Need advice/help for Mom please

14 years 9 months ago #921 by pipersmama
Need advice/help for Mom please was created by pipersmama
Hi Everyone,
I've been reading the forum for several days now and decided to join. Here's my story.

About 3 weeks ago my 67 year old Mom went to urgent care for blood in her urine. They gave her antibiotics for an infection. The bleeding came back about a week later and her general practioner gave her a different antibiotic. Please note that the bleeding is sporadic, not everytime she urinates. After the bleedin came back again, her general practioner referred her to a urologist. Can you believe they can't see her until September! I can't believe they would let someone go on that long with this problem.

Anyway, she made an appointment with a urologist in Syracuse, NY, which is a larger city,1 hour away. She went yesterday for a consult and liked him very much. He has her scheduled for a CAT scan on Wednesday and another appointment with him on August 1 when he will perform a cystoscopy to look inside the bladder. He said there is a chance it is bladder cancer. She feels fine, no pains and her only symptom is the blood.

Here is my BIG problem and why I'm sick with worry.

My father passed away from bladder cancer 7 years ago. He was diagnosed 12 years ago and the tumors were contained in his bladder. He had them removed and they came back 3 months later. They were removed and followed up with BCG. He had remained clear after that for almost 5 years. When the transitional cell carcinoma returned it showed up in his kidney and liver. The bladder was still clear. We were in shock. He had been given a clean bill of health by his urologist in February and now in June he has metastatic transitional cell carcinoma. He had MVAC therapy and a nephrostomy tube and wasn't given much hope. I was fed up with the urologist here that it had not been caught sooner, so we travelled to Dana Farber in Boston to get a second opinion on his treatment. They agreed with the oncologist here. The MVAC treatment got rid of the tumor in his kidney, but the liver tumors kept growing. He passed away 6 months after being diagnosed in December 1998 at 61 years old.

I'm so afraid that this will happen to my Mother too. What if it has already metastized? Is that possible being she went to the doctor at the first sign of blood in her urine? I know I'm jumping the gun, but having been through this and playing the waiting game for tests is just making me physically and mentally ill. I needed to seek counseling during the end of my father's illness and after his death and I'm still not the same.

I'm sorry to go on and on, but I'm just looking for some help from some of you that have been there.

Thank you

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14 years 9 months ago #922 by Rosemary
Replied by Rosemary on topic Need advice/help for Mom please
My dear,
You must take this one step at a time. Yes, according to the symptoms it is possible that she has bladder cancer. But do not let your mind spiral out of control. You must be brave for your Mother. You obviously love her and that is what she needs right now. You are right to post here, and talk out your fears.
You do not know the outcome yet...it would be easy, in your case to fear the worst, having gone through this once...but try to get your mind under control, so that you can be a support for your Mother.

Good luck, dear....pray hard...

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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14 years 9 months ago #923 by pipersmama
Replied by pipersmama on topic Need advice/help for Mom please
Thank you for your kind words of encouragement. I try so hard to have a positive outlook but it seems as if the worst always happens. I will try my hardest to take it day by day.

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14 years 9 months ago #924 by rentanag
Replied by rentanag on topic Need advice/help for Mom please
Piper,

