Treatment completed. WP

[WP]

Hi, I haven’t posted since June5/19. I completed my chemotherapy treatments this summer without to much difficulty.  The Oncologist was very pleased.  The CT Scan was very positive , there was no indication of the cancer spreading.

I had my RC surgery inVancouver on Sept. 19.  The surgery went very well. The Uro-Oncologist called me with the pathology report in Oct.  He was very pleased.  The lymph nodes removed were all negative.

i have my first CT scan and follow up in the next week.  I can’t seem to quit  worrying about recurrence and survival time based on what I’ve read.

i was diagnosed with Stage 3 bladder cancer.

Can anyone help me with suggestions on how to move forward.

Thank You

 

 

[Gord]

Hi WP. So glad to read your good news! And it is good news. I do know what you mean about moving forward from this point, and the exact same feeling regarding moving forward. Perhaps I can share a little from my experience that you might find helpful. I am now approaching being 7 years cancer free, after having been diagnosed with Stage 2 bladder cancer in January 2012 at the age of 52. Had chemo, then a RC in June 2013. I have a neo. Similar to you, good reports and lymph nodes all negative. Bladder gone, cancer gone.

I remember celebrating/marking my return to health after my cancer journey.  I returned to work three months post RC. The day before that I walked in the BCC Awareness Walk, raising a few thousand dollars, and had a bbq at our home afterwards with closer friends and family to mark the occasion, and celebrate my good health and my return to work. For my one year anniversary of being cancer free, my wife and I planned a three week trip to England and Europe to explore family roots and visit friends – a long time desire, accomplished, which was not so clear would happen a year previous. These things boosted my spirits and gave me confidence that I was now healthy and life was returning/had returned to normal.

To be quite honest, as each 6 month CT scan or ultrasound approached, and my resulting follow up, I thought about the possibility that something might appear somewhere else. That is pretty normal thinking. It could have. But so far, it hasn’t and I worry much less about it now that I am several years beyond. I just have yearly checks now.

I remember throughout my journey, when I was worried about my diagnosis, recurrence or survival rate, my wife asking me – “what did the doctor say” and “what did the report say”? Of course, the doctor had given me good news and the reports were all good.  These were good reminders to me, that helped me. I had been fairly positive throughout, but did have my down times, and remembering the facts really helped, and not going down the path of “what if’s”. Though I am reminded pretty much every time I pee that I had BC a few years ago, I really don’t think about it that much day to day. Though people still ask me “how are you”, and when I say fine, they look at me with a concerned look, and say, “but, how are you”, clearly referring to my cancer journey! Happy to tell them I’m almost 7 yrs cancer free.

So I would encourage you to do a couple of things to mark and celebrate your return to health, believe the reports and scans, and start to look to the future ahead of you, step by step. You have been through a lot – symptoms, diagnosis, treatment, surgery, recovery, and now its a bit strange that all that activity and uncertainty is largely behind you. It will take a while to adjust, but I think that with a few tweaks, you can begin to make plans and look forward to the future with confidence in your return to health. Step by step. And go into that scan  and follow up next week with confidence in the doctor’s words. You’ve had enough worry the last few months to do for a while. Time to enjoy your return to health, and look ahead.

 

all the best, Gord

 

 

[WP]

Thank You Gord, for taking the time to respond to me.

Your encouragement and details of your own personal journey really helped.  I have a strong lady beside me that is my biggest cheerleader.  We are getting married this fall.

She lost her husband to colon cancer and I lost my wife to Multiple Sclerosis.  I think that is why we are both scared inside.

I will try to take your advise and look forward to a long future together. Thank you again.

[marysue]

Hi WP:

Gord has given you very good and comprehensive advice.  I too, worried about recurrences almost constantly in earlier years.  I worried when my uro moved me up to the next level of checks.  When I graduated from 3 month to 6 month checkups and am now on annual, I was concerned that “something could happen” before the next check up and I wouldn’t know and the extra wait may affect outcome.

