Ureteral growth

Hi I am 45 and never smoked in my life. I have had gross hematuria for a number of years that has become much more frequent (now every 3 weeks rather than every 6 months) and has changed in nature from a couple of blood clots to streams of blood in my urine followed by a wrap up of lumps of black and stringy blood clots. I have finally have a CT with contrast on my kidneys and upper tract after a cystoscopy which was negative and they have picked up on the CT a ureteral thickening where the ureter joins the bladder on the left. I spoke to my GP about this and fed her the line 'it can't be serious I have had this for 5 years' her response back was an embarrassed laugh followed by 'don't believe that. It is a slow growing growth'. I am now waiting on a Ureteroscopy (sic) to have a look at it and take a sample for a biopsy. Don't worry I am not asking for medical advice on 'am I dead' just saying hi and learning the art of patience.

Any comments appreciated

Waylands

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Hope the scope and biopsy go well and that no tumor is found.

jj

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Please follow up with this and do not cancel or postpone this. So important to get this taken care of.
best
Browns Crossing

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Hi browns-crossing and jj803 thanks for your response and concern don't worry I won't cancel. I had a lot of tests a few years ago that concentrated on the prostate and ended up clear. At the end of those tests I was told by the oncologist 'I think you have something but I can't find it. Come back if it gets worse'. I move around a lot with my job and at the moment commute 700 miles each way each week to work for the British government so this lack of consistency and getting things arranged has not been easy. My GP has been great and to be honest I have lived with it for a number of years and it is only because I am in a settled relationship and the frequency of the bleeding etc was causing intimate problems in our relationship that I went to a new GP (under duress) and raised it. As I say the GP has been excellent trying to arrange for me to give blood and other samples at surgeries and clinics at the other end of the country. Anyway what is a slight concern is that when I had all these tests a few years ago they never did the IVU/IVP CT which picked something up this time. Since the bleeding got worse I have also had almost consistent pain in my back and loss of blood from my mouth etc along with nausea, fatigue and weight loss of about 5kgs in a fortnight so am pretty eager to get this sorted once and for all



Best wishes Wayland

Ps browns crossing 'is that a weimaraner? I had one a few years ago it was bonkers. I currently have a chocolate lab puppy that is 7 months old and the Weimaraner makes it look sane. The lab is 36kgs in weight and sits on my head as a form of male bonding

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My 60 year old husband had gross hematuria approx. 5 years ago and had a workup with ultrasound, CTscan and they were negative. The hematuria resolved after a few days but would appear again off and on. He ended up with a cysto and that was also negative. For a year or so he had nothing, then off and on for a day or 2 with no other symptoms. These episodes often occured after vigorous activity but not always. In Nov. 2011 it happened again for 2 days and as usual it was a weekend and we couldn't get the urine to the lab while it was bleeding. We were sort of getting used to this but it was also worrisome. Then the week of Christmas it happened and we got the sample to the lab. This time it didn't stop, became painful and very dark. He was diagnosed (Tuesday after Christmas since it was a holiday and all) with UTI and prescribed atibiotic but also we were told to go back for ultrasound and consult with urologist. Urologist ordered CTscan and that showed a filling defect and so he did a ureteroscopy biopsy. Although the dr. was confident it was a low grade tumor, it turned out to be high grade. We went to the cancer urologist and he planned to remove the kidney. In the meantime we decided for 2nd opinion at another cancer center and their pathologist was not sure of the highgrade diagnosis. The dr. there decided to go in for more biopsies via ureteroscopy again. He got lots more tissue and when the diagnosis came in high grade this time he offered the option of chemo first then nephrectomy which is what we are in the process of now.
I am wondering if there are many others out there with similar progression of symptoms. These drs. all say that the bleeding 5 years ago isn't related since the tumor is high grade and it can't have been there that long. We are also told that these tumors usually start out low or high and don't usually change from low to high. Since this isn't too common I guess there aren't a lot of answers out there. In the end it doesn't really matter what it was before I guess. They did the tests and saw nothing but its hard to believe they're not related!

