Post RPLND, What now?

[deekay]

My son is 22 yrs. old. His survival story started the end of March 2006: speaking as his mother somewhat nightmarish to say the least. I just found this site and am experiencing the post RPLND blues. Sorry this is long. To complicate matters he also has high functioning autism. He had always been very strong and healthy otherwise. He also has a very high pain threshold which was good after the RPLND but not for early diagnosis. His first CT scan revealed a 8-9cm solid mass in the rt side of the retropertoneum extending up to the para-iliac region and in both sides of the groin. His chest xray was clear. His first diagnosis was Burkitts Lymphoma which placed the family in quite of a shock. He had a laprascopic bx done mid April and when the results came back it showed the mass to be nonseminomatous germ cell tumor. In May 06 he had a rt orchiectomy, insertion of bilateral kidney stents as the mass was pressing on the rt. ureter, had a transfusion after that and was then started on the BEP routine while in the hospital 6 days. He received 2 cycles of the BEP and the the Bleo was discontinued due to results of pulmonary function tests and Aarons love for cycling. After the next EP cycle his tumor markers had gone down significantly. But the mass was still 4cm. So the fourth cycle of EP was given and was told the tumor markers did not indicate furthur cancer but he would need a RPLND to remove the residual mass, lymphnodes to prevent reocurrence. He had the bil. RPLND Nov 2006. It was about a 10 hour surgery, his rt kidney(healthy but scar tissue on ureter) was removed, scar tissue also on the vena cava so that was scraped but didn't want to get into a graft. His colon was nicked during surgery and he had to have a flap repair done. He came out of surgery with a central line, peripheral line, NG tube, catheter, and drain. The NG caused him the most suffrage. My husband or I stayed with him around the clock, he was hospitalized 9 days. The area around his umbilicus did not close so he required w-d packing dressing changes for quite a large area. 6 days out of the hospital he developed an ileus and was rehosp. 6 more days. He wasn't able to eat much, was able to drink and sent home in hopes the colon would come around and open. It did the beginning of December.

I guess now, I just want to make sure everything is being done that should be. He just had his tumor markers checked last week with no evidence of cancer return. But he has not had a chest xray. Also his next appt. is May. What is the usual check-up times that most have gone through post RPLND. Maybe I am being overly nervous but May is a long time down the road it seems. Our oncologist unfortunately has become defensive with any questions. Any thoughts are appreciated. His vena cava post surgery has significant narrowing(pencil size opening) and they placed him on Plavix but the Dr. is ignoring our questions about this too.

[Scott]

Wow, have you been through the wringer! I'm glad you found us.

The NCCN guidelines call for a visit, markers, and chest x-ray every 2-3 months for the first two years "after complete response to chemotherapy and/or RPLND." The chest x-ray frequency is "category 2B," meaning there isn't complete consensus about it among those who developed the guidelines.

[deekay]

Thanks for the information, Scott. We are thankful there is no furthur cancer and hope it stays that way. I guess the great thing now is that he is returning to work on Monday. Being able to go back to work means a lot to him.

[Margaret]

All of you have been through so much. My heart goes out to you. One thing that bothered me was that the Dr. was not answering all of your questions. Is there another Dr. you can see? Going through all that and having to deal with a difficult doctor as well just seems unfair. Please keep us posted. Hugs!

Margaret

[dadmo]

deekay:
The follow-up schedule needs to be evaluated but other then that everything seems fine. You should be very proud of yourself, you did a great job. Stay strong, the period after treatment can be very emotionally trying.

