Please help me .. very worried

[Concerned Sis]

I need your help. My brother (age 41) was dx w/ pure seminoma, stage I w/ "microscopic" vasular invasion back in March of this year. MD's here (who do NOT know WTF they are doing) told him 98% cure rate without radiation, 99% cure rate with radiation. He took 30 treatments to be safe, finishing up in June of this year. Felt fine and was scanned every three months afterwards. Received "clean bill of health" on his second scan that was completed the end of October.. Mid November he starts having profuse night sweating and horrible lower abdominal pain. He returns to his oncologist and is rescanned. What do you know.. they MISSED his tumor (out of the radiation field according to incompetent radiologist) that grew from the size of a walnut in July to the size of a "large orange". When they reviewed his scans they admitted the tumor had been there the entire time. He was never cured and he received radiation to the wrong area.. So, his onc. here in South Carolina, called Dr. Einhorn (his college friend) who told him to start BEP immediately. He has had his first round of BEP w/ Bleomycin every 8 days (I think that's what he said). He has an appointment with Dr. Einhorn Jan 9 and will drive 10 hours one way to meet him.

Here is my biggest fear and why I am here. The night sweat dissipated during the initial hospital infusion (last month) and the tumor pain decreased immediately. Now, today, he said the pain has returned somewhat (though not as bad as it was initially) and his night sweats are back in full force.

Is this an indication that the chemo is not working? Please tell me that chemo itself can cause the night sweats and that a 15cm tumor isn't expected to evaporate after the first chemo round.

Can you help me? I am frantic. Can you give me any advice? Should he pack his bags and move to Indiana and let Einhorn direct his care? I'm so scared for him. They told him he's now a stage II but I don't know if I believe anything they say anymore. I want to know that he's fine even though he still has pain and is sweating at night.

Please help. I can't lose anyone else to cancer. Our family has been innundated with this dreadful disease this year. I am deeply worried for him and would like to tell him something encouraging.

Also, do they do RPLND for pure seminoma? If not, will they remove his tumor that's located in some muscle (begins with an M but not sure what muscle it is). What is the protocol for this? What are the stats for seminoma?

[Scott]

What a mess. Give the chemotherapy a chance; it will cure your brother. RPLND is sometimes necessary to remove residual masses after chemotherapy. Hang in there.

[Concerned Sis]

Scott, I was hoping to hear from you. Talk about dependable! Thanks for being here for me (again) *sigh*.

I haven't read about RPLND for pure seminoma. Is this a treatment option for him? Have you had chemo? Do you know anything about night sweats?

I pray it works. They did biopsy the huge mass right before chemo began and the pathologist said that he couldn't tell if it was seminoma or non-seminoma. Back in March it was dx as pure seminoma when his testicle was removed. WTF? They are stating that although the pathology was inconclusive (this time) they feel sure it it still seminoma since his markers have always remained normal and not elevated.

But for seminoma, to grow so huge in such a short amount of time is a bit out of character isn't it? I just don't know anymore...

I just can't believe the obvious was missed and I wonder if this constitutes malpractice in any way. Everyone at the clinic is hanging their heads in shame, ESPECIALLY the radiologist. I want to know how this could happen.

If anyone has any advice I will take it. I know Dr. Einhorn is the best and am looking forward to my brother's second opinion with him. He seems like a gracious man who will know exactly what to do.

Thanks for being here. This is the first place I ran to.

[Scott]

The pathologist couldn't tell whether it was seminoma or non-seminoma? Sounds like reason to involve another pathologist!

RPLND isn't normally first-line treatment with seminoma. It would only be to remove a residual mass after chemotherapy.

I'm very glad your brother is consulting with Dr. Einhorn. There are too many questions right now, and he'll clearly have the answers you need.

[Scott]

...will they remove his tumor that's located in some muscle (begins with an M but not sure what muscle it is).

Might the "m" word be "mediastinum"? That's the area in the center of the chest, between the lungs.

[Concerned Sis]

That's not it. It's one inch below the belly button, two inches over, deep in some muscle. I can get clarification on it tomorrow. Not sure it matters at this point. All I know is that it's HUGE. It hurts when he brings his knee to his chest (but it doesn't hurt in the chest area). The more I type the more complex it sounds. It's a common muscle...

Do you think his prognosis is good? Can he be cured? Is seminoma the size of fruit common? I guess if it's been growing since March, it's not really "fast" growing, huh? Should he show improvement at his next scan next week? What if it doesn't?

What if, what if, what if...

[Scott]

If you look at the staging information at this link, you'll see that there is no "poor risk" seminoma.

[Concerned Sis]

Scott, thanks for being here (tonight of all nights). Never thought I'd get reply on xmas.

You have the same name as my brother, by the way.

Will update later as the info comes in.

Paige

[Scott]

Please do keep us posted, Paige, and let Scott know we're pulling for him. I believe he'll come through fine, and next Christmas will be a lot better than this one.