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Hi Nova75,

thanks for your reply and your comments, how is your husband doing? His experience sounds very similar to mine. I have my Urereteroscopy (sic?) booked in for this Monday (30th). Since I have had the CT scan and have been waiting for the procedure, I have started to get lower back pain, bladder pain and spasms when I bend over and pain in my lymph nodes left side of my neck (supraclavicular), as well as the nodes in my groin on the left and on the right side of my neck. I have also lost about 9kgs in just over a month (I can do with losing it to be honest) and to round it off I have night sweats. so quite a mixed bag. I have had a urine cytology test which has come back negative (thankfully) and a number of standard urine tests which show protein and leucocytes in the urine but I have been told I have no infection. I just have to wait to Monday and take it from there. To be honest I am more interested in finding out what is going wrong and then dealing with it. My GP has been great about everything and it has been difficult handling all of this because I work 700 miles away from home and communication and arranging tests has been quite difficult.

best wishes and I hope all is well


take care

Waylands

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Working so far from home sounds SO difficult! You are lucky the doctors can make all kinds of arrangements to get your treatments and all and accomodate your schedule.
Today is the day you are getting your ureteroscopy, so hope you are feeling ok when you read this. After my husand's first time having it, he had so much pain! The second one, done by another dr., caused him no pain afterwards, so hoping you are not having pains from yours. I hope you get some good news from this procedure as well. It is so depressing when you go through tests and they can't give you any information. I am a firm believer in getting more opinions and our doctors all encouraged it.
May 2 my hubby gets his last chemo and I expect it will not be good next weekend. It takes him about a week after to start feeling better. The plan is to remove the kidney 4-6 weeks later, so I guess June. He tries to keep a positive attitude about it because he feels that if the chemo is making him feel so terrible, it must be killing the cancer cells!
Good luck and I hope they find out what is wrong with you finally!

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Hi Nova75,

I hope you are well. You are so right about the pain :), and I never knew it was possible to pass blood clots 'that size'.

the ureteroscopy went well but when they went inside they couldn't see what had been showing up on the CT scan so had a look around and did a bladder wash and that was all that happened. I didn't get to speak to the surgeon which is totally understandable since the guy following on from me was in a pretty bad way and I should hear back from the clinic in four weeks.

To be honest I have spent pretty much all my life confusing the doctors. My mother had Rubella/German Measles when she was carrying me. the standard procedure now is blanket immunisation of girls before they hit puberty and automatic abortion of the foetus on detection of abnormalities. I slipped through the next in the late 60's and when I mention it to most trainee doctors they don't have a clue what I am talking about.

I am 45 in June and when I was being checked out when I was 12 for heart surgery I was told the that by the time I am 50 I will need a kidney transplant it could all be linked into that. I suppose 'my bits' internally are pretty much mixed up and the 'thickening' on the CT could have been a narrowing that they picked up on xray/contrast 30 odd years ago.

I hope your husband copes with the last stage of chemo and I wish him well. I know it is a bit of a cliche but I do believe our attitude drives everything.

best wishes for you both. It is equally as hard being the carer

Waylands

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Waylands,

I found it interesting that your mother had german measles when she was pregnant with you as mine did to. I had a heart ablation for A-V nodal reentry right before my bladder was removed. It does make you wonder if any of that was from in utero. Sad to think babies are being aborted because they might not be born "perfect". Our daughter had a baby last year that was born with spina bifida. Many mothers choose to abort them, also. That was never an option to even consider for her and her husband. I can tell you he is the sweetest baby ever, has a pleasing personality and dermination that will get him far.

Glad your test today went well. Do keep a close eye on things and let us know what you hear from the surgeon.

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Hi Tamlin, how are you doing.

I suppose I am one of the lucky ones. I initially went to a school for disabled children and I remember to this day two who died. I then went to a mainstream school. I was told I should be in a wheelchair and thought 'sod that'. I was told at the age of 12 I had to have heart surgery or would die in a few months. I went in for the surgery and the night before I was meant to go down for the surgery it was cancelled because they discovered I had a rare form of haemophilia. The British Natonal Health Service in 1979 flew a doctor in from Japan to help with the surgery. Up to that point everybody who had this blood disorder (factor 13) had died. The surgeons generally picked it up when they had cut the patient open and by then it was too late. My blood disorder had only been picked up because the hospital lab technicians had gone on strike. When they came back to work they found my blood had decoagulated. Oops.
After the surgery everything went fine until I saw the cardiologist who said I was unemployable and would be lucky to get a job in a bank so again I thought 'sod this' and took up judo. Two years later I was in the national judo squad competing at junior international level. My father was ex army so my college job was a grunt in the British Territorial Army (a weekend warrior) now 20 plus years on I am working for an international consultancy company, As an advisor to the British civil service along with a Masters degree. I wouldn't like to comment on the termination issue but I sometimes think it is the easy option. But Getting this far for me has involved a lot of subterfuge and I won't get a higher security clearance :) and as I say I'm one of the lucky ones

