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Weird situation, part 1 of 2 (sorry, very long post)

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  • Weird situation, part 1 of 2 (sorry, very long post)

    Hi all,

    I usually lurk in a forum for a while before posting, to get the "lay of the land" and get as much information as I can from archives before asking questions of my own. However, I'm sure you can understand that time is critical for me right now, and so I apologize in advance for any breaches of forum etiquette.

    My diagnosis is Stage IIA Seminoma, with three enlarged lymph nodes in the retroperitoneum (RP) on the side of my I/O (left). The largest node is 1.4cm. I have gotten a casual opinion from the urologist who did my surgery and four formal opinions from oncologists, two of whom are professors at Harvard Medical School (HMS) and practice at Dana-Farber in the genitourinary cancer center. The opinions seem to me to be inconsistent, so I'll just lay it out as follows.

    The urologist informally said he thought that any lymph node over 1cm in the RP is a cause for concern, but that it would be "borderline" as to whether I could choose surveillance as a treatment. This I later found was not true - every oncologist I've seen said nothing about "borderline".

    The first medical oncologist I saw was not a TC expert, and so he consulted with Dr. Glenn Bubley, who is the director of genitourinary medical oncology at Beth Israel Deaconess in Boston and also a professor at HMS. They both agreed that the standard treatment for my situation is a course of radiation over about 20 treatment days. However, they also said that just recently (last 6 months or so) in genitourinary oncology favor has begun to shift away from radiation toward chemo since the risk of second malignancies is thought to be less with chemo. They offered an alternative treatment for me: 3 cycles of EP. After doing much reading on several reputable web sites (TCRC and NCI, among others), I found that as they said, the standard for stage IIA seminoma is RT. For stage IIB it seems that some may be given the choice of RT or chemo, but in this case chemo is either 3xBEP or 4xEP. I haven't seen 3xEP mentioned as an appropriate treatment for any stage or type of TC. Their reasoning is that since my cancer is in early stage II, they would rather spare me the exposure to Bleomycin or to the fourth cycle of cisplatin.

    My oncologist wanted me to speak with a radiation oncologist before deciding, so I met with one at the same hospital for a consultation. He informed me that the risk for second malignancies from RT is about 1%. That didn't sound too bad to me compared to the complications that can come with chemo, so I started thinking maybe I'll go with the traditional treatment.

    I wanted to get a second opinion, if for no other reason than to set my mind at ease about my decision. I tried to get an appointment with Dr. Kantoff at Dana-Farber, but the earliest available appointment was in about two and a half months. Kantoff is listed on TCRC's experts page as one of four in the Boston area, but one of only two oncologists. I couldn't wait 2.5 months though, so I scheduled appointments with two other doctors in his group - one a radiation oncologist and the other a medical oncologist.

    I met with the radiation person first, and she immediately set my mind at ease by telling me she has treated hundreds of seminoma patients with RT over a period of ten years and not one has had a recurrence or second malignancy! Sounds pretty good to me, where do I sign? She also said that sometimes she likes to hold off on treatment for nodes only slightly larger than normal, ideally for three months from the last CT scan but at least two months. At that time, she would order another CT scan and see whether the node had grown, shrunk or remained the same. If it had shrunk she might suggest surveillance as a treatment option. If not, she would go ahead with RT. She justified this by saying

    1) sometimes lymph nodes may become inflamed from the I/O surgery,
    2) my CT scan was three days after the I/O, so she said it's possible that it could just be inflammation (God knows there were some, ahem, outside parts in the general area that were still inflamed at that point),
    3) she has seen this in seminoma patients with as large as 1.2 cm nodes
    4) measuring nodes from the CT scan is imprecise enough that the 1.2 cm node in that patient could very well have been the same size as or even larger than my 1.4cm node, and
    5) seminoma is slow growing and so waiting a few months is very unlikely to affect the outcome of treatment

    After discussing it a bit more, we decided that I would get a CT scan about two months from the previous one, and the results of that would determine the next course of action. She said if she had to pull a number out of the air she would guess my chances for this "going away" by then to be about 50-50. I left her office in pretty good spirits, as you can probably imagine.

    Two days later I had what I thought would be my third and final "second opinion", with a medical oncologist in the same group. After carefully reviewing my CT scans with a radiologist, she thought there was no question that I was at stage II, due to the location, number and pattern of lymph nodes involved. It turns out that the radiation oncologist I saw two days earlier had not been able to view the CT scans because of a computer problem, and she was going by the report written by the radiologist (at a smaller, non-cancer-specific hospital) who originally interpreted the CT scan. The second oncologist felt pretty sure than the first oncologist would change her opinion if she had been able to view the results herself, so they planned to meet between themselves that afternoon to go over the CT scans and come to agreement. Later that day I got a call from the first oncologist saying that now that she had a chance to look at the CT scans, she agreed with the other doctor in that there would likely be no benefit in waiting a month. OK, spirits not so good at this point.