My uro reassured me the reason he was “graduating” me to the next level was because he felt that my chances of recurrence were dropping significantly.  After hearing that I managed in time to see this as a positive thing.  I was slowly putting the beast behind me.  I decided to treat myself for every success I had – completed treatment sessions, clear cysto checks – you name it.  Now I’m almost 10 years clear and it seems like forever ago since this happened.  I will never forget the journey and the lessons learned but I don’t worry much anymore.  My uro actually wants to cut me loose this spring pending a clear cysto check.  He has also given me the options of 18 or 24 month checks.  Of course this is with the understanding that I can contact his office should I suspect anything wrong. I will most likely opt for the 24 month checks pending his approval.

It is common to have a sense of “separation anxiety” when surgery and treatments are completed and you are told that you don’t need to come back.  While this news is great, cutting the apron string can have a wierd feeling about it.  But I say celebrate everything that you have accomplished.  This was no mean feat.  When I get the good news I expect to get in April, I’m going to do the biggest happy dance ever!!!  Hope you will do the same.  All the best.  ((((HUGS)))

[Joe]

Hi WP,

The survival rate of  with organ-confined lymph node-negative tumors, which is your case has the highest progression free survival rate compared among the patients who had radical cystectomy.   Lymph node-positive tumors regardless of stages have poorer survival rate compared to lymph node-negative tumors.   This makes sense that Pelvic Lymph nodes are usually the first organs which BCa metastasize.  If lymph nodes have not been metastasized, it is likely other organs have not bee metastasized.  I remember that I had watched a webinar on this subject.  Sorry I cannot locate the webinar, but the below is the link of a study about 5 year survival rate between lymph node-positive and lymph node-negative patients.

https://www.researchgate.net/publication/8693704_Survival_Rates_after_Radical_Cystectomy_according_to_Tumor_Stage_of_Bladder_Carcinoma_at_First_Presentation

Best wishes

joe

 

 

 

[WP]

Hi Joe and Mary Sue,  I appreciate your insight and own personal experiences.  Your advise is making it easier to face my appointment next week.  I think I have been my worst own enemy by reading past articles on the internet regarding median survival rates for stage 3 bladder cancer patients regardless of treatment.

Joe, I read the article that you suggested. Thank you for that.

If there is anyone on the forum who had stage 3 bladder cancer and had chemotherapy followed by a radical cystectomy with a successful outcome I would love to hear from them.

Thank you. WP.

;

;

[Joe]

Hi WP,  it is likely that not many people who have a successful outcome come to the forum.

Your doctor/ hospital treated you with neoadjuvant chemotherapy.  Neoadjuvant chemotherapy is a recommended treatment bu Canadian Urologist Association.  The reality is that many urologists in local hospitals will do RC but not always neoadjuvant chemotherapy.   So, I think you are under a good care.

Lymph-nodes negative indicates your BCa was likely contained.  Also,you were able to complete neoadjuvant chemotherapy, which would inch up the overall survival rate by 5-8%.  There are patients who cannot complete neoadjuvant chemotherapy because of side effects or because of various pre-medical conditions.

Given above,  it may be the time for you to move the next phase – survivor-ship care plan, i.e. how often certain tests are done to check everything is okay. I know a fellow who was diagnosed with T3.    He did have neoadjuvant chemotherapy before RC and he seems to be doing extremely well.   He has annual CT scan to check.  I think you need to find out the exact plan from your doctor.

I do not know which urinary diversion – ileal conduit with external bag or neobladder you had chosen.   If you had chosen ileal conduit , if you want to exchange information in person, you can attend a local support group organized by BCC or you can even try a local ostomy support group.

Meanwhile,  I like what one of urologists  says to every patient  who had RC.  “Enjoy every day. Every day is the gift”

Best wishes,

Joe

 

 

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