[deekay]

I really wish I had known about this site earlier. As I have read through many of the threads and posts, the caring shown through this site and the sharing of information has amazed me. We haven't had the best of luck with Drs. My son has quite a story, I wouldn't believe it myself if I hadn't lived it. Robert, I have a bad habit of calling the intestines the colon. But actually, his small intestines at the junction of the duodeum was accidently nicked. There are so many conflicting stories surrounding that and how it was repaired. His RPLND was done at a very well known huge hospital about an hour from us. We were told prior to the surgery that the mass was close to the kidney and the vena cava and they had no way of telling just how close till they got in there. He said should the vena cava be involved they would have a team standing by for a graft( I must say the day of the surgery they didn't remember that). Not that I would want that anyway. They scraped the mass off of it, the mass was rock hard. We were told the mass encircled the blood vessels of the kidney, so that is why it was removed. With his tumor markers down this was a very hard heartbreaking decision to even have the surgery. His biopsy taken during surgery and reviewed immediately and those sent away did not show any cancer. We were told the kidney was perfectly healthy that was removed. Personally, I do not understand it. Never in a million years did we think a 3cm residual mass would take that kidney or damage the vena cava. His stents had been removed weeks before surgery and he was voiding normally and without infection. We were told by the urological oncologist that he can live a normal life with one kidney and not to look back. The oncologist here told us we would need to watch for UTI and take care of that kidney since he now has only one. He has an appt post RPLND with the oncology urologist in June. Everything else he turned over to the local oncologist. Although, this oncologist is very nice to Aaron, and the chemo given has cured trhe cancer,everything that happened in the course of his cancer started out badly, and her defensiveness is because of it. No fault of Aarons or by us. All medical politics.

[deekay]