    (continued in "Weird situation, part 2 of 2")

  • #2
    Weird situation, part 2 of 2

    (continued from "Weird situation, part 1 of 2")

    Well, so what did they think of the three cycles of EP for a treatment? Both said no, that ain't gonna work. They said you can have RT as recommended for your case, or you can have 3 cycles of BEP or 4 cycles of EP if you are concerned about second malignancies from the radiation. So I asked can you quantify the risk of a second cancer with the radiation? The radiation oncologist, during our meeting two days earlier, said that the 1% number is outdated and that the latest research results suggests it's closer to an average of 10% over ten years. This could explain the recent shift in thinking about RT versus chemo for early-stage seminoma. The medical oncologist said you can think of the risk this way: it approximately triples your risk for any given cancer. If you have one or more risk factors for a given cancer, you can expect your chances of getting that cancer to be boosted if you get treated with radiation. So I asked, what about the new equipment that results in more precise dosing and limited field of exposure? It doesn't affect the risk (both actually said this), because the risk is only correlated with the total dosage of radiation you receive, and that hasn't changed over the last 30 years or so. Furthermore, I was under the impression that if you get radiation to the abdomen, you are only at increased risk for getting cancer in the radiation window. Not so, both of the oncologists said. The risk is for any cancer anywhere in your body.

    What are the ramifications for my situation? My grandfather had prostate cancer and it looks like my father is probably going to get it (PSA levels rising but no diagnosis of cancer at this point). Given that, they suggested my chances of getting prostate cancer are about 1 in 6 before getting radiation. The effect of the radiation would triple that, so I could expect a 1 in 2 chance of getting prostate cancer. Lovely. My dad also had colon cancer.

    They also said another thing to think about is how we would treat one of the cancers you are at high risk for (prostate or colon). Both are in the same general area that would be radiated for stage IIA seminoma, and since they place a lifetime limit on how much radiation (both global and local) a person can get, radiation could very well be out of the question depending on the location and stage of the second cancer at the time of diagnosis. OK, how about surgery for the second cancer? The problem is that radiation leaves permanent scarring of the tissue in the radiation window, making it more difficult for a surgeon to make clean cuts in this tissue. So surgery would be possible but the chances for successful surgery would likely be decreased from the effects of the radiation.

    Because of this, both the medical oncologist and the radiation oncologist at Dana-Farber/Harvard suggested that I choose chemo, even though radiation is the standard for stage IIA seminoma, and both said I should choose between 3xBEP or 4xEP. The medical oncologist went further to suggest that I would be at risk for fewer serious long-term complications if I chose the 3xBEP, since the fourth cycle of cisplatin in particular has been shown to be associated with a dramatic increase in risk of long-term problems (I'll have to check my notes for the problems she mentioned, can't remember right now). She felt that the bleomycin's primary risk of lung damage would be small for me since I am 36 and have never smoked, but using bleo would be contingent upon the results of a lung function test that Dana-Farber would run on me prior to starting BEP. They apparently don't use bleo unless absolutely necessary on TC patients aged 50 or over, or who have smoked, or who don't do well on the lung function test. The medical oncologist went on to say that she has been treating TC patients for 16 years and that she hasn't seen a single case of bleomycin toxicity in the last ten years at Dana-Farber (ie, not just her patients), and she thinks it is because of this prescreening that they do now.

    But everything I've read says bleo is a bad dude to be avoided when possible. I'm very much looking forward to any feedback or comments on my situation.

    I would be particularly interested to hear from those who had to choose between 3xBEP and 4xEP - what did you choose and why?

    I would also be interested in hearing from folks who had 3xBEP and had any sort of change in lung function afterward.

    I would also like to hear if others with stage IIA or IIB seminoma were given the choice of RT or chemo, and what you chose and why.

    One final point I'd like to make is in regards to the risk of recurrence in the remaining testicle. The doctors at Dana-Farber estimated that 2 to 4% of patients with TC in one testicle will get it in the other testical later. This is compared to the risk of about 0.4% for the general male population to get TC in the first place. To be quite honest, the prospect of losing the other one terrifies me. In my reading, I came across a study that showed the risk of such recurrence is less with chemo than with radiation, although right now I cannot find the paper and so I don't know the numbers they gave. Does anyone have any thoughts on this? Is there supposed to be a lower or higher risk for this kind of recurrence with seminoma or non-seminoma, and is the risk affected by stage of the original TC?

    Thanks to all who managed to read this far. I'm sorry it turned out to be so long (and kind of stuffy). Any input you can give me will be greatly appreciated.

