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Again and again and again

4 years 3 weeks ago #48975 by RDnKY
Hello again,

My husband had his bladder, ureter, and prostate removed shortly after I first posted two years ago. All of his check-ups have been excellent, with no signs that the cancer has returned. Since the surgery he has had problems with debilitating chills and he had a hernia with the intestines poking out by his stoma, otherwise his recovery has been good.

About three weeks ago he got infected with Rocky Mountain Spotted Fever (damned ticks!), which was quickly and effectively treated with antibiotics. Shortly after he was done with the medication, he started having pain in his hips and back, and this morning he vomited after two bites of breakfast. We figured that the RMSF was back, so he went to his family practitioner for help. Blood tests found no evidence of infection, so they did a CT scan which showed enlarged lymph nodes in his torso. The MD thinks that this might be evidence that the bladder cancer metasticized. I am hoping that they are enlarged due to the infection even though it is completely gone. His MD is going to consult with Dr. Chang at Vanderbilt, but she feels pretty sure that it is time to see an oncologist.

I assume that chemotherapy is what happens next, if indeed the cancer has returned. Any words of wisdom about chemo and what to expect?

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6 years 1 week ago - 6 years 1 week ago #45049 by teresa56
Hello again,

Thank you for your sensitivity. It was very thoughtful of you to consider how it would affect me by posting. For the most part I am very positive, but I do find that if I read too much it does indeed begin to affect me adversely.

The thing is--I don't feel sick. So it's easy to just keep on keeping on. But I have become very careful about how much I take on, being sure I am resting and NOT STRESSING.

Yes, I have read quite widely about negative emotions and how they affect our health. It's funny how you could read and think that all is well....until something like this happens and then you have to sit back and really have a look at your life, your relationships and your feelings, etc. It's been a whole new eye-opener, believe me.

I have finally gotten part of my story up on my blog. I thought I was posting in my "biography" but it just went directly to the blog. It's only Part 1--so far I've written only up until my "big" surgery (my nephro-ureterectomy). I haven't gotten to the bladder cancer part. Soon.

I just had #3 BCG yesterday. So far I've been handling it pretty good. Yes, I know all the stories about how it gets worse. The worst so far for me has just been the fatigue. I woke up with a headache last night but not sure if it was the BCG or something else. These things are so subjective.

Anyway....yes, let's keep in touch. I am praying for your husband. God is able--even when all else fails!

Is your husband on any alternative treatments to help out? Nutritionally?
He seriously might want to set aside the ice-cream for a while....and all sugar. It's hard--but he can do it.



I'll keep you posted as to my progress with the BCG. I finish the induction phase on July 31st and then need to wait 6 weeks before my cystoscopy. It seems like in the U.S. they check about 2 weeks later. I mentioned that to my urologist, but he said here they wait 6 weeks. Then my maintenance phase would begin another 6 weeks after that (3 months after Induction BCG).

Past my bedtime. Talk soon.
Teresa

Radical Laproscopic Nephro-Ureterectomy: 05/18/12
TURBT: 01/14/13 (dx: CIS, high grade)
TURBT: 05/28/13 (dx: pT1, papillary urothelial carcinoma, & high grade & CIS)
BCG: Induction Phase completed: 07/31/13

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6 years 1 week ago #45048 by RDnKY
Hi Teresa!

I read your post last week and wanted to reply given that my husband's experience seems so similar. But, I was afraid that I would be discouraging to you so I chose not to write. I am so glad that you read my post and responded. Let's just hope that you have more success with the BCG treatment than he did.

I know of a good amount of research that shows that holding in negative emotions increases vulnerability to cancer. If you are constantly caring for others and never letting them know that they are asking for too much and that you feel frustrated or angry about that, it just might have been one factor in making you vulnerable to developing cancer. But, who knows?

I would love to hear more about your history. It looks like you have been living with this for a while longer than we have, so any information would be a help to me.

Thanks so much for responding!
The following user(s) said Thank You: teresa56

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6 years 1 week ago - 6 years 1 week ago #45043 by teresa56
Greetings from Canada!

Your message interested me.....I just posted last week asking if anyone else had kidney cancer BEFORE bladder cancer. That's my story too.
My journey began a year before your husband's....in Nov. 2011 and now I am in the middle of BCG treatments for bladder cancer. I too have been a very healthy individual with no known risk factors. My first urologist kind of scratched his head and said "you just don't fit the profile!" I was only 55 when I was first diagnosed, female, non-smoker, went to the gym, very active, ate very healthy AND I'm in the natural health and wellness field.

I have since discovered, like we all know....no one is immune. I went to an Integrative Cancer Centre last year (Naturopaths who work with oncology patients and their doctors), and I was saying how I didn't understand how this could happen.....I was doing all the right things. My naturopath responded by saying "Because of the nature of our clinic (naturopaths) probably 95% of our patients say the same thing!"

There are SO many factors involved. I have come to recognize that stress is probably the biggest issue for me. I was just living with stress all the time. That is the one area I have tried to work on big time! Learning to set boundaries, learning to say "no" to people (even family), etc.

My diagnosis is also "invasive" and "high grade". But I am looking forward to being not only a survivor but a THRIVER!!! Believe me, I know your fear....esp. like you said, with only one remaining kidney. Stay positive!
Be encouraged! You are not alone!
If you would like to know more of my story I would be glad to share it--just didn't want to bore you. I did begin to write my "history" on my profile, but I don't see it posted yet.

Looking to hear good news!
Sending hugs and prayers too!
Teresa

Radical Laproscopic Nephro-Ureterectomy: 05/18/12
TURBT: 01/14/13 (dx: CIS, high grade)
TURBT: 05/28/13 (dx: pT1, papillary urothelial carcinoma, & high grade & CIS)
BCG: Induction Phase completed: 07/31/13

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6 years 1 week ago #45037 by RDnKY
Thanks George!

We are both dreading and looking forward to meeting with Dr. Chang next week. I've been doing a lot of Internet research and found an excellent article from Stanford University that has a small discussion about bladder cancer that is noninvasive yet very aggressive, which is what it seems like my husband has. The article helped to make me feel less hopeless about the situation, though it looks like my husband might have to have his bladder removed, which is a true nightmare to even think about. I am so amazed by the upbeat spirit of everyone on this site. You guys make something as crazy as having your bladder removed seem downright doable, which is exactly what we need to see! :-)

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6 years 1 week ago #45035 by GKLINE
RD

I had to chime in and give you a pat on the back (virtually) and say hello from another survivor. Your husband will join us.

My wife and I found that we made a great team beating cancer, and you and your husband sound like a good team too.

I know what a blow the news must have given you. But you are troopers, and I can already see that you are bouncing back from being floored initially.

You are in the right hands, at the right hospital, with the right Dr.

Trust them...... Take charge of yourself and your husband's health. Ask any question that comes to mind..... And don't take any fuzzy answers.

Good Luck
George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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