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Father's diagnosis

rebeccamb
Posts: 1
Joined: Jul 2015

Hey guys
Really great to have somewhere to talk and I hope I can really get something from this. My father Is 60 years old. In great shape and always well . One month ago he started to pass clots in his urine and was reffered to a urologist.
He was admitted and had a ct scan and a scope done. They found a polyp on his bladder which was removed and knew immediately it was malignant . We went home and we're told to come back in two weeks. He advised that 4/5 times it has not progressed past the lining.
Last week we went in for results. He said although it came back as non invasive his ct scan showed bladder wall thickening and they think it was a problem with the sample and it has muscle invaded. It is on the cuff of his bladder blocking his ureter we knew this as they could not get a stent into his kidney as he had very bad hydrophenosis and had to go in from the side.
We were then told to wait for an on ocologist appt
We went today and he said it is 5cm tumour and is starting to go up his ureter . He said the lymph node close by is enlarged and is suspicious but not verified as involved and if it was it was the only one . It also came back high grade he said his treatment was 6 rounds of mvac followed by removal of his kidney and the cuff of his bladder.
Fortunately we have never had a history of cancer in our family but also it means we have no idea what we aare dealing with. I have no idea where we stand of what to expect .
He did said the treatment was definitive and he felt he could be cured but has anyone had a kidney removal or could tell me more about mvac ? My dad is pretty old school and stoic about it all and we are all falling apart he also has no idea how to get on the Internet so would love to give him more info first hand .
Any information or interpretation of stage of this would be amazing

 

This is the diagnosis exactly we were written and given

"60 year old gentleman presented with frank haematuria. He was discussed in MDT meeting last week. I resected a large 5cm tumour from his bladder and this has confirmed high grade disease with no muscle invasion. His ct scan unfortuntately shows a thick walled bladder on the right hand side with a tumour extending into his distal right part of the ureter. He has significant right sided hydronephosis and this has been stented. There is also a small right sided external iliac node in question. Our current plan is so offer him a course of chemotherapy MVAC followed by definitive surgery. I discussed with him today about a nephrourecterectomy and the possibility of further bladder surgery. I will need to change his stent in approx two months and I will make arrangement to do this. We are recommending neoadjuvant chemotherapy for him."

 

any feedback at all would be great we are at a loss and so terrified

red750's picture
red750
Posts: 10
Joined: May 2015

Hi Rebecca,

I can't speak directly to your father's diagnosis or proposed treatment, as mine was similar but slightly different. I am 70 years of age, and last year I was diagnosed with TCC (Transitional Cell Carcinoma). My urologist recommended a radical cysectomy with ileal urinary diversion. I now wear an external pouch. It was hoped that removal of the bladder, prostate, seminal vesicles and pubic lymph nodes would ensure that all cells were removed. However, pathology revealed that some cells had escaped the bladder and were detected in the lymph nodes, so chemotherapy was precribed to kill any free roaming cells. My chemo was cysplatin (the C in MVAC) and gemcitabine.

The operation went smoothly and pain was minimal. I required very little in pain relief after the first 24-36 hours. Unfortunately I picked up an infection which gave me atrial fibrilation and my release from hospital was delayed while this was brought under control.

My chemo consisted of 6 cycles of 3 weeks, week 1 was both chemicals intravenously over 6 hours, week 2 was gemcitabine over 45 minutes, and week 3 was a rest week. My blood count fell to a level which required a transfusion of 2 units of blood, and later an additional unit in order to be able to take the chemo. I was declared free of cancer at the end of the chemo treatment 9 months ago. I have since had two further CT scans, the latest on 1 June, and am still in full remission. I was back driving within a couple of days.

As for side effects, again I feel I have been very lucky. I had very little nausea, and only mild constipation, alternating with mild diahorrea. This lasted about a month. You will see from my photo, taken a few yeas ago that I had lost a lot of hair before being diagnosed, and I lost very little if any afterwards. It did affect the fine hairs in my inner ear, affecting my balance so I am not as steady on my feet these days. The chemo affected my sense of taste, and many foods were unpalatable for a while. This did not last long after the chemo ended. I have found that fatigue is a problem, and I get out of breath very quickly.

I don't know if this is any help, each case is different, and people react in different ways. I wish you and your father all the best. Keep us posted on his progress.

Peter.

Kenz
Posts: 1
Joined: Mar 2016

Hi Peter,

I am new to this forum and have been browsing old discussions for any information that could benefit me. I read your story and my father's is very similar. One difference though is that he went through chemo before having surgery for bladder/prostate/lymph node removal. The Pathology report revealed that some cancer cells spread to 3 out of 13 lymph nodes removed.  I am confused if he is in remission or not. They are not doing anymore chemo right now. He will have another scan in May. At that time, if cancer is present, I assume they will decide on a treatment plan. If not then he will continue having scans every few months. Have there been any changes for you? It seems like the chemo treatments you had were very successful. 

Mackenzie

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