Learning you have cancer

3 years 9 months ago - 3 years 9 months ago #58737 by Sean T
Replied by Sean T on topic Learning you have cancer
I had blood in my urine and I was incredibly tired (not sleepy) at times and I knew they were signs of bladder cancer based on information I found out on the Internet. I forget the exact time frame of events, but the day it was officially told to me I was lying there getting a cystoscopy and the doctor was saying to the nurse "do you see how irregular it is on that side?". I knew then that something was up. After the procedure he called me into his office and said I had a very large tumor in my bladder that had to be removed. I said "do you mean I have cancer?" and he said yes. He then told me all the information I needed. I asked him how long I would have if I did nothing and he said maybe 18 months. Well, the long story made short is that I had the tumor removed and I had treatment and I am still cancer free (as of today), over three years later.

I don't think my doctor should have talked to the nurse like that but he turned out to be a good guy and that is just his mannerism. The poor guy actually had to stop practicing because he had a major heart attack.

Good luck with your mother-in-law. I hope everything goes well.

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, As of May 4, 2023 - cancer free!

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3 years 11 months ago - 3 years 11 months ago #58383 by Alan
Replied by Alan on topic Learning you have cancer
Having the POA and your relationship with your MIL should make things easier. I had the difficult decision for my Dad at age 87 after a debilitating heart attack to unhook the machines and feeding tube they had in him. I gave a couple of days to wait for a miracle of some sort but, as the doctor said there was little to no hope. I had discussed all this with him in prior years of what if and that made things a lot easier. Yours is a little different as it involves further treatments, just keep the rest of the family in the loop. YOU were honored and given the POA for a reason. You will do fine.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 11 months ago #58380 by Lossol
Replied by Lossol on topic Learning you have cancer
I do worry about her age and overall health. She has had a hard life and not always treated her body the best. She was a very heavy drinker when she was younger and is paying the price. She has a seizure disorder due to her drinking and although she has not had a seizure in over 6 years she take 3 different medicines to help keep them at bay. She also has diabetes that thankfully is managed with yet another medication instead of insulin. She has a pace maker and heart murmur. She also has son calcification of the artery and veins leading to her legs, which makes her legs sore. So when you look at it on paper her health does not look good at all. However, she is no invalid. She gets up every morning, fixes her own breakfast and washes dishes. She does her own laundry and generally helps where she can. She is just from the generation that keeps going like an energizer bunny. Sometimes it makes it hard for me because she doesn't always tell me when things are wrong. She lies to me and says she is fine and doesn't need anything until I catch her mid cramp, then she confesses that it has been happening all day. Kind of maddening. I struggle to help her without over helping her. I try to let her do what she can, but she doesn't really ask for help when she cant do it.
I and other family members are afraid that she will choose not to seek out treatment. As her POA I feel responsible for following her wishes and that will be a hard one to deal with.
Thank you for the attachment. I will review this information and I am sure it will teach me something I don't know yet.

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3 years 11 months ago - 3 years 11 months ago #58377 by Alan
Replied by Alan on topic Learning you have cancer
Welcome Lossol!

We are always sorry one needs this forum but, you will find many that have some ideas and "been there and done that" to help.

I will try and answer a few of your questions and discard if they simply don't help. With a MIL that has some mental challenges it is even more complex. Please do give yourself a pat on the back for being a caring person! It is often more difficult on the caregiver than patient.

After the usual diagnostic tests: cytology, Ct Scan and cystoscope I'll never forget the call from my URO after the pathology report. He was very caring and sensitive as he called my wife first who worked as an RN in the maternity ward at the same local hospital he had privileges at. It was high grade and he asked her if she wanted to break the news. She said no, he is a big boy and wants to hear it personally. I am grateful to both people! Anyway, it hit me like a ton of bricks. I was lucky, I had already researched several options on what if's plus I did not have to have a cystectomy. As it was non invasive I came to the quick realization BCG and non invasive was better than invasive. I also told myself even if it gets worse or BCG didn't work I knew MANY people with worse health problems. This took the better part of only a day. I had it, let's go on and attack! Some people are never even able to get to grips like this for which I am thankful for in my case. Not judging anyone as everyone has different histories, backgrounds, family situations etc. So, you probably have an idea on how to present this to your MIL already. I don't mean to write a book but, you are doing your best and that is all anyone can ask for.

Age 79 also presents other problems as cystectomies are rigorous surgeries. How is her general health other than dementia? What does/will the doctor say? You sound like you are really researching things. One last observation. One simply does not know enough facts until the pathology report is done. Let's hope for the best (no surgery...maybe even it is NOT cancer as unlikely that is the case) and plan for whatever comes down the road. Also, a second TURB is usually done when there are not margins" to evaluate the sample.

Continue asking questions as others should see your post as you go. You do have some time to sort things out. IF, it becomes a surgery option I am attaching a pre-op guide that has too many questions so pick and choose as you see fit.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 11 months ago #58376 by Lossol
Learning you have cancer was created by Lossol
This may seem a little premature but I am a planer and I feel better about things when I have all of the information. I am not the patient, I am the daughter-in-law of the patient. I am the primary care giver and power of attorney. My mother-in-law has some dementia and a 5th grade education. Medical terms and some times, basic information goes right over her head.
This morning she had a biopsy and now the doctor is saying that it appears to be cancerous and muscle invasive. He was unable to get the entire tumor because of how deep it went into the muscle. He could not find health tissue. We will not know for sure that it is cancerous until the pathology report comes back. My husband and I have chosen not to tell her what the doctor "thinks" until we know for sure what we are dealing with. She understands that she was having a biopsy and that he would be testing for cancer and that we do not have the results yet.
What I would like to know is how were you told? How did it effect you or make you feel? How would you have liked to have been told? What questions did you have? Furthermore, How did you feel when you were told that you had to have your bladder removed? Because this is what the doctor told us would be part of the likely coarse of treatment. She is a 79 year old woman who comes from a family that would seldom do what is necessary to find out they have cancer much less seek out treatment. As her power of attorney I hold a responsibility to do what is best for while still trying to respect her wishes no matter how crazy they may seem to me. Thank you in advance for any help you can provide.

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