I am not trying to be a baby about all this but there really hasn't been anyone I could just vent to. I have been so closed up, I have had a great case of shingles recently. I am usually pretty strong. In the beginning, we were just caught so off guard. My son had just had a physical with his family doctor in Jan 06. He had just started his first job Feb7, 06. The following few weeks, he c/o of vague digestion problems. He would come home from work sit on the couch and lean on his right side and sleep. He then c/o some mild r groin pain. He wasn't eating as usual. My husband and I had attributed it to a new job, maybe a pulled muscle on the rt side. By mid Mar all these symptoms doubled and he had lost 20 lbs and c/o constipation(very very unusual for him). Aaron had never c/o testicular pain, we were not even thinking in that mode. But prior to this, Aaron never c/o of any pain, never ever c/o a headache. So we took him back to the doctor. I tried to explain Aaron's high pain threshold but I do not believe the dr. thought much was wrong. He examined him but not the testicle. He did blood work and ordered a CT of abd and pelvis. He was concerned about the weight loss and thought it might be intestinal or appendics related. Of course, he said "I have to say, always could be cancer." I was upset as we left because I thought the CT should have been ordered stat but a few days later the CT was done. We received a letter in the mail stating his blood work looked good except for a slight elevation in his alkaline phos and sl. decrease in NA. We later learned through the office the Dr. then went on vacation, never alerting anyone to watch for results of the CT. Aarons symptoms were not getting better but he went to work. I knew that when tests were abnormal they are usually reported quicker to the Drs. My husband called the office, the nurse looked up Aarons CT. Left for a few minutes and on return to the phone said for us to take Aaron to the local hospital and he would be a direct admit as it looked like a type of lymphoma. My husband picked our son up and we took him to the hospital. Please know Aaron is on medicaid d/t autism/adhd. He has speech delays but is of normal intelligence. So when you get to the hospital you get the hospital doctors that do not know you at all. This really freaked us all out, his first hospitalization. My husband demanded a Dr. to talk to him prior to admitting him to tell him what was going on. He was told admit him and a doctor would be right up. Actually we were all in shock. He was admitted that day Fri April 7 to the cancer floor at 1p. Several house doctors visited. We were asked about oncologist. We couldn't think so they suggested a man whom I had heard about. The oncologist came up, he examined Aaron, we stepped out of the room per his request so he could check Aaron's private area. He stepped out of the room with actual tears in his eyes. He told us he believed Aaron had a rare type of lymphoma more prevalent in young adults. He told us he would bet the farm on it. He said this was a very aggressive nasty fast growing cancer. He said he doesn't usually handle adults Aaron's age(21) as most of his patients are elderly, he mentioned one of the bigger hospitals but said he would run some tests and do a bx. first and then do a referral. My husband didn't believe it, any of it. I was just recovering from a bx surgery myself and had not had my results yet. An IV was started and he had a lot of blood drawn. My husband requested a second opinion from a doctor who had been taking care of my husbands dad who is a cancer survivor of both prostate and colon cancer but now has MDS. As the day went on , Aaron kept asking for something to eat or drink. He kept being told he didn't have any orders yet. He kept telling us of his pain, no orders yet. As each hour went by nothing. Lots of Drs. and no orders. By 5, the floor received dinner. The nurse came in as Aaron did not have a tray. She said she would check on his diet as she thought he was on a regular diet and get him a tray. Nothing. By 6p, my husband had gone home earlier to get some things and he told me he would bring him something in. He still didn't even have a drink of water. When my husband arrived at 6:30 with something, a nurse came in with a stale sandwich that they had put together and ice water. But my husband walked in and brought him something. He drank and ate about half. I went home for the night as my husband stayed. My husband called me and said the second opionion oncologist had been in. She was quite upset,said the other Dr. shouldn't have told us he had burkitts although she still believed it was a type of lymphoma. She told him we should never have been told that before the biopsy was done. The next day Aaron was told once again he could not have anything to eat or drink as he was going to have an MRI of the brain. This upset Aaron as he is very regimented and he did not have his medication which helped him control outbursts prescribed by a leading autism neurologist. He was getting very restless. Instead the Drs. pooh poohed him being on any medication like he was a drug addict. Once my husband was told by one of the doctors that they would call that neurologist and just see about that. This upset me to no end. At 12:30p he was taken down for an CT scan of his lungs. While there, my husband asked the tech if they would soon do the MRI. She said not to tell but they wouldn't be able to do it that weekend because there was no one there to do it. And even if there was, emergency room would be taken first and he probably still wouldn't get it on the weekend. He was returned and we told the nurse to call one of the Drs. up and we wanted him to have a drink. At 1:30p, I had had enough. Aarons lips were swollen and parched and he was begging for a drink. I had brought myself a canned lemonaid but gave it to him. He drank all of it. Then the house Dr. came in. Said he still couldn't eat or drink because they were going to do an MRI. My husband told them what the xray tech had said. He said well he still can't have anything to drink cause they might do a bx. I had talked to the surgeon myself and he had never talked like that bx. would be this weekend. Talk about disorganzied. I told them, well they cannot do it now because I gave him a can of lemonade. The surgeon later told me he had never intended to do that bx on the weekend. There are many things that went wrong, but these were a few. A urologist came in and told my husband Aaron's rt kidney would need a stint as the mass was pressing on the ureter. He also did an exam. Dx still prob. lymphoma. That evening my husband talked the second opinion Dr. into letting Aaron go home since nothing could be done on the weekend anyway. We could get Aaron prepared and bring him back Monday or do it on an outpatient basis. My husband knew nothing of medical politics. We didn't know at that time, a head nurse was about to be honored with a prestigious award for the care given on her floor,this CA floor. Or that a state of the art cancer center with the help of our second opinion Dr. was in the works and to be opened this spring07. It was never in our intention to hurt anyone just get help for our son. Boy, were we caught in the middle. I told my husband, he did not know anything about medical politics, what all this would cause taking him out of the hospital even with an okay. He knew nothing about medical politics,I did, he just thought he was doing what was best for Aaron. On Monday, as per our discharge orders we were to call several of the Drs. We were brushed off pretty much by all of them. Told by the family physicians office that we had picked our Dr and just stay with them. Then the nurse asked what the dx was, when we said lymphoma she burst out laughing. Yep. had to get a new family dr for sure. We were pretty much deserted except by the second opinion oncologist and the surgeon who had been asked by the second opinion oncologist to do the bx. The surgeon said that he was in the middle of all this but would try to direct us. So as you can tell we have been through a real wringer. From there for about a month it just got worse.

