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Ongoing journey of a non-seminoma

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  • curt
    RPLND Results and lessons learned

    Well, I had my RPLND on 12 February. Interesting journey and am SO happy that it appears as though the worst is over. I had great news from the surgery. They removed 28 lymph nodes and none were cancerous – absolutely the best results we could have hoped for. I won’t have to undergo chemo unless I have a recurrence – which is less than a 10% chance. There was some discussion as to whether to go straight to chemo based on my initial lab results but the major factors that made me select the RPLND were; 1) possible long-term side effects of chemo (I didn’t want to undergo chemo unless absolutely necessary, 2) Part of my tumor was Teratoma which does not respond to chemo as well as other tumors. I’ll be on an aggressive surveillance program for the next 6 years but that is not big deal.

    Getting ready for surgery consisted of not eating anything past breakfast on Monday and consuming 2 bottles of Fleet about 3 hours apart in the afternoon. Let me tell you, Exlax has nothing on Fleet. Went in for surgery on Tuesday morning at 7am and was on the table for over 6 hours. No getting around that the RPLND was pretty horrible, especially the first couple of days after surgery. Fortunately I have experienced that the Lord has blessed the human brain to remember times of pain in sort of a fog, kind of like you aren't sure if it really happened. I opted for an epidural to control and block the pain – I’m really happy I selected that because they basically numbed my gut for the first couple of days. One of the regular effects of the RPLND is that your intestines shut down for a couple days after surgery (anywhere from 4-7 days). My stomach woke up on the 4th day (Friday). I was able to consume liquids on Friday morning and solid foods by the afternoon. They let me go home from the hospital on Friday evening. I went in the hospital weighing around 215lbs and came out weighing 240. I didn’t eat anything but a very small meal on Friday – it was all from the IVs, pretty amazing. I’m down around 200 now and feel great (I needed to lose weight anyway and the major benefit is that I’ve lost my “love handles”!)

    One of the things that really saved me was my IPOD. I went to the library and uploaded 3 books that were in CDs into my IPOD. Those books, coupled with the music on the IPOD, were real life-savers to me. They doctors didn’t want me in bed unless I was sleeping so I spent 15 hours a day in a chair, lights off, eyes closed, resting and listening to the books. I was too uncomfortable to actually read a book and watching TV took too much effort (and nothing was good on anyway).

    Even though I felt horrible I walked around the ward 5-6 times a day. I always felt better after walking (although initially it was always tough getting started). Keeping your lungs active was a constant challenge. They give you a gadget to blow in to ensure you keep your lungs exercised. Initially this was always pretty painful but after 10 or so huffs it was amazing to see how much the airflow improved and how much better I felt.

    I had my 46 staples removed a week after surgery. I was amazed at how painless it was to have them removed. I didn’t feel anything. In less than a week I was walking around, eating well, and feeling pretty good. Within 2 weeks I was sleeping on my side throughout the night.

    I should be back to 100% in a couple weeks and plan to go back to work on 13 March. The body’s capacity to heal is pretty amazing.

    But whenever I had it bad all I had to do was look at the other cancer patients or through the window to the adjacent ward and see the injured heroes from the war being admitted - it put things into perspective rather quickly. There are so many people that have it so much worse. I can't believe how lucky and blessed I am.

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  • petep
    I'll let others weigh in...but from all I have read...

    - CT scan is the standard protocol for TC, not PET scan

    - if you do show enlarged lymph nodes...the standard is chemo - 3xbep or 4xep, depending on who you talk to and where you go...but the 3xBEP is really the gold standard. it goes to 4xBEP if in the lungs...above the retropar. cavity.

    - others can correct me, but from your pathology, I would think the usual course if you showed lymph node activity...would be 3xBEP and then possibly a RPLND (for the teratoma, of it does not shrink and go away)...

    - chemo first though, especially due to the embyonal component, which can skip the lymph nodes and go to the lungs.

    - what I do not understand, if they can see no lymph invasion, and no nodes anywhere else...and the markers are coming down...why do an RPLND?...and also, just because the cells may be concerous on RPLND, this does not necessitate chemo...many here have had lymph node invasion, rplnd...and no chemo....(but I'll qualify this as you showed embryonal...if you show lymph node invasion, many would go with chemo)

    ...the most important point, read through this post and others opinions...and realize we are not get a 2nd opinion from one of the experts....there are links at the front of this is absolutely scary how many people are misdiagnosed or start down the improper treatment path with tc.

