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Soul Mate has Bladder Cancer And I\'m scared

6 years 8 months ago #41619 by marj9023
Many thanks to Mark, Mike, Cynthia and Barbara who have replied and shared your stories with me. I can't begin to tell you how much your support means to me/us. I'm feeling so needy and vulnerable. Eli's in his own place and doesn't want to discuss the cancern. I won't say he's in denial, but maybe by not thinking about it makes it not real to him. That said, those sleepless nights are taking their toll on both of us. We're celebrating our 43rd wedding anniversary this week. After searching the archives and reading so many of your wonderful success stories, I'm expecting to celebrate our 50th! Only 8 years to go :)

Mike, thanks for the encouraging info about the moderate retroperitoneal lymphadenopathy. Actually the enlarged lymph nodes really concerned the Roswell urologist, Dr Guru. We were told they may have to biopsy the nodes and if the cancer had spread they would only treat with chemo and not do the RC. After the Roswell Park radiologist reviewed cross sections of the CT scan, the urologist phoned us late Friday with the first good news we heard in weeks. They considered the lymph nodes insignificant and they didn't need to be biopsied! We're going to meet with an oncologist mid-week to discuss chemo therapy prior to surgery.

Roswell Park Cancer Institute is around the 20th spot nationally and of course isn't able to compete with Memorial Sloan-Kettering. It's also located only 30 minutes from us. Dr. Guru's bio's are impressive especially in regards to robotic surgery and IMO he seems the best in this locale. Initially I wanted to consult with him for a second opinion and I'm glad I made the appointment. I'm not even sure they can do robotic surgery on Eli but it's good to know he's an expert.

Memorial Sloan is 8 hours drive time away and would be a hardship, especially at our age. That said, I will find the best surgeon/clinic I can. Should I consult with someone at Memorial Sloan-Kettering for a third opinion?

http://mission.roswellpark.org/article/dr.-guru-named-huben-professor-urologic-oncology

I'm not sure I can post a link, forgive me if it's unacceptable. I guess I'm looking for opinions and reassurance.

Thanks again to everyone for your support and for caring. I love a poem by EE Cummings. In closing, I want to share the last verse with all of you.

i carry your heart
i carry it in my heart

—-E. E. Cummings

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6 years 8 months ago #41570 by mmc
Marjorie,

Moderate Retroperitoneal lymphadenopathy means there are some abnormal looking lymph nodes behind the wall of the abdominal cavity. That could be bladder cancer spread to nodes or it could be nothing. There is likely going to be some sort of follow up on that.

Since Eli is in great condition otherwise, they will likely talk about removing the bladder. Many of us here (including me) have had our bladders removed and we're doing fine. If it has gotten to the lymph system, they will likely want to do additional testing to see how far into the lymph system. If it has gone into the lymph system, they will likely want to do chemo before the surgery.

It is a complex situation and he should try to get to a top bladder cancer hospital for treatment and the surgery. This is not something you have your local urologist do unless your local urologist is the top guy at Memorial Sloan Kettering or the like.

How did we all cope with it? I can tell you that I am pretty sure it is harder on those who care for us than it is on us. At least for me it was just figuring out what the best next step was and then doing it. Then I just did it. Doesn't mean there was never fear of the unknown. There was a time when I was told it had already spread to both kidneys. I was pretty sure that meant I was going to be dead pretty quickly. It turns out that diagnosis was bad and it was all contained in my bladder. Got my bladder out and I'm over three years cancer free now.

I hope things turn out well. Keep us informed of how things are going and keep asking questions. Take notes when at the doctor because it is easy have the cancer word just echoing around in your head and miss a lot of what the doctor says about tests and treatment plans.

Best of of luck to both of you!
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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6 years 8 months ago #41562 by Babsiebob
Marjorie
I was diagnosed with invasive high grade urothelial carcinoma on April 28, 2008.
In June I had a radical cystectomy with an ileal conduit.
It was a very rough surgery and I was in the hospital for 25 days with all kinds of complications but it has been almost 4 years and I do everything now that I did before the diagnosis. Your mate is very fortunate to have you to care for him. In time he will be back to doing his usual things.Good luck and hang in there.
Barbara

Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good

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6 years 8 months ago #41561 by upnorth
Marjorie,

You have done a very good job so far with helping you'r Soul Mate, Eli. It sounds to me as if you have been there every step of the way through this journey. That is a beautiful thing to see someone care so much for another.

But please remember that you have to allow yourself to rest and stay strong. This is a battle that takes so much energy from both the patient and the care giver.

I know its hard to relax and rest, but you have to for both of your sake. You are doing a great job and I salute you for that. Don't ever feel that you haven't done enough to help Eli. I know that I am so grateful for everything that my wife, family , and friends have done for me, and keep doing for me.

Try and see if Roswell has a support group for you to stay in contact with. It might help you to have someone close by to help YOU along the way.

Remember we are here to help you as much as we can. If you have any questions please feel free to post them. I am sure that someone (more knowledgeable than I am) will be able to help you out.

Stay strong, and God Bless.

Mark

Age 51
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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6 years 8 months ago #41557 by Cynthia
This is your own thread. I am sorry you had to look for us but know we are here for you. Roswell Park has a good reputation, keep us updated.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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6 years 8 months ago #41556 by marj9023
I don't know where to begin. I'm not even sure if I should be posting to the New Users Info or the invasive bladder cancer forum. All I know is I desperately need support so I'll do my best to introduce myself. Eli is my soul mate, my best friend. We're together 43 years. We're located in Western New York near Buffalo, near Roswell Park Cancer Institute.
Eli is 75 years old and has been very healthy, in good physical condition and taking no medications.

January 31, Eli had a cystoscopy with the preoperative diagnosis of acute urinary retention secondary to BPH.
Postoperative diagnosis is the same with benign prostatic hypertrophy with lateral lobe obstruction and a bladder tumor. On Feb 21 he was operated on for a transurethral resection of the prostate and the bladder lesion was removed and biopsied.

The pathology diagnosis of the urniary baldder is invasive high-grade urothelial carcinoma. The prostate gland is consistent with benign prostatic hypertrophy.

Eli had a CT scan on Mar 16. There was no lymphadenopathy or masses seen in the pelvis. Liver, kidneys, spleen, adrenals, pancreas appear normal.

Moderate retroperitoneal lymphadenopathy. (I have no idea as to what the retroperitoneal lymphdenopathy means). Eli did pick up a staph infection post op and responded to antibiotic treatment. They did another urine culture March 16 and it was negative. I don't know if that could cause the enlarged lymph nodes.

The CT impression was significant irregular diffuse thickening of the bladder wall, suspicious for carcinoma. Significant enlarged prostate. This was already confirmed by the biopsy diagnosis: invasive, high grade TCC, benign prostate.

Roswell Park is located in Buffalo. Last week I scheduled an appointment with one of their urologists for this Friday.

I'm trying to be upbeat for Eli. Meanwhile, I can't eat or sleep. A couple of weeks ago I presented to the ER with an acute panic attack. I've read though so many of the archived posts but I'm unable to understand how anyone can cope with this. It will get worse, I know, but we'll know more after our visit to Roswell Park.

Thank you for this website.

Marjorie

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