[dadmo]

deekay:
I'm sorry you have had to go through so much. As is often said "you can't make this stuff up".

[Karen]

Welcome deekay, glad you found us but sorry that you needed to! Are you comfortable with your path forward? Have you seen the "experts" list on the

http://tcrc.acor.org/?

[deekay]

I suppose all of this wouldn't have bothered me as much if something would have just been normal. Had someone read the CT scan done prior to Aaron's admission and done an ultrasound too. On the 6th page of the 4/5/06 CT scan of the abdomen and pelvis, the r sided testicular cancer was clearly evident to see. When Aaron was in the hospital the first day, the second opinion oncologist showed my husband page 1 mylar of the scans where the abdominal mass was. She pointed out exactly what he was seeing and what to look for. Everyone missed page 6. Anyway 4/11 Aaron had his laprascopic biopsy with three holes punched. After surgery, we were told as through his experience, this was lymphoma but would wait to see what kind with the bx results. We were told to vs. him in 2 weeks for results. In the mean time, Aaron was having more pain. The second opinion oncologist kept keeping in touch, Aaron was on meds for pain & n&v. He was still dropping weight. I had made an appointment with a new family physician for Aaron but earliest appt. I could get was 5/15. We needed someone to advise, someone who was not biased. My husband would tell her that we really wanted to take him to one of the larger hospitals where there was an expert but she kept saying she would give a referral after the bx. My husband liked the way she seemed genuinely concerned. Her contention was if this were something easily treated by her with success why go a long way to the other hospitals. A couple days before we went to the surgeon for results she called to say that it was a Germ Cell Tumor, primary site was the r testicle. When we went back for final results from the surgeon, he said the mass in the abdomen was a Germ Cell Tumor originating in the R testicle. The surgeon checked him with my husband present and referred us back to the urologist that checked Aaron in the hospital. But that Dr., who was considered the best in the area and whom most Drs. in the area recommend, refused to see Aaron because he was on medicaid. We could see another urologist in his ofc. But the oncologist and the surgeon both talked him into seeing Aaron. What a hassle huh? Aaron hasn't been on our insurance since he was 19. We were never told what stage, tumor markers, as all kept hushed and when we asked, an excuse that they didn't have them yet was made. As long as the tumor markers were high we were not told. Of course, to know it was testicular cancer wasn't good but it increased our hope for survival. The urologist told us that the oncologist would like to get him started on chemo first and then he would have the surgery to remove the r testicle. But by the end of April, he was weak, in a lot of pain, very pale, and loosing more weight. He then started c/o not being able to sit. My husband helped to check him and the rt testicle was greatly enlarged and hard as a rock. We called the urologist and he had the ri orchectomy with insertion of bilateral stents May 3. Within 24 hrs. hgb was down to 7.6 so he had to have a transfusion. The oncologist started the chemo BEP immediately following the tranfusion. This hospitalization was at another hosp. as that is the only area hosp. he could get in at that time(medicaid?). Somedays, I wondered if he would make it, he wondered if he would make it. I have never seen so many iv bags, antibiotics, iron, chemo, reglan, and more. He was happy to go home 6 days later. The urologist called and asked us to pick up the first CT scan from med records at the other hospital and bring it to the follow up visit so he could show it to another Dr. Of course, we looked at them ourselves. Mylar 6, the testicular cancer was evident with a solid mass. My husband told me what to look for as we held it to the light. We took it with us to our new family physician who confirmed our suspicion and was very concerned for Aaron. Aaron didn't have another CT till toward the end of the second cycle of chemo. That is also when a pulmonary function test was ordered. Every question was always downplayed. Esp. now. As testicular cancer is 1 % of all cancers, it is increasing in incidence but education and guideline for Drs. need to be clearly defined. The doctor who did the RPLND was recommended by the oncologist on my insistence that I wanted someone who had done several of these surgeries. She refused to give a referal to the hospital where the testicular cancer expert on the list was as she said she did not like the after care, although I believe this prominent hospital is associated with the new cancer center she is involved in. She didn't want to hear a word about Aarons surgery. She used words such as unfortunate for the r kidney loss and narrowed vena cava. We were told by the surgeon that there wasn't any cancer found. No teratoma ever mentioned after the surgery. The words used before surgery was it could be a teratoma and the only way to know is to go in. My husband mentioned something about Aarons condition being rare as they don't see a lot of them this complex. She said this is not rare, who told you this was rare. My husband told her the Dr. that did the RPLND at the hospital she recommended. She then said she had taken care of thousands of patients with this tumor. So now I am wondering about the aftercare he will receive. To tell her anything will be literally impossible. Yes, we are so happy for Aaron, words cannot describe. I guess afraid things will be let go too long again. Thanks to all that have allowed me to vent and offered your support and suggestions in this thread. Do you think a Dr.(expert) would take Aaron now for surveillance post RPLND? There is only one expert in my state and he was a mentor to the Dr that did the surgery. In fact he was called during the surgery for advice. Yea, the surgery was a train wreck, the Drs. own words describing it to a resident. Can a person go state to state on medicaid?

