Wait and see approach with seminoma??

[smdemom]

My husband had his left testicle removed last week and we got the results today...pure seminoma. CT scans were all clear, markers showed it hasn't spread and pathology shows it has not spread. He has not seen an oncologist, just his urologist who did the surgery. The urologist believes we should not do radiation and just take ct scans every 3 months and keep a look out. Should we consult with an oncologist ourselves? The urologist said that he would call some specialist at Vanderbilt University and get his opinion but I am wondering if anyone on here has anything to add?

[Scott]

Yes, you should talk with an oncologist. Surveillance is a good option for stage I seminoma, as long as you make every single appointment. The Testicular Cancer Resource Center includes recommended surveillance schedules (tumor markers, chest x-rays, abdominal CT scans) at this link.

[rjs]

Just to pile on...Scott is right. Absolutely go see an Oncologist and get their opinion. Frankly, with cancer it is the Oncologist who should make the final treatment recommendation and it is the Oncologist who will take the lead on your follow-ups or further adjuvant treatment.

[dadmo]

The urologist you used may be fantastic but the treatment of cancer is beyond his scope of expertise. Even though I agree with surveillance you should hear it from an oncologist.

[Rover]

I'm not aware if there are any guidlines for who oversees the surveillance. I see a hematology onc, though I've never had chemo, and it has gone very well. My GP, uro and radiation onc all agree that he is the one to order imaging and review the blood work.

Perhaps a seminoma patient should do it through a radiation onc? The uro is primarily a surgeon and as others have said it is doubtful that he would direct the surveillance.

-chris

[Sans rt1]

Congratulations on your husband's good results. When I was going through it all, the whole what doctor question confused the heck out of me. I opted to go the RT route because of my staging (Ib based on size and vascular and lymphatic invasion of the tumor), so I had three doctors (plus the family doctor).

Here is how it all worked out for me. My urologist diagnosed me and performed the surgery, went over pathology and CT results with me and recommended a treatment plan - he also recommended a radiation oncologist and oncologist for me to consult with to decide on a treatment course. He is still performing periodic follow-ups with me for the first year - not just for the TC I have been treated for, but for how I am healing, if I have any hormone problem symptoms, and to check my other one periodically. After 1 year I won't go back to him unless I have some other urology problem.

My radiation oncologist performed my radiation treatment. I had a followup 4 months after ending treatment and that is it - final report and I don't ever see him again.

My main doctor through all of my treatment and follow-up has been my oncologist. He is monitoring me and addressing any concerns or questions I have. I am on a regular follow-up schedule with him (the other doctors including my family doctor get copies of the test results for their files). If I ever have a recurrence (heaven forbid), my oncologist will be the one to manage my care - the other doctors are out of the picture (except for getting copies of reports). Because I had seminoma, I will be having follow-ups with the oncologist for the rest of my life - frequent at first, but later on it will be once a year (see the link in Scott's post)

This is the way it is for me. It took me lots of questions to all of the doctors before I understood their roles - and made sure they agreed with their roles. There is overlap - I question why my urologist wants to see me so much when the oncologist is on a reasonable follow-up schedule. But, I figure if he thinks it important and the insurance will pay - then I will stagger the appointments and get follow ups for the first year a little more often, which is OK by me.

Even if your husband goes on surveillence, he needs to consult with an oncologist - and the oncologist is the one that should manage his follow-ups from here on. He should consult with an radiation oncologist to understand that before finalizing his decision.

I hope this helps. Good luck to you and your husband.

[smdemom]

Thank you all for the replies. I appreciate all the answers and suggestions that I am finding on this site.
I was so confused after seeing the urologist Thursday because my husband and I were told by him that there is no need for us to see an oncologist. He said that he would call a buddy at Vanderbilt University for an opinion and get us that second opinion for free and save us the cost! He told us to do the surveillance with him and leave the oncologist out of this unless there is a recurrence. After all the reading I have done and by the wonderful replies I have received on this site, I am appalled that he would say such a thing to us. Until I read up on this I thought that this might be a perfectly acceptable thing and that me wanting an oncologist on this was just me being overly paranoid the way I tend to be. We will return to the urologist on Thursday to have his staples from the surgery removed and then we will tell him that we are going to an oncologist. That will be the last time we deal with him and will find a new urologist for future urology needs. I am now so worried that this doctor doesn't know what he is talking about and all the good news that I thought we had means nothing now.

[clyde_on]

i was in the same boat ....

I hate to say this but it is true:


MONEY!!!!!!



Think about it you are a cash cow now!!!!

