We are new to this and Overwhelmed!
My life partner is 75 years old. He was dx'ed with non-invasive bladder cancer in 2020. At that point in time he was given BCG treatments, sometimes over 6wks, sometimes over 3wks. (At times the BCG was in short supply). We recently moved and within the past month found that the bladder cancer has invaded the walls of the bladder. He is not a candidate for Chemo as scans suggest low kidney function in one kidney. (Stage 3 Chronic kidney disease) He has had a quadruple by-pass, 2 strokes, one heart attack, (dx'ed with aortic stenosis) and he is due to have a Bilateral Ureteroscopy Diagnostic soon for addt'l info and a Robotic radical Cystectomy with urinary diversion soon after that. My life partner is weighing the risks and benefits and going through Quality of Life thoughts. It is his choice, yet I want to be the Best Advocate for him as I can be. I could use some advice for the both of us as well as individually. Thank You.
LifePartner - Thank you for reaching out to us as we are here to help you and your partner with this journey from our personal experiences. I am not a medical professional and cannot recommend what treatments he should have. Due to the variety of medical issues that he has had, I suggest having a first and second opinion as to the direction that would be best. I was 63 when I had RC robotically and have a great life. I do everything I did before with the exception of heavy lifting. I did not have other health issues though and for that reason did not have any concerns with the surgery and recovery. I would ask all of the doctors involved about this radical surgery and if they feel it is the best option. Only they would be able to determine where he is currently health wise and the risks and benefits of this procedure. For someone who is in good health and considering RC, I can say that I did not find my quality of life impacted at all. But again, i was in excellent health with no history of other issues. I highly suggest obtaining at least 2 opinions regarding RC and also involving all medical professionals that he sees for their opinion. He is very fortunate to have you by his side during this challenging time. Keep us posted on how both of you are doing. My best Linda Urbanski (moderator, Bladdercancer.net team member)
been down similar hoops n trials. Due to my medical?/ nursing career, age, other health issues, I failed BCG txs n my cancers, yes 2 kinds now, are " sitting there ".. I have chosen no surgery etc due to my belief in quality of life concerns. I was 65 n now 70..good days and not so good, so i live accordingly. No one can choose for you 2..but suggest a patient advocate to get your Dr's talking to each other n reroute the insurance " dis- communication" issues. Prayers to you. @ @quilter52 - I hope that you are able to keep your cancers at bay. I know how overwhelming it can be a times so please reach out if we can help provide support for you at any time. My best. Linda Urbanski (moderator, Bladdercancer.net team member)
Dear quilter52, Thank You. Though my Life Partner has access to "My Chart" re: results from scans/tests, etc., it is all written in Medical jargon - some we understand - some mixed info from different docs...Thank you for your advice in getting a patient advocate - My Life Partner is getting good at saying, "NO" when a doc's office calls for an appt for "X" and we don't even know what the "X" is for ..then he has to contact Dr. A who ordered "X" to ask what/why with an explanation - (again, we have to travel minimum 1 1/2 hours to 4 hours away for any of these tests/scans, etc.) I know myself well enough, (was dx'ed up until last yr with PTSD per Psych doc/on meds) due to being a Medical Advocate for my deceased husband, (15+ yrs ago) with huge hospital mess ups causing his demise and I just can't do it again. Of course, my Psych doc no longer accepts my Medicare Insurance and I know I have to take care of myself - So having a Patient Advocate is Needed! Thank You!
@LifePartner - I am sorry that you both continue to have these issues. When a medical team member calls about an appt, they certainly should be telling your partner what it is for. Is it possible to speak with a nurse at the office and let that person know that the charts need to be explained as well as the purpose of the appointments? It may be that the reason for the appointment is to be able to discuss what is going on in detail. Another suggestion that we have where I am from, is to have a discussion via facetime. I do that with my doctor on occasion when I do not need to be in the office or I am out of town. That would save the trip and would get questions answered and things better explained. Your partner needs to speak with someone on the medical team and find out what is going on and the reason for the appointments. I would call the office and explain the frustrations and see how they can help. I also agree that all of the medical providers need to be communicating and be on the same page. They may be doing that by reading the info on My Chart. Wishing you both the best at obtaining answers. Keep us posted. Linda Urbanski (moderator, Bladdercancer.net team member)
Dear Linda, Thank You for your input, too! We agree, we need to know what the appt is for - we continue to get "mixed messages" without answers. They all supposedly have access to "My Chart" so we are perplexed. Per the Urologist/Oncologist out of state orchestrating this entire "web", we are not allowed per his information to communicate through ZOOM across state lines where most of these other docs/appts/scans are located which he has set up. We are beginning to become angered with this quagmire.
@Lifepartner - My doctors do not use Zoom, but we use Facetime. Many medical providers are "working from home" in my area and they set up appointments that do not require that they see the patient in person. My Chart also has an area where you can send a message online and that my be another option to consider. I send messages to my doctors and physicians assistants to schedule appointments, to ask questions etc and always get a response. That also would provide a response in writing which would be beneficial. I wish that I had more thoughts that would help but also agree that locating a patient advocate at the hospital that is used would be beneficial also. I wish you both the best in figuring out the best route to take that provides the information that is needed. My best Linda Urbanski (moderator, Bladdercancer.net team member)
you definitely have had a lot of advice on here. I must point out I am not medically trained. Firstly thank you for sharing so bravely. we are definitely here to support you any way we can. Laura, Moderator,