[Russell's Mom]

keep on it

Hello,
I am Russell's mom, Sharon. Russell just had his RPLND, we are waiting for the final pathology. (7 1/2 hour surgery) A long story short, Russell was 21 when he found his lump, the first practitioner could not feel it, so sent him out the door. The second saw that it grew, sent him to the specialist who told him it was nothing. Two more MDs said his excruciating back pain was muscle strain. Over a year from his first appointment, we are at advanced metastatic stage. Like you, I have not come to complete grips with what to do with the emotion. For now I try to push it into a direction that might be helpful to someone. I believe the flood gates will open some day when it is safe to do so.
For now, I say...keep on it! I had to fight and push to get Russell to a center of expertise. I worked very hard not to become the angry irrational mother so that my demands were met with resonable expectations. Helpful people come out of the woodwork!!! Don't give up. Everyday, I tell the monster that stands by my bed in the morning that I will not spend time with it today. Then up and going, braving the waves of emotion and confusion and each day we make more and more progress toward happy, healthy and strong. I won't give up my time or energy to people and situations that are not helpful, there is not time to spare.
In California, there are many good doctors who see Medi-cal patients. I believe the laws would be the same, but check for sure. If you find a doctor that will accept the care of your son, you can ask for the care to be transfered. Sometimes social workers are helpful, but you may have to do the footwork yourself. Try contacting someone on the list that Karen provided. These people know how to get it going.
Take care, be sure to be Mom through it all, if you don't no one else can! Russell's mom Sharon

[deekay]

Hi Sharon, Anyway, I hope your son Russell receives or received positive pathology news. It is difficult to know something is wrong and no one listens. You would think in that this is the number one cancer of young men, that doing an ultrasound would be logical if any of the symptoms were present. I do understand how the emotion builds up and you have to keep moving forward in a positive way. There is no way I would ever let Aaron know that I have these feelings. He started back to work yesterday and is doing really well. His hair has grown back darker and curly. I am also glad to read on this board the positive experiences others have had after their RPLND and with their post care. Although a RPLND is not pleasant for most it is tolerable esp. if you are given good post care. It does help to renew my faith somewhat in the medical community that good care is out there somewhere. We are going to be looking for another Dr. hopefully expert. Not sure how another Dr would feel about taking someone at this time for surveillance. But surveillance is important for Aaron since he is not able to express verbally that he is having problems or to check himself due to his situation with the autism. Hopefully, he will never have a recurrence and all the worry was for nothing.