It's great that you've been reading here to help yourself and your Mother to understand how this works, although as many of us know everyone's situation is different.  But knowing you have somewhere to turn to get support from people who have gone through what your mother may be about to go through has got to give you some comfort.  We are a wonderful bunch!!! HaHa!!!
I know you're worried about the wait, but let me say to you that this time from her first symptom to her first cystoscopy is not that long.  I know it feels like a long time and so will the days to come depending what the ct scan and the cystoscopy show (hopefully they'll be negative--although that could suggest further tests need to be done).
Let me share with you a little of my story and perhaps it will help you rest a little easier, okay?  In late June or early July 2003 I passed urine that was red, the first time the red only stayed for one or two voidings.  It surprized me a little and I looked it up in my Merck's Manual, and what I found there allowed me to believe it was red dye from some foods I had been eating at that time that contained a lot of red dye.  There was a part where I read that food dyes can pass through into the urine and one of the worst for that was red dye, so I was sure that was what it was.  Over the next five / six months I had about six or seven of those episodes, but each time it was gone again after a couple voidings at most.  In addition to that I had no other symptoms, no fever, no pain of any kind so I just knew it was nothing to worry about.  On 14 December 2003 I passed not just red urine, but it had large clots in it, and this I knew was not related to red dye.  I knew for a fact now that this was blood and I knew I'd be calling the doctor in the morning.
I know this sounds like I'm building up to something just horrible, and depending on one's perspective some might consider that to be true.  But let me reassure you before I go on to briefly (hopefully) finish my story that I am doing very well, and I have been cancer free since 17 February 2004.  That's the day I had my surgery.
Let me get back to my story where I'm seeing my primary doctor, and he orders a sonogram of my abdomen and appointment with  urologist but not until 29 December 2003.  The sonogram was 22 December and I learned on 24 December (I actually called my doctor's office for the results) that I did have a tumor in my bladder, but my doctor told me there was every possibility that it was a superficial cancer or even possibly not cancer at all.  I saw the urologist on 29 December and had a cystoscopy the same day, and when he finished I asked to see the image on the screen (he showed me), and so I asked him what it was, and he said it was definately malignant.  We scheduled a TURBT for 15 January 2004, and the pathology report showed transitional cell carcinoma that was deep muscle invasive and was also high grade (fast growing).  But even for all that scarry information plus a ct scan from two days prior to the TURBT which showed an enlarged lymph node in my pelvis, it was still another month before I actually had my surgery.  That time was spent researching my options, meeting with an oncologist who wanted me to have chemotherapy prior to any surgical procedure, something I didn't want to do for several reasons.  I discussed my feelings about this with another urologist, how I wanted to start with removing the lymph nodes and checking them for any signs of cancer.  If there was cancer present we would stop and do chemo after recouperating from that procedure, but if they were negative we would continue on with a radical cystectomy.  This urologist agreed that it would be just fine to go about it the way I wanted to and my urologist agreed as well.  So that is what we did and after the nodes were negative they removed my bladder and then before deciding what diversion would be done all the other organs that were removed were also checked for the presence of any cancer.  The ends of both ureters, the end of the urethra closest to the bladder, the uterus, the ovaries and fallopian tubes were all studied under frozen section and they were all negative for cancer cells.  It was decided then that I would be fortunate enough to be able to be given an ileal orthotopic neobladder, and although there were trying times in the beginning due to a problem with incontinence I consider myself fortunate to be where I am today.
Now let me say to you that even though your mother has blood in her urine it doesn't mean that she'll necessarily need what I needed to have done even if she is diagnosed with bladder cancer.  In addition to that the testing that's done these days can be much more informative, and what I'm referring to is if the doctor felt it was necessary he might order a PET CT scan.  That specialized scan (which is fairly new) can actually tell the difference between benign tissue and malignant tissue, and it can also show this at the very earliest stages of cells changing to their becoming cancerous.
This particular scan though is not something they would routinely order for a patient in the early stages of diagnosis, but perhaps if there is reason to suspect a need because of results of previous studies.  All of this I've written is for me to now write again that this doesn't have to mean the worst, and believe it or not I want you to think positive about the results of your Mother's upcoming tests.  But even if she is diagnosed with bladder cancer there's every reason to believe that she will do just fine.  I know because I've been there.
Something I've learned to do that helps relieve stress is to stand up, now take in a really deep breath and then to let out all the air very slowly.  Do this several times, and you'll be surprised ar how it can help you relax.  It also helps your immune system to work better, which is wonderful for your own health as well.
Keep us updated on your Mother's situation, and know we've got you both in our prayers.

God Bless,

Lou

Ps.  Have your Mom do the deep breathing too, it will help her immune system to do its job better as well.

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14 years 9 months ago #925 by Rosie
Replied by Rosie on topic Need advice/help for Mom please
Piper,

It is understandble that you would be worried about your mom's prognosis after experiencing the very difficult process and death of your dad from cancer but not all bladder cancers are invasive, not all bladder cancers spread to other parts of the body and not all "bladder" cancers originate in the bladder. You did not state the type, grade or stage of your father's bladder cancer at original dianogsis, nor if he had catscans or MRI's prior to or while being treated for bladder cancer. The type, grade and stage of the initial tumor differs greatly in b/c patients as does the treatment and prognosis. Know the type, grade and stage of your father's initial pathology report so that comparison's can be made when your mom's diagnosis is stated. I had bloody urine on and off for 5 years before my 4 cm papillary TCC was discovered in 2000. Even though the tumor was quite large and the lack of discovery or treamtnet was for at least 5 years, it was a low grade, superficial,papillary transitional cell carcinoma. I have had 4 recurrences of low grade, papillary TA TCC which are are "nuisance" but not life threatening nor a bladder removal threat according to the great amount of research I have done and informing myself on my own b/c history. Of course, it is still a concern but no longer one that I fixate on each day. Try to relax and know that your father's bladder history need not be your mother's bladder history.

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14 years 9 months ago #927 by pipersmama
Replied by pipersmama on topic Need advice/help for Mom please
Gosh, you guys are all wonderful. Thank you for sharing with me and reminding me that this doesn't have to be a death sentence. I will keep you all posted and re-read your posts when I'm feeling scared. God bless you all.

Liz

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