[dadmo]

Concerned Sis:
I'm sure it doesn't seem it now but your brother should be ok. You have a few things to take hope from 1) the spread of the cancer is following the predicted path, 2) there is no "poor risk" classification for seminom and 3) Dr. Einhorn will direct his treatment.
Just a few other things don't expect the tumor to shrink too quickly, you can have the chemo drip and Bleo push done close to home and do be shocked if a tumor that size leaves a mass behind that has to be removed surgically.

Scott:
I also want to thank you for taking up the slack yesterday.

[emilyalex]

Dr. Einhorn

Paige - your brother will be under the best care possible with Dr. Einhorn. Even if Einhorn just consults on his case, he'll be in good hands. My fiance and I went to Indiana just two weeks ago to see Dr. Einhorn and immediately Dr. E disagreed with the pathology report about the mix of cancer. Upon further examination, Dr. E's pathologists determined our paths here in Houston were a bit inaccurate on the inital diagnosis. Once in Dr. E's hands, you shouldn't have any more of this "we're not sure" business.

We'll all be here for you and praying for good results.

Emily

[Concerned Sis]

You guys are the absolute best. Thank you. My concern is that the cancer did not follow the normal route. They radiated the "hockey stick" area thinking that is where it would travel. Instead, the tumor was missed because it was in some muscle where they don't "normally look". Either that or they are lying because they missed the obvious. Don't think we will ever know the truth unless Dr. E gives an honest answer. Dr. Einhorn was directing his care from the onset but on the assumption there was not a mass they missed on the CT scan. I can't WAIT until his appointment. I told him to be sure to take pathology reports to him, too. They keep calling it germ cell and stating it doesn't MATTER if it's pure seminoma or not, saying even if it's inconclusive, it has to be pure seminoma because his markers don't ever elevate.... We will see. It's quite a mess for sure.

I'll update after his CT scan .. not that I trust they will know WTF they are looking at this time around, but perhaps they will be more careful. The oncologist & radiologist turned three shades of red when my brother told them he was driving to Indiana to meet Dr. Einhorn personally. I know Dr. E will know exactly what to do.

I appreciate you all being here for me. Sorry for the frantic post but we've not had a good year. My mother was dx with breast cancer in January, my brother dx with TC in March, my mother in law has metastatic breast cancer (went from a stage 0 to a stage 4 under the care of the same doctors in less than two years), I was dx with melanoma in July (caught early) and tested positive for the breast cancer gene in October. I'm (36 years old) at home recovering from a bilateral prophylactic mastectomy because I didn't want to chance being treated at the same clinic for ANY reason. Before this year fell to crap, we were a very healthy, slightly disfunctional, normal family. None of us took any medication for any reason and we were never sick, overweight or unhealthy in any capactiy. It all hit at once and it seems we can't catch a break.

I'll keep you posted and if anyone has had experience with bleomycin causing night sweats please let me know. I would rather the chemo cause vs. the cancer.

All the best,
Paige

[ivannabanana]

Hi Paige

Sorry to hear about your brothers situation...You must be so worried and frantic... My hubby recently underwent 4xBEP for TC... dx in Aug 2006 and has now been puit on surveillance.... He finished hys BEP 5 th NOV.... My hubby, George has extra gonadal germcell tumour, which basically means he has TC but not in hys gonads (testicles)...Hys tumour was described as the size of a small melon... it has now shrank to 6cm...he has other small lesions, one n mediastinum and in hys pelvis... hys tumour markers have returned to normal and so our consultants felt it would be ok to monitor hym... he has to get blood tests every month and ct scan every 3rd month... hys energy levels are rising and he is getin more lyke my george...Hys hair is coming back as well.... hys discolored nails are growing out and hys taste has came back... A friend who we met in hospital suffered from night sweats he blamed the bleo for that cos it only happenwhen he was on that particulatr drug....I know its very scary and your family have had a rough year, but do try stay positive.... Your choice to visit Dr Einhorn seems the way to go... I actually emailed Dr Einhorn way back at begin of my hubbys diagnosis and i gt reply same day... I am in Scotland and our Health system is different from USA but we had a very good team behind us, they made you feel very special and confident, we are so grateful to our consultant Dr Jeff White, a very intelligent gentleman with a very compitant team...I hope you get answers to all your Q's and that your brother starts to feel thyngs are going right for hym.. Im wishing hym well and thynking about you all.... Bless Yvonne

[Mom]

Paige, you sure have been through hell, but you're on the road out of there! Night sweats are normal. Sometimes my son took a shower in the middle of the night. It still sounds like a seminoma because of the lack of markers and it's size. It almost sounds like the tumor was hiding behind something and that is why it was missed. I'm making excuses for their incompetence. It should never have happened. Hang in there. Dianne

[Davie]

Paige,

Check out the previous posts of indiana9. Here's a copy of his signature with e-mail address;

Brian, [email protected]
left inguinal orchiectomy 9/21/2005 > seminoma, stage IIC 12cm x 12cm retroperitoneal mass> 3XBEP completed 11/30/2005 > residual 9cm x 7cm mass removed 3/29/06. All necrotic tissue found > Surveillance

Brian's case sounds incredibly similar to that of your brothers.

Davie