Best wishes

Waylands

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I am glad they found no cancer in the ureter. Wow, you sure have had your share of medical issues! My friend's brother was born in mid 60's and exposed to measles. He is mentally challenged. So you are lucky in that respect.
I hope you are now recovered from the procedure but am surprised you have to wait 4 weeks to hear back from the surgeon! Are they saying anything about all your other problems like weight loss, night sweats? If they warned you may need kidney transplant, perhaps your symptoms are all related to that? Can you get another opinion at another hospital? I guess that is difficult due to your work schedule but it may be worth it if you can fit it in before 4 weeks. Just a thought.
Good luck.

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Hi Nova75,

I hope things are well at home. Sorry in the slight delay in responding. Basically I saw the Urologist under the UK '2 week wait rule for suspected Cancer. He has performed the tests and thankfully come to the conclusion that it is not Cancer (at the end of the ureteroscopy he wrote 'No Active Disease, no TCC' I had to translate this for the nurse. he was operating on someone else who was on the list and was in a much, much worse condition than me)' so I have basically become a routine case for him and go back to the queue of everything else he has to deal with. He is looking at his bit, kidneys, Ureters, Bladder etc and has given the all clear so I suppose for him it is 'job done'. I have found that it appears to be a 'task-oriented' approach of what has to be done rather than holistic but I am delighted with the outcome and have to see what happens next. to be honest it has been a fraught month or two and I would rather take stock at the moment.

I took the dog for a three hour walk yesterday and at the end was bleeding again and during the night but this could have been induced by the walking which was pretty strenuous or a late response to the ureteroscopy so I would like to get things sorted out but yes I am delighted with the negative outcome

best wishes


Waylands

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Wow! A 3 hour walk! I'm impressed you could do such a long walk so soon after all your problems! I think the bleeding could certainly be from that as my husband's bleeding often occured after strenuous activity. Over the past 5 years the bleeding would last a day or 2 then go away for months. It's hard for me to believe that just this past fall, he was walking 5 miles in order to try and lose some weight and get his sugar under control. He kept it up through Christmas and while he was bleeding quite heavily and we thought maybe that was what had caused it. However, that obviously did not actually cause the bleeding he was having. By mid Jan. he was no longer able to walk much at all. He became anemic by March even though the urologist that did the first ureteroscopy said that was unlikely.
Great news that you've got the all clear sign for cancer. Maybe with all you're doing you should take shorter walks for awhile! Good luck with your follow up appointments and I hope they can figure it all out.

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I started this thread rather cocky (to use a British term) I have rapidly been cut down to size in a massive way. I have not been on the board for a week or so and what I will now say wil almost certainly horrify a lot of people and I am very sorry for that but please bear with me and let me explain. I know in response to what I will say people will say 'he does not know what he is saying and does not understand the pain of cancer' but please believe me I have been there. In 1979 I was told I had to have an operation or would die. I was 12 at the time and was also told that this operation had been performed 3 times so far with a 100% failure rate. The night before the operation it was cancelled because in 1979 Britain the lab staff had gone on strike (as usual) however when they came back they found my blood sample had decoagulated. The operation was cancelled and hemophillia was diagnosed. A few months later the operation went ahead and was obviously a success in that I am still breathing. At start of his thread I mentioned that I have had bleeding for a number of years hence the cancer query. To cut a long story short I have factor XIII hemophillia and dont have cancer which in itself is not a problem but basically I have got an appointment within 12 hours (this does not happen in the uk) with a genetic counsellor on Friday morning. The problem is that to have Factor XIII haemophilia both the mother and father have to carry the gene. The chance in the UK of developing it is 1:5,000,000. I don't want to go into details but I know my grandfather was 'abusive' to my mother whom he 'liked' and I have never known my father and My brought me and my siblings up in total isolation from her family. I will leave the question open and wish you all well in your journeys but in a week and a bit I have gone from thinking I had cancer and how i would cope and pay the mortgage to being repulsed by my own existence

Best wishes

Waylands

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Waylands, I am happy to hear you do not have bladder cancer and the problem was from your hemophillia which you already knew you had. You have overcame great odds and are a fighter. I hope you can put the past behind you and look to the future which you can make wonderful.

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