    Last edited by TSX; 03-19-06, 04:01 PM.


    • #3
      Whew!! The only thing I will comment on is the 3xBEP. My son was treated for embryonal carcinoma from 12/13/04 through 1/28/05. The doctor was concerned about the bleomycin. My son smoked. He was given a PFT for a baseline. By the end of his 3rd cycle he had two bleo treatments left. His PFT showed lung impairment. The doctor felt that the risk to his lungs was greater than the risk from cancer reoccurring so he stopped the bleo. When asked if his lungs would recover, we were given a "shrug". He just had a PFT two weeks ago (14 months post chemo) and his lungs are 100% functioning. Absolutely no damage, completely recovered. He has had no lasting effects from the chemo except for the sterility which we are hoping he will also recover. Good luck making your decision and once you do don't second guess yourself. Just go forward. Dianne
      Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
      Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma


      • #4
        Thanks, Dianne, that's encouraging to hear about your son's lungs returning to normal.

        Did the doctors say he would never be able to scuba dive or have an oxygen mask put on him because of the bleo?



        • #5
          Welcome aboard. Great first & second posts. I understand your concern about future cancers, it's a topic that comes up quite often on this forum. All I will say about that right now is first things first. Your research was wonderful but lets get you cured.
          With your staging I would go for the RT. As you know chemo is not that effective in combating slow growing cancer and you don't have any spread to the lungs. Don't worry about the RPLND it's a rough operation but your in the company of hundres who got through it without too much trouble.
          My son had and still has three lung spots of undetermined origin. When the question of chemo came up I requested the 4EP rather then 3BEP because of our level of physical activity. The doc went with the 4EP to preserve lung function for scuba diving. As I said before I wouldn't worry about the chemo I think your prime for RT.
          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.


          • #6
            Thanks for coming out from lurking in the shadows and into the forum! When was the I/O done, what size tumor, was there invasion of the spermatic cord or lymphovascular invasion (by staining and microscopic evaluation?)

            My husband had a "few lymph nodes noted to be <1cm" on his left side 3 days post op. His radiation onc and Sheinfeld at Sloan weren't concerned and still called him Stage 1, but he is having a CAT done on his first follow up in May to check the nodes just in case it wasn't an imflammatory response. We were also told that the risk of a secondary malignancy is very slight. Chemo was never mentioned but surveillance was. He schedule the zaps as late in the day as possible and din't miss work. Seminoma is so exquisitely sensitive to RT he went with that and will have chemo to fall back on if heaven forbid we see the beast again!

            Lots of information to filter and weigh and lots of conflicting opinions, in the literature and in person... Let us know what you end up deciding.
            Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


            • #7
              Welcome TSX,

              Very informative posts there.. Sounds like you've done your homework and that you'll make the right decision for yourself. I cant really give you any advise on the chemo or RT since i'm not too familiar with it since I only had the I/O and RPLND.

              Sounds like you are taking the right steps to make a decision on a treatment plan. You are in good hands at Dana-Farber also,, thats where I've been treated for over 2 years now =)

              I wish you the best and hope all goes well. Keep us updated.

              Diagnosed 10/03/03
              I/O 10/15/03
              RPLND 1/21/04
              Completed the Boston Marathon 4/19/05
              Completed the Boston Marathon 4/17/06
              Baby Riley born on 3/29/09

              2012 Livestrong Challenge Web page


              • #8
                Thanks for your input, Karen.

                Originally posted by Karen
                Thanks for coming out from lurking in the shadows and into the forum! When was the I/O done, what size tumor, was there invasion of the spermatic cord or lymphovascular invasion (by staining and microscopic evaluation?)
                The I/O was done on 2/18, the tumor was 3.5 x 2.6 x 2.5 cm. The exact wording of the "Final Diagnosis" in the pathology report is "Left Testis: Pure Seminoma, not present at resection margins. Intratubular germ cell neoplasia, extending into rete testis."

                Originally posted by Karen
                We were also told that the risk of a secondary malignancy is very slight.
                That's what the first radiation oncologist told me as well: about 1%.

                The radiation oncologist at Dana-Farber said that number is outdated however, and that the latest studies suggest it is closer to 10% in general and higher if there is a family history of any specific cancers. For instance, my risk for prostate cancer would increase to 50% (ie, a 1 in 2 chance) if I get radiation, according to the oncologists at Dana-Farber. I'll explain in a reply to dadmo's post - I'm still trying to find some numbers for a few things.


                Last edited by TSX; 03-17-06, 06:23 PM.


                • #9
                  Originally posted by Kev332
                  Very informative posts there.. Sounds like you've done your homework and that you'll make the right decision for yourself. I cant really give you any advise on the chemo or RT since i'm not too familiar with it since I only had the I/O and RPLND.

