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Not diagnosed for almost a year.
I’ve been wanting to vent on my personal story but I didn’t want to create yet another topic thread focused on my problems. But then I decided my story may help someone else, so here it goes…
Let me begin by saying I’m in my late 50s and I smoke cigarettes. (I was once a pack a day smoker but for the last 15 years or so I have reduced it to about a half a pack a day.)
I first urinated blood in September of 2015. I knew that that wasn’t good. It wasn’t just a trace amount, my urine was fire engine red! I called my doctor (general practitioner) immediately and made an appointment. I saw my doctor the next day or so and he sent me to have my urine tested (I suppose to see if there was blood in it, maybe other numbers?)
I never heard back from my doctor about my test results. I started researching my condition and most reputable websites (Mayo Clinic, etc.) all said (paraphrasing) that in most cases blood in urine in not cancer and often times doctors cannot determine the exact cause.
I never heard back from my doctor about my test and so I figured I was okay. I continued to have blood in my urine intermittingly and then it went away.
I saw my doctor again for a regular appointment in February, 2016. I asked him how my test went and he said everything looked okay. I told him what I read on the Internet and said something like, “I guess we just don’t know why I had blood in my urine” and he agreed. That was the end of that.
The blood in my urine returned (and, again, it was often times fire engine red). I was a little concerned but since my doctor said I was okay, I didn’t worry about it. Finally a huge clot came out while I was urinating and soon the blood in urine stopped. I figured that I must have had some kind of kidney stone or infection or something and that was the problem all along.
The blood returned in late spring of 2016. I knew this was something despite what my doctor’s test showed. I had a regular appointment with my doctor scheduled so I brought it up to him then. I said that I was still urinating blood and he got a very concerned look on his face and said “what?” I reminded him that I came to him with the same problem in the past and he said he didn’t remember it. He said (exact words), “I am sending you to a urologist to have that checked. I don’t want to scare you but it could be cancer”. And, low and behold, it was cancer (two tumors, one very large T1HG – 6 cm x 6 cm x 1.5 cm).
I have to say that I feel a little bit like a fool and like I was fooled by my doctor. I know I should have called him again when I began urinating blood the second time. But I figured the test results from the first episode showed no problems so this was just one of those things that had no explanation.
But I also think my doctor was lackadaisical about my condition. He was presented with a man in his late 50’s who was a smoker and had gross hematuria (visible blood in urine) and he never told me come back if it returns or anything like that after the initial test.
I went back to my doctor after I was diagnosed to tell him that I had cancer (he already knew since the urologist sent him my x-ray results). We reviewed my case. He said that he did everything right when he sent me to have my urine tested. I think, legally speaking, he did. But, again, I think he was negligent (maybe not legally speaking) for not sending me to a urologist or, at the least, telling me to return to him if the blood returned.
I don’t know if my tumor would have been smaller had we found it sooner (I am guessing it would have been) and thank goodness my cancer hadn’t spread farther than it did, but, as you all know I am not out of the woods by a long shot. So, I have to admit that I harbor some resentment against myself and my doctor. I am going a little easy on myself because I was operating on the knowledge I had at the time (i.e., test results showed no problems and doc confirmed that sometimes they don’t know why there is blood in urine). And, while I don’t think I have any grounds to sue my doctor (he did send me to have my urine tested), needless to say, I think I will be looking for a new general practitioner.
p.s. I have stopped smoking. It may be a little late but I know it’s never too late and, besides, research shows that continuing smoking after being diagnosed could mean a great chance of recurrence.
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!6 Replies-
Thanks for replies.
FYI – I’m using my real name now. I was using a nickname but then I realized that I had nothing to hide.
Thanks.
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
Duplicate.
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
These kinds of stories are not unusual ….. unfortunately.
There are all sorts of GP’s pit there who are wonderful DR’s and they lose sight of how
serious these symptoms can be. Sure, most times it is nothing. But what is the cost or harm in using the scope. It seems pretty quick and easy to me (Yes I laugh about the size of the Brownie camera going in there)
But blood comes from somewhere and there is usually a reason for it.My story is one of quick thinking on my GP’s part.
I was in for an annual physical for my licence. We usually yuck it up as we have for the past 39 years. The urine test came back with trace blood. The laughter stopped and the very next day I was in for an ultrasound…… And two days later I was at the urologist’s office having a cystoscope and watching two tumors in my bladder.Never saw blood….. Never had a single symptom…. Just a good GP
Now that you know…. don’t let anyone make a passive attitude of your case. Take charge! Find the BEST Dr’s and Get over this disease.
