc but I am willing to help insure a better future for him in any way I can. I am a father far more then I am a tc moderator.
                Last edited by dadmo; 04-16-07, 09:14 PM.
                Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                Comment

                Working...
                X