Trying to prepare.....

4 years 8 months ago #56561 by Baybee75
Replied by Baybee75 on topic Trying to prepare.....
Thank you Sara Anne for your response - the initial Hematuria symptom was nearly 2 years ago. He had 1 episode of "black" (and I mean BLACK) urine but did not pursue any further diagnostics at the time. Needless to say I think that this SCCB has been brewing for some time and looking at him now it seems he has gone from 55 to 80 in a matter of weeks. My mother already has her own health issues, she is 64 with late onset lupus (4yrs) and it seems that the stress of this situation is starting to affect her overall health. I have told her that they need to have a very frank discussion with doctor but she does not think that this provider isn't all that interested in hearing what she has to say. Her husband does what ever the doctor says to do without question and believes that he will be cured with each intervention that he is subjected too (which is a possibility but very slim). I would like to think that this provider will eventually say when enough is enough or at least have a discussion with them about how they would like to proceed - which is not something he has done yet (I am not impressed by either provider). Luckily we have Hospice of the Valley here AND I have lots of connections in the local healthcare systems for both resources and support.

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4 years 8 months ago #56560 by Baybee75
Replied by Baybee75 on topic Trying to prepare.....
Hello Lwsb1 - congrats on making it 3 years; I hope your quality of life did not suffer. To our knowledge they did not remove any lymph nodes (perhaps 1); the doctor did note that he got the margins. The doctor has not said anything about it spreading, just that once he is healed from surgery they will do another round of chemo. This is such an awful thing for both him and us - I just want to make sure that we are ready if things should not go as well for us as they did for you.

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4 years 8 months ago #56558 by Lwsb1
Replied by Lwsb1 on topic Trying to prepare.....
Hello, I was diagnosed with small cell bladder cancer 3 years ago. My question is did they remove the lymph nodes? I had the etopiside and cisplatin chemo and then the bladder removal and 20 lymph nodes. Have they told you it has spread? Take care lwsb

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4 years 8 months ago #56546 by sara.anne
Replied by sara.anne on topic Trying to prepare.....
So sorry to hear of this diagnosis. Small cell carcinoma of the bladder is, indeed, rare and not good news. Immediate chemotherapy would be the usual treatment, to try to get it stopped while other approaches are considered. You may be correct that the initial diagnosis was off...this is not uncommon and is the reason why a second TURB is often done, as it was in this case. I suspect that the doctors wanted to put a "hold" on the cancer before they did surgery which might release more cancer cells into the system. They were hoping that this might keep it from spreading further.

Your mother and stepfather need to have a frank discussion with the doctors about what his expectations might be. Only the doctor has the information to provide the answers your family needs now. Once they have the answers to their questions, your stepfather can make his own decisions about how far he wants to take treatment.

If Hospice is the answer, the time to bring them in is earlier rather than later. A good hospice program has a lot to offer the patient as well as the family and can handle issues such as pain management. Be aware that there may be several options as to hospice service providers in your area. It used to be that they were non-profits set up to aid patients. Since they have become a more standard provider of care many are now run as for-profit centers. You will want to interview those available and check with families who have used them.

Your family is lucky to have you on their side. It helps to have someone who understands the language the medical types use and interpret them!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 years 8 months ago #56545 by Baybee75
Trying to prepare..... was created by Baybee75
My mother's husband (55yo male 30+ year smoker 2pck day, multiple co-morbidities; father was non-smoker who died of multiple myeloma at age 63 & sister died unknown causes after autopsy at age 50) was diagnosed in July with a papillary tumor of SCCB (staged 2). He had a CT and PET Scan and underwent 4 months of adj. chemo. He underwent a TURB before chemo and at the end of November; this is when it was found that the entire cancer was covered in cancer. On December 20th he underwent a cycstoprostatectomy with lymphadenectomy - we just received word that SCC was found in the lymph samples; he is also suffering from wound dehiscence. He stopped smoking in November.

My mother wants to know why the doctors (MDCancer Centers, PHX) didn't perform the cycstoprostatectomy in July. Why did her husband have to endure 4 months of chemo (a waste of time & $$$$) if the cancer was going to spread. So I started doing more research and found that the etiology for SCCB is unknown. We did find out that SCCB is agressive and metistatic and does not show up on "scans" (see above CT/PET) and that -1% of bladder cancers with a 1-9/1,000,000 dx with less than 1500 cases since 1981 - neither the urologist nor the oncologist ever provided this information. At his appointment before surgery is when they informed us of 16-17% 5year survival rate.

While I am not a physician I am nearing the end of my Master of Science in Public Health and know AP, Pathology, Epidemiology, and BioStats - so I am thinking that the original dx of stage 2 was incorrect. I also understand that there is no standardized protocol for treatment of SCCB but that it is a pulmonary cell and since SCC of the lung responds well to chemo and radiation therapies that it is believed SCCB would do the same. I did read one meta-analysis research paper that showed a median survival rate after treatment (depending on type of treatment) of 4.4 months - 7.6 months - 9.9 months.

Now with the findings of lymph involvement, I have been reading about average 10 month survival rate after treatment. Not at any time did the doctors provide him with the option of not treating it - not a very Patient & Family Centered Care aproach.

What I want to know most of all is what should we be looking for towards the "end" and how should we best prepare for it - i.e. hospice? Should we be looking for specific S&S like pain, weight loss, etc. Another question is should we be getting him on SSDI or will he be able to return to work?

I appreaciate any and all recommendations for this patient situation!

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