New member here (sort of ....) and my story
I first became aware of this fantastic forum as I was doing research following my diagnosis of Stage IIIa TC in Dec 2011. I found the site after finding MIKEBRWADE's blog, "taking cancer down, 1 ball at a time". That blog was important to me because Mike's BEP started around the time it became a realization i would follow the same protocol in a few weeks. It then brought me to this site, and I have been a regular visitor here ever since. I have never posted, but have wanted to many times, but my initial registration with the site got hung up and I was never able to post. It wasn't until this past week, that I actually found the contact us link at the bottom of the forum, from where i was able to get my registration fully processed and now I'm able to post.
So this post might be a little long, and I apologize for that in advance, but I do want to document my path over the last 8 months. I also want to post and contribute in many of the other posts that i have learned from over that period of time, and I most want to post my condolences to 2 recent brothers we have lost from these forums.
Actually i will try to keep it short and detail some of the areas which i have not seen covered as much in the hope the info can help others.
May 11, 2012. I received an Email from Dr Einhorn at 10pm on a Friday night stating that I was now Cancer free.
Dec 2011. 50% seminoma, 50%EC. Mets to lymph nodes and 2.2cm mass found in my lungs. AFP and BhCG both good. Diagnosed stage IIIa.(actually my Urologist when delivering the news 1st told me I was stage IV). treatment planned Jan 23 with 4 rounds of EP (I am a soccer coach so they wanted to not impact my lungs)
Jan 13 2012. Fri 13! My initial diagnosis of IIIa was upped to IIIb. I received a call from my Oncologist informing me of the change in my status. I had not had LDH marker tests so i had this test done and the numbers came back in the 500s. With this elevated tumor marker I was pronounced stage IIIb (Intermediate) and my treatment was changed from 4 rounds of EP to 4 rounds of BEP.
2 rounds of chemo completed and I requested that Dr Einhorn be contacted. My oncologist did contact him and Dr Einhorn responded that i did not need 4 BEP and just needed 3. Wow was that a great make up for the Fri 13th news a month or two earlier!
Chemo completed. LDH still elevated but down to around 350. CT Scans show that all mets to lymph nodes were down to about 1cm, but the lung met had not changed size and was still 2.2cm. I got a referral to visit Dr Einhorn and prepared myself for the trip to Einhorn and then admission for an RPLND at Indiana that i felt was going to be required.
April 17 2012. Dr Einhorn visit. Wow is this guy good. No he is great. Had my referral visit with him. In 40 minutes with Dr Einhorn, i learned and understood more about my TC than I had done in the 4 months prior. He drew diagrams, clarified and answered all my questions and made me feel so at ease. 3 important things I learned that morning:
1; TC patients do not need to drink contrast before CT scans.
2: LDH tumor markers are not even measured in Indiana.
3: I do not need an RPLND surgery yet.
What was decided is that the mass had to be removed from my lung to ensure it wasn't cancer. he did not feel it was cancer but he sent me home to schedule a VATS (video assisted Thoracic Surgery) wedge resection of the mass in my lung.
After calling my wife to tell her she did not need to finalize the arrangements we had been making for her to join me for the RPLND, I went to a nice Irish bar, had a great Irish breakfast and a pint of Guinness (or 2 or 3!) and flew home the same day.
If the mass was found to be cancerous or Teratoma I would wait for my next CT Scan to see if the lymph node mets were still shrinking. As Dr Einhorn told me, if he had a CT Scan right now he could easily have lymph nodes of 1cm and it wouldn't even be reported, but with cancer patients that 1cm was about the max size. So if they hadn't shrunk then yes I would go back to Indianapolis for RPLND.
May 8 2012. VATS wedge resection done locally. The removal of the mass went well. Lung surgery has potential issues (lung collapsing, fluids on the lungs) but everything went well. 24 hrs in ICU and 3 days in hospital and a 12inch tube coming out of my lung attached to a box collecting fluid, was not a day at the beach, but was OK. The VATS meant they only had to make 3 small incisions to do the work. The pathology of the mass report came back showing it was not cancerous nor teratoma but a granuloma cyst.
I emailed Dr Einhorn upon leaving hospital that Friday to ask him if that meant I was offically classified as cancer free and now in remission.
Fri May 11 2012, 10pm: Dr Einhorn replied to my email from his ipad with these words included "You are cancer free and almost certainly cured"
My tumor markers post VAT Surgery are great and I have my CT Scan in early August.
So in summary here are a few things i have learned with my TC trip:
1: This forum is excellent
2: Although Cancer and chemo are "dirty" words the advances in science and medicine are incredible. All the side effects have been bearable and well managed.
3; Dr Einhorn is the most wonderful man. I wish I had done what one of our brothers here did at his visit, and that is have my photo taken with Dr Einhorn, as he will most likely be the most incredible man I will meet (unless I get a chance to meet Nelson Mandela)
4: Caregivers are amazing people. From day 1 i have always said that I felt lucky that I was the one diagnosed with cancer, as I could not have been strong if it was my wife, my son or my parents or brothers.
5: As to the point above and people saying how strong you are as a patient and that they couldn't do it. I don't agree. I think in the situation you chose to be strong and you do not feel like there is another option. There isn't, but it is easier to be strong for oneself than to be strong for another, work full time, deal with all the medical and logistical issues, take care of the family and take care of themselves. The strongest people in the world are the caregivers!
6: Although I have never met anyone here, or even communicated with you, I feel like you are all family.
7: It is OK to cry. As strong as I was and am about my own TC, I broke down in tears reading of the passing of 2 of our members here in May and June.
You'll Never Walk Alone
Welcome to the forum, and what a fantastic introductory post. It is great to hear stories like yours. No doubt what you wrote will be of use to the members, current and future.
Great great story! I agree with you about when people say "I couldn't do what you did." Well, yes you could. There simply wasn't another option. At any rate, I enjoyed (maybe a poor word choice---nothing enjoyable about this mess) reading about your journey and concur that Dr. Einhorn (I too had the pleasure of meeting him when I asked for a 2nd opinion about a suspicious lymph node) is an angel on this earth.
*Fed, a question: I have forgotten the criteria that makes a person Stage I II or III, why was the OP stage III if he had no markers showing and only one place on the lung?
fed. thanks for the welcome.
Originally Posted by BarclayBanister
Thanks for the post.
I was stage III because of the mass in my lungs. it was at 1st thought that was cancer as we had no previous baselines to go against, so beyond the lymph nodes makes it stage III.
Great story! Glad to have you here and welcome aboard, and congrats on the all clear of course!
February 2011 - DX Stage IIB, 90% Embryonal Carcinoma, 10% Yolk Sac
Mar-May 2011 - EPx4 per Dr. Bosl at MSKCC, administered locally in DC
6-Jun 2011 - post chemo CT shows one lymph node at 1.4cm remaining
22-Jun 2011 - RPLND with Dr. Sheinfeld at MSKCC, all 51 nodes removed negative
Dec 2012 - 1.5 YEARS ALL CLEAR!
Well it has been a crazy year!
Dec 16 2011. Orchiectomy
Dec 23 2011. Diagnosed stage IIIa Tc.
Aug 2012. 1st follow-up. All clear.
Dec 19 2012. 2nd follow-up. All clear.
But the future is looking great.
you'll Never Walk Alone.
Right orchiectomy 4/18/08
Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
HCG down to 7.2 10/28/08
HCG back up to 198 12/29/08
1 X PVB 1/2/09-1/6/09
2 X HDC w/ stem cell rescue 2/4/09-3/14/09
Follow-up with Dr. Einhorn 4/22/09
3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09
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