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Overwhelmed and anxious with so many questions
My husband was diagnosed about 3 months ago with bladder cancer. He’s only 44 and I am 36. We’ve been married for 2 years. Both of us are still in shock and with Dr appts every day off pretty much since mid August we are both just overwhelmed.
He had a urinalysis as part of a routine physical that started this. No real symptoms before that. Once the abnormal urinalysis came back twice we were referred to urology. He had a cat scan which showed two neoplasms, followed by a cystoscopy that confirmed. Two weeks later he underwent a TURBT to remove and biopsy the tumors. The results of the biopsy were superficial and high grade so the plan was to do BCG therapy. We were elated that it wasn’t as serious as it could have been and we had a good plan set forth.
Unfortunately that positive thinking and confidence that we could conquer this has diminished drastically. I sit here awake after he had yet another uncomfortable day with tears in my eyes. I can’t express how helpless I feel and how scared I truly am.
We we’re supposed to start BCG a month ago, unfortunately post TURBT he’s never felt right. Constant lower abdomen pain and what they thought was sciatica has kept him down. It’s long but post op his urine never went back to a normal color. Originally based on just looking at it they thought he had a UTI so they couldn’t start BCG until it was clear. 1st week he was on antibiotics, 2nd week they started him on antibiotics and then decided he didn’t need to take them because his cultures were normal – not an infection but they still didn’t know why his urine looked so awful.
They decided to do labs and another CT scan. The CT scan shows a collapsed or blocked ureter (one of the tumors was close to that ureter the MD believes that post op inflammation caused blockage which caused the kidney to get backed up and inflamed) His bladder also has some thickening and inflammation. The MD did a chest CT and said that was clear. They decided to put him on a dose of steroids to help heal the kidney and bladder inflammation and then repeat the CT 1 week later to make sure it’s cleared (possible stent or catheter if it’s not at that point)
The MD consulted with other docs in his group and collectively they feel because my husband is so young the TURBT should be repeated to biopsy the areas where the tumors were removed to ensure the staging is accurate and they aren’t missing anything.
I was fine with all of this. I figured we finally had some answers to all of his pain and we are on the right track. Unfortunately we have online medical records and we got an alert that new results were posted. I read the CT results.
The chest CT revealed 3 nodules (one in each love of his right lung 2-3mm) could this be a sign of metastasises?
Also the abdomen/pelvis CT revealed subcentimeter lesions in the kidney that has the post op hydronephrosis.
It also revealed a ton of info regarding enlarged external iliac lymph nodes.
The original CT scan that found the tumors in the bladder revealed none of the enlarged lymph node or any lesions on the kidney so what the heck is going on? Could the post op inflammation and hydronephrosis be causing enlarged lymph nodes?
I should add the MD never mentioned a word about the enlarged lymph nodes and told us that he felt the biopsy would reveal the same since there is no sign of any other tumors in the bladder.
He is scheduled for another CT scan this week with a follow up early next week.
I’m so confused and scared that this is all much worse than they originally thought.
Does anyone have any thoughts on any of this? -
1 Reply
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Anniemarie,
Feeling in the dark about findings and a treatment plan is a terrible place to be – many of us have been there at times. It does seem that many urologists fail to communicate with their patients.
May I suggest that you direct the big questions to the doctor at the next visit:
– What are the issues that need to be addressed ? (The Doc may list: BCG for cancer, collapsed or blocked ureter, kidney issues)
– What is the timing of treatment(s) ? What will be addressed first ?
– Has additional testing raised any new concerns beyond the original issues ?
– Who can review the lab and imaging reports with us. We get concerned reading the reports.Make a list of the BIG questions. Be ready to take notes. If the Doc is able to provide a PLAN for treatment, you will have a guide ahead, which will change with new findings.
It is important to have the Doctor or an able assistant review findings with you, unless you have experience in reading reports. It is easy to over-read problems in the reports. You should NEVER have to ask yourself, “Could the post op inflammation and hydronephronis be causing enlarged lymph nodes?” – The Doctor, or assistant, should be answering that for you.
I understand your concern – you need to know more, and the answers need to come from the doctor. The information in med reports comes from the whole document, not form single sentences. Medical reports always look worse to the patient.
Hang in there. The first few months are the worst, then eventually, hopefully, we adjust to the terms and phrases, and gain an understanding of where the treatment is going. Get the Doctor to keep you up-to-date on plans.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
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