    - you mention 2xbep...that can be the case, no markers, nothing on CT scan....and it is used after surgery....but skipping this and going to surveillance is often suggested as there may be a 70+% chance the surgery alone eliminated the tc....if you do show a recurrence, and need 3xbep, your cure rate is not diminished by choosing surveillance. If had 95% embyonal and chose surveillance...but I did have a recurrence...but most do it is not the majority.

    - you write well and assuming you captured everything accurately, I would highly suggest the 2nd opinion.

    Here are 2 great articles to read:


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  • curt
    started a topic Ongoing journey of a non-seminoma

    Ongoing journey of a non-seminoma

    Going through my TC journey the testimonies/questions and answers I found on this website have provided me with a wealth of information and a great deal of comfort in getting mentally prepared for what I am about to face. I thought I’d provide a brain dump of everything I’ve learned in my brief, but exciting, battle with TC so far in the hope that someone else may be able to leverage what I’ve learned. One thing in particular that I couldn’t find any information about in any posts was the use of a PET CT scan to help diagnosis how fare the cancer spread – I’ve included that experience as well.

    Who would have thought it – a 44-year old male with Non-Seminoma Testicular Cancer. Here’s my story. I had a vasectomy in November and a couple of months later, had experienced some soreness and minor swelling in my left testicle. I thought it was due to the vasectomy, so I wasn’t too concerned. I had just started a new job on the 8th of January, and had just retired from the military on November 30. I hadn’t selected a primary physician yet in private practice as of yet, and I didn’t feel right about taking time off to see a doctor, even if I knew one to go to. Fortunately on 18 January I went for a post operative hand appointment and stopped by the urology clinic that conducted the vasectomy and explained I had a sore testicle (slightly swollen and tender to touch) for the previous 10 days or so. I had done some research and I couldn’t feel any bumps, growths, etc… so I didn’t think it was serious. Based on my research, I would have just taken Motrin for a couple of weeks to see if it got better, thinking it was some type of infection. Upon explaining my symptoms to the urologist, however, he immediately sent me for an ultrasound. When I returned to urology, three doctors were waiting to talk with me. They asked me when I last ate, and I said the night before. Well, three hours later, I was on the operating table for a radical inguinal orchiectemy.

    Blood information on surgery day - 18 Jan (orchiectemy day!):
    LDH: 144
    AFP: 88 (Alpha Feta Protein is the key marker for cancer)
    bHCG: <0.2

    Comment: All the research I’ve conducted shows no conclusive link between a vasectomy and cancer.

    I guess I was one of the lucky ones because my AFP level acted as a marker that something was amiss. Apparently some people’s AFP levels do not elevate even though they do have cancer. The actual orchiectemy went well but I had an epidural and my bladder went “to sleep” (apparently that happens in some patients having epidurals). Having had a number of surgeries, I would go under general if I had to do it again – even though I felt horrible for 24 hours after surgery under general anesthesia. Unfortunately I could not urinate after surgery (out at 3pm) and didn’t have the catheter put in until 6 am the next day – 1600 cc of urine later I was good-to-go but had to wear a catheter over the weekend because of bladder distention. For all the horror stories I read on the net, I was a bit anxious about having the catheter “installed” and removed but it getting in and out wasn’t any big deal – a little discomfort was all.

    A week later, on 26 Jan my AFP level dropped to 26.4 - LDH and bHCG were in normal limits. That was great news and right at the level they had hoped (the half-life for this type of cancer is a bit under 7 days). The trouble was the tumor biopsy revealed a 2cm x 2cm x 3.5cm mixed cell tumor consisting of:
    50% embryonal
    40% teratoma
    Areas suggested of yolk sak

    The entire tumor was confined to the inside of the testicle – no bumps protruded out.