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]
John,
We have a similar story. I still can’t believe that Dr’s Can be so laxidazical when they may hold your life in their hands.
My husband went for yearly physical. This year he asked for a copy of his labs which he has never done in the past. Blood was 2+occult.
His doc called. said labs look fine!! When he questioned him regarding blood doc said “. For a man your age this is normal”. WHAT??
Sometimes my husbands labs would be a little off here and there and we were told it was because of having only one kidney. He lost one in an accident long ago. But blood???
I got on phone and argued with the doc… said ok we will do another urine. Same results ! Doc still
Insisted it meant nothing… but then my husband started to have symptoms like we have with UTI’S shortly after 2nd labs. Now doc says ” well if it will make you feel better I will refer to urologist. ”
So we schedule for scope to see what’s going on… urologist cancels appointment..not going to be in office that day.. schedule is out 3 weeks later.. in meantime send him for Ct scan.. now they think they see something on kidney. So they schedule 2 MRI’s one with dye one without…
At this point no-one says how bad this can be for a person with one kidney..
Well they see nothing on kidney but do see bladder issue… finally visual scope ( which should have been done 1st). Dr. sees a polyp and suspicious growth. So we schedule a biopsy..
We are told the suspicious growth is the problem.. bladder wall looks fine .. doc is describing what we thought would be 6 weeks of meds jnjected into the bladder till he gets to the …BUT… cancer cells in the pockets of the blood vessels..
We were in shock and still do not know how much this will affect the outcome… 6 months .. starting with chemo and then bladder removal..
Just explaining this I feel like I want to throw up!!!
We go back to GP for pre physical and I explain how upset we are that he poo-pooed the blood in urine…
his explanation…: ”
I can have 100 men come in here coughing-one wife will insist on an x-ray and we find lung cancer. The other 99 are fine. We can’t send everyone for all these expensive tests because they have a cough”
Am I crazy or is he? OMG how would he like to be that one man and why does his wife have to insist? Beside the fact we were talking about blood… not cough!!!
I don’t know who to trust anymore… would that 3 month delay have made a difference.? Of course they will tell you NO!’
We have appointment with oncologist this coming Tues. it has been hinted with one kidney chemo
May not be an option. To bad they did those MRI”s and. Ct scan before the visual .. as that gave them all the info they needed..
Thanks dani.
I’ve since gone to Johns Hopkins and the nurse there told me that the amount of time between my first seeing blood in urine until the day they removed the tumor (it turns out it was just one large one) is about standard, at least for men. She said the doctor did the normal tests and while he could have told me to come back if the blood returned, the fact that he didn’t isn’t beyond the pale with this sort of thing. Many doctors will give antibiotics and send you on your way, the nurse said.
But the lesson I am passing on to others is if you see blood in urine it is not normal! No way, no how!
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto on June 30, 2024, cancer free!
John McC, I just want to thank you for sharing your story. I too went to my primary care physician January of 2016 because I had some bright red blood a few times when urinating. She did a urinalysis in the office and a pap smear, both of which were negative. Since that time, I have had no other visible blood or any other symptom. However, while visiting my son in another city in August, I woke up one morning with a pain in my right lower quadrant that did not go away. Thinking maybe appendicitis or maybe hernia, I went to the ER where the ER doctor recommended a CT which showed a mass arising from the left (pain was on the right) lateral bladder wall measuring 4.4 x 3.8 cm. The ER doctor recommended I see a urologist right away. I was on the phone the first thing Monday morning with my primary care doctor who referred me to a local urologist who performed a cystoscopy in her office on Friday morning. I was able to see the mass on the screen myself. This doctor ordered a CT urogram which was performed and showed no metastasis to any other organs, but the measurements on this CT were even greater than on the first unenhanced CT. Between the cystoscopy in the office and the CT urogram I called this doctor with some questions and she did not get back to me until 8 days later when she called with the results of the urogram. She had scheduled TURBT, but I cancelled it because I just did not feel comfortable with her care for several reasons which I won’t go in to. At any rate, I am scheduled for a consult with another urologist here in town on Friday morning and hopefully can get this taken care of.
I definitely agree with you that your doctor was negligent. When a doctor tells you all is clear, I think most of us would take that at face value so don’t be too hard on yourself. I certainly accepted what my doctor said and I think what she did was probably standard of care for the symptoms I showed at the time and then I had no further symptoms. Still have no symptoms at all.
Good for you to quit smoking. That can’t be an easy thing to do, but as you know, it is the best thing for you.
I hope you will keep us posted as you go along. I will be hoping for the best for you.
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