A Long Row to Hoe

14 years 1 month ago #4888 by artsygal
A Long Row to Hoe was created by artsygal
My Grandmother often used this term "A long row to hoe " when hard times were ahead. I felt like this would be appropriate for what my husband (age 58) and I are facing. He had a CT scan which revealed a 5 cm. growth on the left side of his bladder that extends 2.5 cm into his ureter. The radiologist report listed it as likely TCC. We went to the Urologist on Tuesday of this week and have been scheduled for a peek and poke on the 20th.

This website has been a comfort to me as I have read the posts of those who are dealing with the procedures and the loved ones of those who are trying to cope. I have read everything that I can get my hands on and find on the internet. I want to be completley informed as we start this journey. My husband is apprehensive and wants to wait until we have it in writing. I think that this is normal and I want to be as supportive as possible. I also want to be prepared for all the possiblities that arise. I find myself having to be strong for him, our children and our family.

My concern is the growth into the ureter. We have been advised that if the test is positive for TCC, they may have to take the bladder, ureter and the kidney, however, all of this will be discussed after the pathology report. I an anxious to hear from those of you who may have had a growth that extended into the ureter. I don't know if this is rare since I am having trouble finding case histories that list information involving the ureter.

Thank you for your courage and your willingness to share your feelings and knowledge. I know that this will help us as all of the events unfold in the next few weeks. I do know that the things that were important to me last week are totally insignificant this week.

Again, thank you from the bottom of my heart.

"What lies behind us or what lies before us are tiny matters, compared to what lies within us." Ralph Waldo Emerson

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14 years 1 month ago #4912 by wendy
Replied by wendy on topic A Long Row to Hoe
Hi,

Sorry we had to meet under these circumstances, but welcome here. Upper tract TCC is not common, I think the stats say something like 5% of diagnoses, but there are a few people active on the forum who have had it or care about someone who does. There are quite a few folks active on the email list who have been through it all, too.

Surgery is the most often road traveled, like your husband's doctor already said. I know a bunch of folks who have been there and are doing fine. The size of your husband's tumor doesn't sound overly large, it may well be contained with the urinary tract, and that is the most important thing at this time.

Your husband is probably right, that it won't help much to scour the internet, and it's a sign of your love that you're the one out here doing it, I know how terrifying it all is in the beginning of such a journey. I've been both caregiver and patient, straddled the fence so to speak, and I think cancer is harder for the caregiver than going through it yourself. You sound very strong, but I know the stress of this all takes a huge toll so please be careful and take care of yourself as well.

Maybe there is something to be said about waiting for a written diagnosis before looking for info...but there's also something to be said for having some knowledge about all the possible options as well.

We have a section for those with upper tract TCC, to help make it easier to connect, so once you have a firm dx, maybe it would be a good idea to post in that section.

Please keep in touch, and I wish you nothing but the best with this all>
Wendy

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14 years 1 month ago #4916 by artsygal
Replied by artsygal on topic A Long Row to Hoe
Thank you for your reply and encouragement Wendy. The odd thing is that the growth is in his lower tract and not his upper. It is one mass growing 2.5 cm on the bladder and extending 2.5 cm into his ureter. Our doctor said that they would have to determine if it was coming from the kidney to the bladder or from the bladder to the kidney. This fact would determine whether or not the kidney would have to be removed.

There is even less information about lower tract than upper. I will still continue to look. I am not allowing the information to upset me. I am letting it educate me to all the possibilities. When he delivers the report I want to know exactly what he is talking about. I have made a notebook and have printed the helpful pages of terms and abbreviations. I have also started a journal to express my feelings. Oddly, the caregiver often has no one to talk to. I can't express my concerns to our children or our family. I don't want to frighten them. I am glad that I can talk with all of you here. I will join one of the special groups after the path report.

Again, thank you for your support.

Ruth




"What lies behind us or what lies before us are tiny matters, compared to what lies within us." Ralph Waldo Emerson

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14 years 1 month ago #4917 by Mike
Replied by Mike on topic A Long Row to Hoe
Artsygal I am the man you want to talk to on this topic cause I been there.. My tumor was growing at the top of bladder and also into the ureter and was on the large size and muscle invassive. What they did when I had my TUR done they put a Cath in to try and open up the left ureter and get my left kidney functioning sice this was where the blockage was. I did have one set back later that night one of the residents came in and said I had to go back in in OR in the morning because the Cath had slipped and fell out-unfortunate but things happen. This time they used what they called a J-Stent and this did the job. My kidney is fine and dandy and working.

Now who is your Dr here and why is he talking of taking kidney out at this point is there any medical findings that the kidney is not working ????? Seems to me this tumor is very similar to mine but smaller so it is growing from the bladder and extending into the ureter from the bladder not the other way around dear. So yes you need to get the ureter opened so the kidney is working or then you will have a problem. Did this Dr mention this to you putting in a stent to open ureter.

Where is your husband getting treated at and am I missing something here. I'm no Dr but as you can see from my experience with this problem it was lower tract. And upper and lower tract never entered the picture first I have heard of this. I don't think they mentioned this cause it was quite obvious it was lower tract so this never came up.

At this point in all honesty Artsygal I be looking a second opinion here cause I personally don't like some of the things that this Dr has said to you, that's just my opinion. Best Of Luck, Joe

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14 years 4 weeks ago #4933 by wendy
Replied by wendy on topic A Long Row to Hoe
Hi,

Joe is absolutely right to suggest a second opinion on things before committing to a path, so that is something you could consider.

You really don't have anyone you can honestly talk to? That's not good. Keep your journal and take those notes. It will help in more ways than one.

Best,
Wendy

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14 years 4 weeks ago #4946 by artsygal
Replied by artsygal on topic A Long Row to Hoe
Since we don't have a firm diagnosis yet and only a cat scan to go by, I think he was giving us a best case, worse case scenario. I don't think he wanted to hit us with everything at one time. When we get a diagnosis we will plan a path of treatment. If we don't like what he says, we will get a second opinion.

Joe, if you don’t mind me asking, how long ago did you find out and when did you have the procedure? Did they just remove the growth? It is good to know that there are other options and that there are people out there doing well after going through something like this.

Thank you for your replies Joe and Wendy, it is good to hear from you.

Ruth


"What lies behind us or what lies before us are tiny matters, compared to what lies within us." Ralph Waldo Emerson

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