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  • Should he get 2nd opinion

    My 40 year old husband was dx with stage 1b seminoma in July 2019. Had right orchiectomy (bled into his scrotum..had to have a second surgery to clean it out...nightmare). CT was clear after surgery and clear 3 months out (Nov 2019)...however the dr did say his lymph nodes were on the large side of normal...but unchanged from the precious CT. Labs normal except for LDH slightly elevated in Nov. So the dr ordered a PET scan to be performed in 2 months which he did last Fri and we got results back today. PET scan showed a 7 x 12 mm retroperitoneal node. Dr recommends BEP chemo- 3 rounds.

    My questions are 1. Should we go to MD Anderson for a second opinion? We have friends who have been through testicular cancer and think we should because a) they say my husband is really too old to have gotten this...they think its odd...maybe something else going on? And b) location of the node The oncologist says its not operable bc is so close to aorta and spine but vascular docs at MD Anderson take those out? (Our friend had all of his abdominal lymph nodes removed to prevent met)

    2. Seems like this metastasized fast... but what I think is that likely there were cancer cells present the whole time that had already met to the retroperitoneal lymph node (hence why they said stage 1b- bc was in spermatic cord) and just now grew big enough to measure outside of normal. Does that seem right? ***Should he have been offered chemo after surgery instead of surveillance?

    3. What else do we need to be thinking about in terms of the best course of treatment?

    4. How likely is it that the chemo is going to kill all the cancer cells for good? Will some of the cells not respond?

    Thanks for any help/advice!
    Brooke (my husbands name is Courtney)
    Last edited by Court&Speech; 01-23-20, 01:11 AM.

  • #2
    Hello and sorry for you to be here. You were accurate, he did PET scan, not just CT scan? Beacuse PET/CT scan is more accurate in metastasis detection than ordinary CT. It is not just about size of the node, but also about composition, PET scan can show content of the node. About your questions (but please note that I'm just a patient, not an expert):
    1a) he is not to old for this, I got this and I was older then he, average age for seminoma is somewhere in mid/late thirties
    1b) second opinion is allways good, of course, but surgery is not primary option for seminoma anyway
    2. It seems right. This node is not really big.
    3. Chemo and radiation are prefered actions, chemo is more preferable, but each patient is case for himself
    4. Cure rates for semimoma are near 100%
    45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
    Waiting...

    Comment


    • #3
      Yes, it was a PET/CT scan the dr ordered this last time. I need to correct that in my original post. Dr didn’t say anything about the composition of it. And he didn’t call it a tumor. But essentially that’s what it is, right? But when it’s in a lymph node, they call it a node? I get confused on that... for your reply!

      Comment


      • #4
        Hello. Well, lymph nodes are just a normal body organs that can be found anywhere in the body, they have normal size and shape depending where they are located. In the case of many, many various illnesses they change their size and shape. These size and shape changes can be seen on ultrasound or TC or MR scaning easily. If patient has testicular cancer, especially seminoma, first lymph node area that is checked is retroperitoneal area because its is most common area for TC to spread. About the size and shape of the node, it's not allways easy to diagnose. Normal size for the node in that area is generally bellow 1 cm. So, if someone has TC, and his nodes are bellow 1 cm, then there is like 90% chance that cancer didn't spread, but if one of them is, like, over 2 cm then there is a, like, 90% chance that cancer spreaded in that node. But with nodes that are just over 1 cm it is very hard to conclude what it is. Ok, but this is only regarding the size. Regarding the shape, if cancer has spreaded in some node, that node will probably have some unusual shape that experienced radiologist can notice (but not allways), but it is also very subjective examining, it is usually hard to conclude how strange this shape is. But PET/CT scan, beside size and shape of the node, can show composition of the node, it can show are there a cancer cells inside the node, because they have different color on the image. Of course PET/CT often lacks accuracy but it is the best non-invasive diagnostic tool for determining cancer cells in the node without biopsy or opening the body.

        I asume that doc concluded, according with PET/CT results, that this node is highly suspicious, and that there is a big chance that cancer spreaded to this node. He still can't call it a tumor, only suspicious for tumor, as only pathohistological report can confirm what it is. Next thing should be biopsy of the node that should confirm or dismiss this suspicion, but he probably concluded that the biopsy is to greather risk concering that it is located neal vital organs.

