Bongs Bubbles & Carpentry Kits!

14 years 11 months ago #2299 by Rosie
Replied by Rosie on topic Bongs Bubbles & Carpentry Kits!

I needed to copy this and send this to you and your husband in response to his dire tentative pathology report. I posted this in answer to another topic but feel it good to post for everyone to see. There have been many statements of T1 being understaged stating various percentages of the time. I want to clarify all that T1 is often OVERSTAGED also. - bottom of page REVIEW PATHOLOGY. WHY IT IS CRITICAL. Where did the T1a that Wendy mentioned come in? T1a is the lowest of the T1 invasions there is also T1b, and T1c. Keep up the hope that this initial pathology opinion report is overstaged so neither you nor your husband concentrate on extreme measures or stressing decisions that may not be necessary. You have time.

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14 years 11 months ago #2283 by wendy
Replied by wendy on topic Bongs Bubbles & Carpentry Kits!
Hi Bubbles,

I'm sorry about the diagnosis. T1a, high grade is very serious and the uro is being most prudent suggesting bladder removal. Because of the danger of understaging, also because of his young age.

He has a long life ahead of him. Some men find the idea of cystectomy a fate worse than death, other men don't hesitate. I hope your husband has no trouble dealing with the harsh realities. There is every reason to have hope, he can survive this. And that's what it's all about.

Dana Farber is an excellent place to go, I hope you're lucky and find a doctor you can relate to. You need a surgeon who can do all the newest techniques, including nerve sparing, internal pouches and neobladders. Many men still keep erectile function these days after bladder removal. You should aim high.

In case noboby tells you, there is another important option, and that would be bladder sparing using combined modalities of chemo and radiation, but patient selection criteria are very strict. If you want to learn more: I think Dana Farber could do this, but Mass. General are at the cutting edge with this approach, and it's about teamwork.

Something I learned recently and which I find very important: Survival statistics showed that progressing from stage T2a to T2b had as much impact on survival as distant metastasis. That's a very good reason to take definitive action before this can happen.

Survival for a T1 bladder cancer is very good after cystectomy, you can see the survival stats here:

I know many men who've gone through what you're husband is going through and if you want, I can find someone he can talk to, either phone or email, whatever he might want.

You also have to take time to look after yourself. There's nothing more stressful than what you're going through (not that I have to tell you that). I was primary caregiver for my sister, that was a worse case scenario. Not long after her death me and my other sister both got dxed with cancer! Another worse case scenario, but it can happen. I know I was on the verge of a nervous breakdown through it all and feel it was the stress that made my own tumor grow so fast. So I can't say it enough Bubbles, please take care of yourself as well.


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14 years 11 months ago #2270 by clur
Replied by clur on topic Bongs Bubbles & Carpentry Kits!
Hi The Wife (Bubbles)
I just wanted to say what a complete bummer .I hope your second opinion gives you some options.
Your husband is lucky to have you to go through this with him I know my husbands support has made all the difference I literally couldnt have done it without him.I hope your having a fab day today and managing to put this sod of a diagnosis to the back of your mind.I know the surgery has different implications for Men and Women but if I can shed light on anything or give support please let me know.
Love Clur x

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14 years 11 months ago #2269 by Jmema
Replied by Jmema on topic Bongs Bubbles & Carpentry Kits!
You know....if I read your posts slowly I usually get them and in between the "jokes" I read words from what I think is a very compassionate, caring person whose heart is as big as his sense of humor and gives some very good advise. You have had your struggles and you seem to be handling them with courage and determination. Here's hoping we all live to be 120. ;)
Best Wishes and Blessings.....Jean

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14 years 11 months ago #2263 by Mike
Replied by Mike on topic Bongs Bubbles & Carpentry Kits!
Dana Farber has an online request form regarding second opinions. I sent it through cyber space and someone will contact us within 24 hours....exclusive of Turkey we should hear something on Friday.

Two weeks ago I finally bought myself one of the Kodak digitals with printer dock and have yet to use it so tomorrow we will break it in for sure! I have twin neices that I watch every weekend and they are my best camera subjects but due to the hustle and bustle of last week I bowed out of my weekly routine. :(

Didn't Olivia Newton John's man go to the store or something and never returned??? Now I hope you aren't suggesting Mr C run away with one of the nurses or something..... :P I have too much time and effort invested in him for him to just leave me solo. My life would be way too boring without him ;)

Happy Turkey Day everyone and give all of your family members an extra hug tomorrow.

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14 years 11 months ago #2262 by Mike
Replied by Mike on topic Bongs Bubbles & Carpentry Kits!

ata girl don't let anything burst our Bubble - remember Blondie and Heart of Glass. Hard nosed, hard assed rock chick she might have been but don't forget she sure stood by her man.

Then look around you - John Wayne had colon cancer for years, Olivia Newton john breast cancer and still leading a full life - Kylie Minogue took a year out for a radical mastectomy and went back on tour this month.

You are doing well and never feel alone, just think of both hands ;)

You can do it - life and soul of the party at Thanksgiving.

If you can eMail me some pictures of you both having a great time.

Greg & Lee

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