[dadmo]

smdemom:
Don't assume that the urologist is wrong in his diagnosis it's just that the follow-ups and future evaluation should be done by an oncologist.

[smdemom]

I was right...the good news wasn't that good. I guess this new news isn't the worst, but coupled with the fact that I have no faith in him and think he is a quack, it makes me wonder if him saying the ct scans were clear is actually correct. This urologist apparently couldn't read the path report spelled out in front of him. It has spread to the chord/cord (which is it?) a "little bit". I asked what "a little bit" meant and he said that it doesn't really matter because the treatment is all the same. I just want to be informed. Is there a measurement of chord/cord spread that makes it worse than another measurement? When I spoke with him today and asked for the size of the tumor, do you know what he told me it was? "Big". That was his reply. I explained that I preferred to know in cm and I should have said that in my family one cancer cell is considered ENORMOUS! Anyway he told me that the size of the tumor doesn't really matter (it does matter, right?) and then I got pissed and demanded to know it. 6.5cm by 4.5cm by 4.0cm is what he finally told me. He told me that they would get us an appointment with a doctor at Vanderbilt University in Nashville, TN. Does anyone know of any experts in Nashville or Knoxville, TN? He said that his/her name is Dr. Smith but with that only I have no way of looking up any info on this doctor. Also, do they usually wait about 4-6 weeks to start radiation until you are healed from the surgery? That is what this guy says and I don't know what to believe. I know that we need to get an oncologist and start fresh with him. I really believe in knowledge being power and I want to go in having a general idea about what we are dealing with. I appreciate all of you responding to my questions and I am thankful that I have found this site.

[Scott]

I'd assume your urologist means well (and isn't a quack), but I'd definitely request a copy of the pathology report. You're entitled to all the available information. You should talk with a radiation oncologist as soon as you can. The TCRC lists several testicular cancer experts in Tennessee. See this link. Also, I do see a Dr. Smith who looks to be the right person.

(Oh, and it's the spermatic cord.)

[dadmo]

I'm sorry I was wrong about your doctor. Do as Scott said and get copies of everything. Your husbands outlook is still excellent but you are right "every cancer cell counts". They will need to give the cut some time to heal but the sooner you see an oncologist the better and if you can get one off the experts list that would be great.

[Sans rt1]

smdemom - -

I know right after my I/O, I was still kind of in a haze and really did not get all of the things my doctors were telling me. Thank God for my wife, who wrote everything down and asked the right follow-up questions for me. Keep after it, get the information to a qualified oncologist (sounds like that is in the works) and come up with a plan that is based on sound guidance.

Your husband is very fortuante to have you working this for him. You are doing all of the right things.

[smdemom]

Scott, thank you for the links. I appreciate everyone's input. I pray that we will be able to get in to see this oncologist quickly and have our questions answered. In the meantime I have a few for you all...if it has spread to the cord, does this usually indicate that it has spread to the lymph nodes? Does this change the stage from 1 to 2 or does the cord remain part of the testicle and therefore is considered contained? Is it normal to not remove lymph nodes when removing the testicle? This doctor said that they try not to touch the lymph nodes at this point. Also, is there a place that I can get a list of questions that are recommended we ask of an oncologist? I fear that I may drive myself, my husband and all of you crazy before this is over. I am thankful for you all.
~Michelle (my husbands name is Scott and I will try to encourage him to come here and look around)

[djmac]

smdemom:
Don't assume that the urologist is wrong in his diagnosis it's just that the follow-ups and future evaluation should be done by an oncologist.

Hi Dadmo,

I would like to disagree. My uro is the head of urologic/oncology and specializes in prostate cancer. He is a fantastic surgeon, but he is not an oncologist. But so far, everything he has told me has been spot on. He really encourages surveillance candidates to seriously consider surveillance, but puts everything out on the table. The med onc he referred me to wanted to nuke, because apparently her fellow misread my CT and relayed the myth that I had some minor lymphadenopathy. I'm not comfortable with her as the person who will be reading my surveillance scan, but I respect her opinions. My uro, being the head of a department in a Cancer Institute, does surveillance follow-ups for a number of people, but consults with my onco. I'd much rather report to him than to her, but I m glad she's on my team. The rad onc was also someone I was very comfortable with, and who was also comfortable with surveillance for me. So as it stands right now, all of my reports are going to my uro, my med onc, my rad onc, and my other uro who discovered the tumor but who I dis'ed by angrily running out of his office to find a second opinion... and Dr. Sheinfeld at MSKCC, who, hopefully, I'll never have to see in person again . But after my scans, I will be talking to my uro surgeon exclusively, because he is the one I am most comfortable with.

djm