        Maybe you can contact radiologist that did PET/CT and ask him/her to give you some more detailed opinion about situation, or contact some other experienced radiologist to re-examine PET/CT images. Thet will give you better picture what is the chance that cancer is in this node, and after that you can get surgeon opinion is it reasonable to open the body and remove the node.
        45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
        Waiting...

        Comment


        • #5
          1- If it is nearby & your insurance covers it, there is no harm in a second opinion, bu it will likely be the same. He is NOT too old, I had my first TC at 20 & my second at 55, you cannot rule out TC by age and clearly his path report from the I/O proved that. Also, according to my oncologist, they never take out all the lymph nodes, doing so would create serious problems for the patient.

          2- Yes it had already spread, it can't metastasize once the tumor is removed by I/O.

          3-I would want chemo, it is highly effective and will get any tc anywhere it has spread to in his body.

          3- Chance of recurrence after chemo is in the single digits.
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment


          • #6
            Are you located in Texas?

            I think a second opinion is a good idea. Did they say what node exactly was enlarged? Was the size any different with the PET vs the previous CT or are they worried because of the SUV value of the node and do you know what the SUV value was?

            He certainly is not too old for TC and seminoma affects more older patients, where nonseminoma is more common in younger patients.

            As mentioned RPLND for seminoma is not often done but there is a clinical trial doing them now: https://clinicaltrials.gov/ct2/show/NCT02537548 the issue would be if a RPLND would be better than chemotherapy (if either is needed) given that he had a second scrotal surgery and if that second surgery could increase the risk for groin metastasis, that the RPLND would not protect against but chemotherapy or radiation therapy should cover. Of if the spermatic cord involvement would lend to higher chances of groin metastasis as well would be another good question to ask.

            Other things to consider is any risks to fertility and the need to sperm bank before further treatments if preservation of fertility is of importance.

            Mike
            Oct. 2005 felt lump but waited over 7 months.
            06.15.06 "You have Cancer"
            06.26.06 Left I/O
            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
            06.30.06 It's Official - Stage I Seminoma
            Surveillance...
            Founded the Testicular Cancer Society
            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

            Comment


            • #7
              Thank you Harxxony, Dave and Mike for
              your replies!

              The CT / PET from Jan. 17th just says “the previous study showed multiple small retroperitoneal and pelvic nodes the largest measuring up to 7x10 mm in size best appreciated on prior study image 35. That node is best seen on today’s study image 178 measures 12x7 mm In size and shows increased FDG avidity (max SUV 5.3) which is suspicious for neoplastic involvement. There are no other pathologically enlarged or FDG avid abdominal level nodes”.

              We just got back from MD Anderson today. We received news that kind of surprised us. Basically, he feels that the 3 rounds of BEP (as recommenddd by local oncologist) “overkill” for the size of the node. Unfortunately the scans we had brought on discs from our local facilities didn’t download onto their system, so he was just going by the reports we had. In fact, the dr is not convinced that it’s even cancer. He said the fact that on 2 prior scans the node measured 7x10 and then in Jan it measured 7x12 may not be significant- the calipers that measure may not be precise enough to really discriminate 2mm. The dr was most interested in the size and the shape of the node. He said radiation was still a good option. But we just don’t feel good about the 10% possibility of a secondary cancer developing in 25 years. He said surveillance is option- to see if it grows. And then we asked about the possibility of laparoscopic RPLND and he felt like that could be an option as a diagnostic and therapeutic procedure. He has set us up a consult with the vascular surgeon. I got the impression that even though the RPLND has traditionally not been part of the protocol for a pure seminoma, maybe now with the laparoscopic procedure becoming more common, maybe it will become part of the protocol? Although the chemo is effective, with all of the toxic side effects and how sick it makes people, if the benefits of doing surgery first (in hopes of avoiding the brutal BEP) outweigh the risk of the surgery, seems like a viable option. Thoughts?

              Comment


              • #8
                Is the doc at MD Anderson going to get the images to look at? A RPLND could be diagnostic but I would ask that with multiple possible metastasis if it (or radiation) is a advisable over further surveillance to see if there is any growth. With multiple areas chemo may be the best option if they are true metastasis.