                  Sounds like you are taking the right steps to make a decision on a treatment plan. You are in good hands at Dana-Farber also,, thats where I've been treated for over 2 years now =)
                  Thanks, Kevin. I feel like I've learned a lot over the last four weeks (since my I/O), but still not quite enough to make a good decision on this treatment.

                  Did you have the RPLND at Dana-Farber? If so, who did the surgery? I'm just curious - it's not an option for me since I have seminoma.



                  • #10
                    Hi TSX.

                    A condition like yours is treated with Radiation Therapy.
                    I have never heard of a 50% risk of prostate cancer due to RT. Very rarely kidney damage later on, but it's not something to worry about when compared to TC.
                    3XEP is not in the text books.
                    3xBEP didn't hurt my lungs (and I even used to smoke).
                    Stay with the experts, Dana-Farber comes highly recommended.

                    Best wishes
                    Embryonal carcinoma, stage II,
                    3 x BEP, apr - june 2005


                    • #11
                      I should mention that I got a second opinion on the pathology from Dana-Farber's genitourinary pathologist. He did this from the original slides from the pathology department at the hospital where I had the I/O. His final report was a bit more informative:

                      Immunohistochemistry reviewed at BWH demonstrates the following staining profile in tumor cells:

                      Positive C-Kit
                      Negative - CD30

                      Tumor extends into rete testis
                      No LVI present on the slides received for review.
                      Tumor is confined within tunica albuginea.
                      ITGCN is present.
                      By report, seminoma not present at resection margins.
                      AJCC Stage (6th edition): T1 Nx Mx

                      I don't really know how to interpret this - does it look like there are any red flags in here?

                      From reading the description of the staging definitions on TCRC's page, I think the "N" component is N2 and the "M" component is M0. The blood markers were normal (AFP=2 and beta HCG<2 is what my report said) so the "S" component would be S0. According to the AJCC groupings on TCRC's page, this combination (any pT/Tx, N2, M0, S0) puts me into stage IIB. I've said above I thought I was stage IIA, but I guess not according to AJCC. The doctors' exact wording for my diagnosis has been "non-bulky stage II seminoma".

                      From the NCCN Practice Guidelines in Oncology – v.1.2006, the treatment for stage IIB seminoma is listed as "RT (35-40 Gy)". I cannot find the reference at the moment, but I do recall seeing (somewhere else) that stage IIB seminoma usually has the option of chemo or RT.

                      Can someone define "nonpulmonary visceral metastases" for me? Is this the same as enlarged lymph nodes in the abdomen?

                      Last edited by TSX; 03-17-06, 09:45 PM.


                      • #12
                        Originally posted by Jens
                        A condition like yours is treated with Radiation Therapy.
                        I have never heard of a 50% risk of prostate cancer due to RT.
                        Thanks, Jens.

                        I think it may actually be higher than 50% for me. According to the latest statistics by the American Cancer Society, the risk of prostate cancer for any random male in this country from birth to death (assuming death > 70 years old) is given as 1 in 6.

                        One oncologist at Dana-Farber explained that using RT increases the risk of getting any given cancer by a factor of 3. If she is right, anyone who gets RT for TC has a 1 in 2 chance of getting prostate cancer at some point. For me it would be higher, since there is a history of prostate cancer in my family.

                        As far as treatment with RT goes, according to the radiation oncologist at Dana-Farber although there are only three enlarged lymph nodes, their relatively wide spacing would require a radiation window larger than she is comfortable with. She said she would prefer I get chemo and reserve radiation for local treatment of recurrences if that happens. I definitely took notice when she said this, because of the four oncologists I've spoken with, she is the only one that recommended a treatment outside her specialty.

                        Obviously I've still got some things to work out between my doctors before I can get started on any treatment, but thanks for the comments and feedback, and please - keep it coming.

                        Last edited by TSX; 03-17-06, 07:13 PM.


                        • #13
                          Have you looked through this as far as staging and treatment options?
                          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


                          • #14
                            Originally posted by Karen
                            Have you looked through this as far as staging and treatment options?
                            Karen, yes, that is the "NCCN Practice Guidelines in Oncology" that I mentioned above. It is conflicting with what the Dana-Farber doctors are telling me right now.




                            • #15
                              oops, missed that, sorry. It's hard to question Dana Farber but it does seem to go against everything I read. Can you push for another CAT now or in 2 more weeks? It's the difference between IIa and Ia (and less Gy and less daysof RT). My husband's tumor was smaller, and he had rete testes invasion too. This is bugging the heck out of me...I'm going to pull out my pilo-o-papers and review, but I though the risk was a tad less than 2X for all cancers. If they do radiation what field would they leg or infradiaphragmatic?
                              Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.