    Pathology Results:
    Focality: unifocal
    Margins: uninvolved by tumor
    Intratubular Germ Cell Component: Identified by H&E and IHC (H&E and IHC are stains used to identify the type of cells)
    Lymphvasular Invasion: Identified
    AJCC Pathologic Stage: pT2

    All the doctors are very surprised because this non-seminoma cancer normally strikes those between the ages of 18-35. The only risk factors I have is being a white male and of Scandinavian decent – no family history of cancer. The doctor told me that I had a 99% chance of non-seminoma based on my elevated AFP levels – this turned out to be the case.

    According to the doctor there are three criteria they look for to determine whether or not there is high probability of recurrence. They are: 1) vascular invasion, 2) lymphatic invasion, and 3) % embryonal carcinoma in the tumor. Lucky me, I had all three!

    The oncologist I talked to said that based on my AFP levels that he could justify giving me two cycles of chemo – he couldn’t really justify three cycles (he’d use BEP: week 1, M, T, W, Th, Fri, week 2: T, week 3: T, and repeat). He said that it would probably take me 3 or 4 weeks to recover from the chemo. i.e. appx 10 weeks before I could get back to a “normal” life. The more I read about the possible long-term effects of chemo, the more I hoped an RPLND would do the trick. I also did some research and found that if by chance you are misdiagnosed, two cycles may not cure you. If you don’t get it all, it is also possible the cancer could build up a resistance to some of the chemicals. Bottom line, we weren’t too sure if two cycles was the right amount, too much, or too little. There was one other data point I was hoping to count on – PET CT Scan results – before deciding on my treatment plan.

    I had the opportunity to undergo a PET CT Scan as part of a clinical trial at the hospital. The Positron Emission Tomography (PET) and Computerized Tomography (CT) are both standard imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations, but has not been approved by the FDA yet for this type of “diagnosis”. The highly sensitive PET scan detects the metabolic signal of actively growing cancer cells in the body and the CT scan provides a detailed picture of the internal anatomy that reveals the location, size and shape of abnormal cancerous growths and from what I’ve read provides an additional 10-15% more precise that a CT scan alone. I didn’t eat anything for 20 hrs prior to the procedure. It is important that your blood sugar is low so the isotope works well. The entire process lasted about 2 hours. 45 minutes sitting completely motionless while the tagged isotope goes through your body, and another 50 minutes in the tube (more like an MRI machine than a CT scan). I was expecting to be in there for less than 30 minutes but found out after the fact that if you are over 200lbs (I’m 6 ft 2in and 215lbs) that they take more pictures per segment than they do for “skinny” people.

    Unfortunately the PET CT Scan does not do very well in identifying small tumors or other “microscopic” cancer that is traveling through the blood stream. If I glowed like a Christmas tree my treatment would have been, as I understand it, to proceed directly into chemo. However, my results were inconclusive, so based on the high probability of recurrence and the fact that teratoma is not as receptive to chemo, I’m undergoing a Modified Left Side Nerve Sparing Retroperitoneal Lymph Node Dissection (RPLND) on 13 February.

    The RPLND recovery should be 4-7 days in the hospital, followed by 4-6 weeks of recovery if everything goes well. Apparently, they needed to wait until my AFP levels return to a normal range prior to the RPLND – this is still within the 6 week window that the experts talk about – the time between orchiectemy and RPLND – that most experts say is important in maximizing your chances of beating the cancer. During the RPLND if the doctor finds any cancerous lymph node >2cm, or more than 5 lymph nodes that are cancerous at any level, she recommends the surgery be followed by two cycles of adjunct BEP chemo-therapy. If the RPLND surgery results comes back slightly + or negative I’ll go on an aggressive surveillance program for the next 5 to 7 years. From what I’ve read, I’ll have a 90% chance of beating this thing with just an RPLND if the cancer hasn’t spread too much in the lymph nodes. It would be nice to not have to undergo chemo. We’re crossing our fingers and praying for the best.

    Interesting note on lymph nodes. Apparently everyone isn’t exactly the same when it comes to how many/where your lymph nodes are located. They have to do some “searching” to ensure they get all the lymph nodes they want out.

    God willing, I’ll continue my story when I’m recovering from the RPLND in a couple of weeks. Tomorrow I get to take the “liquid drano” that is going to clear out my intestines in preparation for the surgery! This ought to be interesting.