                Mike
                Oct. 2005 felt lump but waited over 7 months.
                06.15.06 "You have Cancer"
                06.26.06 Left I/O
                06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                06.30.06 It's Official - Stage I Seminoma
                Surveillance...
                Founded the Testicular Cancer Society
                6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                Comment


                • #9
                  Mike, Yes he was going to get the images and talk to the surgeon and local oncologist and get back to us. Side note- seems to me they should be able to electronically transmit scans. This is not the first time we have had problems getting scans To work on discs from one facility to another **insert eyeroll**. He also drew labs but he said that labs don’t tell us much in case of pure seminoma. By the way this is Dr. Tu we saw... he’s supposed to be one of the best we hear? He just felt like the tumor was so small. We are happy about no BEP for now but uneasy bc we don’t have a plan.

                  Comment


                  • #10
                    I would lean towards chemo or further surveillance. As Mike said both surgery & radiation are targeted treatment & might miss some mets. His mets are small so probably no harm in waiting a bit & redoing the scan, but from what you have reported, I will be surprised if the next scan isn't conclusive about his need for treatment.

                    By the way, chemo is tough, but I wouldn't call it brutal, you get through it.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      So the local doc called last night and explained some things we hadn’t realized. And that you guys have alluded to. I guess we were thinking that the cancer is in one node only ...Bc that’s what illuminated on the PET. And that it would be easy for the surgeon to see when he goes in. But in fact it sounds like it could be in more than one and what if surgeon doesn’t get correct one? And you can’t get more than one node in the laparoscopic procedure. So that will mean chemo anyway. Also, Dr. Tu said that pure seminoma doesn’t met anywhere but the lymph nodes. If it mets to lung or brain, that means that it was mixed. Local doc did not agree with that statement.

                      Thanks for your thoughts on all of this. Also, we have talked to 2 people who had BEP and both had horrible experiences. One threw his back out from puking so much and the other was in the ER every other night for fluids and had to be quarantined away from friends and family, not leaving his house for the whole 9 week treatment. Please tell me it’s not like that for everyone. We are scared to death of that.

                      Comment


                      • #12
                        It is definitely not that bad for everyone. Some people don't even take time off work. It's different for every single person. Some don't lose hair and some do. Some puke and some don't. You won't know until you're in it, and usually if it is bad, it's only the second or third day after the dose.

                        It may be awful, just focus on the peace of mind it will give you and that it is preventing you from facing much worse.

                        Comment


                        • #13
                          My experience was that the biggest effect was extreme fatigue. I would drop off most any time I sat in a comfy chair. The IV anti-nausea meds were very effective & I only used a few of the anti-nausea pills when I felt a bit queasy in the days after my "long weeks", I never once vomited. By week 3 of each cycle, I actually felt pretty good, although still fatigued. They should monitor white counts & give boosters if needed, but it s prudent to stay out of crowds. I could not possibly have worked & probably best not to unless he can do it from home. I was 55 yearsold at the time.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Originally posted by Court&Speech View Post
                            Thank you Harxxony, Dave and Mike for your replies!

                            Hi there, it looks like I was on right trail deducing what docs ment with their remarks. My opinion is that so far no one can be sure did cancer spread in this retroperitoneal node or not, and for decision to start with such heavy treatment as chemo or radiation are there should be an increased level of confidence. Node size of 12x7 mm is just slightly suspicious, and PET finding about possible neoplasm in the node obviously didn't convince docs that spreading occured. Probably some of them dont have enough respect for PET/CT diagnostics. So, next diagnostic step should be biopsy, and it can be performed only by RPLND for deep retroperitoneal nodes. Question is, is it worth to do such an invasive diagnostics with significant chance of failure. Yes, surveillance seems a viable option. I am on surveillance with 14x10 mm node, so far so good. Re-checking of the PET/CT findings from another radiologist can be also very helpful.

                            Obviously local doc favores immediately chemo treatment. I'm far from an expert, but what he was saying about RPLND and seminoma spreading seems logical.
                            Last edited by Harxxony; 02-16-20, 09:36 AM.
                            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                            Waiting...

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