Just Diagnosed Interested in What you were told when you were diagnosed

[Chris333]

I was recently diagnosed and had a terrible experience. I was wondering when you were diagnosed who told you, how were you you told and is there a better way to have been told?

[Larry_HN]

Sorry you had a rough experience. Nobody said the word "cancer" to me which was a bit absurd. Doctor did the cystoscopy, there was a big lump very visible and he said "well, that will have to come out"! He was not unfriendly but a bit distant. Then a very earnest nurse asked me "is there anything you would like to know" and I replied "can I have a biscuit now?" I guess if I had asked I would have got some information, but I was a bit shell-shocked... It was pretty obvious I had a tumour and nobody was going to tell me anything meaningful. All the decent information I got came from intelligent research on the Internet and groups like this. Nine months on, I've had a TURBT and the all-clear. I was pretty well looked after overall once I was in the system, hopefully the same will be true of you. Best of luck.

[Letterhead]

Sorry to hear you had a bad experience. Mine was pretty awful too. I had cystitis and my doctor prescribed antibiotics and said "if I thought it was cancer I'd refer you straight to the hospital" two months later as it hadn't cleared up I was sent for a cystoscopy. I could see a mass and asked if it was a cancer and he said it was. So there I was flat on my back in a very undignified position being given the worst news ever! And with no one with me as my husband was in the waiting room, in fact, I was ushered into a room, sobbing asking for my husband! When he arrived I had to tell him the news myself. Eventually a nurse gave me a form telling me I needed a body scan and they'd send me an appt for the TURBT. I needed more surgery but remained cancer free for 2 years then it came back and Im now having BCG treatment. In hindsight I wish I hadn't been told flat on my back and them telling my husband and myself together. Sorry, it was a bit of a long winded reply! All the best.

[westseajoe]

I will be 71 in november and was diagnosed 2012. Went to my GP first and he ruled out prostate problems and sent me to Urology. Had ultrasound on bladder then a bladder inspection- the chief of staff and my surgeon told me i had some growths/tumors and we scheduled a first surgery. Funny part for me was that i was surprised at how calm i was during the whole ordeal. Went for first surgery, then a second one some time later to make sure he got it all. What i did not know was that the follow up gold standard treatment of bcg was based on how extensive the turmors were/how much he had to remove. He recently told me in some cases the number of bcg treatments are few or even none if the tumor is tiny. Uncomfortable parts were: wearing the cath bag for 3 days afterwards and eliminating after the bcg- boy howdy it felt like peeing razor blades the first time, and the urge to pee after that. I love my surgeon! I am soon approaching the 6th round of bcg- once the 7th is done, i just have to face the bladder inspection once a year. Also, i live alone.

[wsilberstein]

Since I'm a pediatrician, you'd think I'd had more of a clue but... I was treated for years by a urologist, a friend and colleague, for urinary symptoms. He never mentioned cancer even when he did a cytology (which showed sheets of atypical cells but no cancer), and even though I'd had microscopic blood in my urine, the thought never crossed my mind. Finally, I passed a clot, and he did a cystoscopy. As he looked around he said, "it's no more than a grade 1 or 2." I still had no clue that he was thinking cancer. I drove home. My wife asked what happened and I ran into the bathroom desperate to pee yelling back to her "polyps," yet I can't even remember being told that.

3 days later when I went to his office and he told me I had high grade cancer plus carcinoma in situ, it hit me like a ton of bricks. He told me he'd remove the tumors and I'd be fine, but I drove home thinking I was going to die. My brother-in-law, who's an oncologist reassured me.

That was 16.5 years ago. I didn't die. But there's plenty more to the story. Cancer sucks!

[McLabhran]

Doctors these days rarely have bedside manners as they say. Some can be brutal in their response while others don't think they have to impart information or it occurs to them to tell you. Strange thinking. Many folks who are told often go into shell shock or think death immediately therefore panic sets in as they dont know what to do. We all respond differently. For me, I was angry as I felt this did not belong in me and had no right and commanded it out of my system. My anger propelled me to arm myself or should I say, educate myself in terms of the type cancer, types of treatments (holistic), foods, beverages and health supplements to keep myself in the best health I can. I try to take a holistic approach - mind, body, emotion and spiritually. It is not an easy journey and nothing is ever guaranteed. Just do the best you can.

[McLabhran]

I do want to say that there is test that can be done to detect early bladder cancer. It is called FISH test. Flourescence in situ hybridization. Check medscape.com/viewarticle/73018

Or simply research FISH test for bladder cancer. It is the most curable cancer. Dont let the doctor frighten you or poo poo any alternative treatments. Look at everything.

[wsilberstein in reply to McLabhran]

FISH is an excellent test. I have it done at every follow up. However, it is not foolproof. Even when I had high grade cancer + CIS my FISH was negative.

[McLabhran in reply to wsilberstein]

That you for sharing that. I, too, was diagnosed with high grade. I have the cyto and FISH test done along with the usual cystoscopy. My follow ups are every 3 months. I am in the clear, thank God! It is constant monitoring. What bugs me, is that you cannot see the darn thing with your naked eye, and yet, it can take you down completely! What's wrong with the picture? Gee weez.

[wsilberstein in reply to McLabhran]

That's true that you can't see it, but that could be said about so many illnesses. That's what keeps us doctors on our toes. It's not always easy to make a diagnosis. I always worry about what I might have missed

[Marion62]

I was given a cystoscopy 7 weeks after consultation just to check all was well.

It was a complete shock to be told there and then thay I may have cancer. It had never been suspected. I was told to make an appointment for a CT scan to check it hadn´t spread and that I would be called for a biopsy within a month. I was on my own and went home in a complete daze - on the bus.

Tumour was removed at biopsy which later confirmed cancer low grade non invasive. I was not given a chemo wash and when I asked at follow up why not, I was told they still did not suspect cancer.

I am nowawaiting an appointment for my next cystoscopy.

[McLabhran in reply to Marion62]

I think you ought to seek a second opinion. Granted not all tumours are cancerous. Something as awful as cancer should not be "assumed" all is okay. Not to scare, but important to educate oneself as much as possible so you know more about what is going on in one's body. Here is a little reading, if you wish.

cancer.org/cancer/bladder-c...

[come-unto_Me]

After the Tumor was removed in December2015, I met with the Urology consultant in January 2016. Without any warning he came straight out with the Biopsy results, they were unable to get all the Tumor as it had gone through the bladder wall into the muscle and the Cancer was aggressive and I was being referred to Oncology, we were so shocked we got up and left, the nurse came out with us to make sure we were ok. The Oncologist was a very caring Consultant he took time to explain the issues, he confirmed the Cancer to be the aggressive kind and had entered the blood stream and there was a strong possibility I had secondaries, he started me on Radiotherapy on the bladder when this was completed I was scanned which confirmed I had secondaries on the lungs. The Oncologist has treated me with great tenderness, taking time to explain everything unlike the Urology department, I have a Cathater since December 2015 and have experienced some terrible moments, it is hard to believe there is such a difference with the treatment I receive. I am so thankful that my main carer is the Oncologist, my cancer is stable, I had a scan last Wednesday and now waiting for the results. I have a very positive attitude for future and my faith continues to bring peace into my life.