Homepage – Forum › Forums › Muscle Invasive Bladder Cancer › Wait times
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Paul D.
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August 5, 2016 at 10:33 pm #8406
Saldcorn
ParticipantTwo months ago, I was told I had bladder cancer. I had the turbt on July 8th and was told that an RC was necessary. So far, I’ve been given no idea of when I will be given an appointment with a surgeon/oncologist who can tell me what kind of treatment should be begun or when. I know the urologist who did the turbt is away until Aug. 15, so his secretary doesn’t/won’t accept phone messages or answer the phone.
Maintaining a positive attitude is now impossible for me as I just don’t know when to expect any kind of help. I’m afraid to start looking at another hospital as I’m afraid the whole process would have to start again from square one. (E.g., I know TGH won’t accept an ultrasound from another source, and I’m afraid they’d be the same with CT scans.)
I’m desperate for encouragement. Is this kind of wait time normal? Am I being unrealistically demanding – that is certainly a possibility – I’ve just run out of coping mechanisms.
August 5, 2016 at 11:12 pm #20822Jack Moon
KeymasterDo you know if a referral has been sent to Dr. Nam at Sunnybrook? If it has been sent, you should contact his office.
I can assist you if you would like some help. I would need to speak to you to get as much information as possible.
Yes leaving you out on a limp is not right.I can be reached at 905-691-6500.
Jack Moon
Co-founder
Bladder Cancer CanadaAugust 5, 2016 at 11:17 pm #20823Paul D
ParticipantSaldcorn I know exactly how you feel and had posted similar cries for help on the BCC web-site in my early days, I was diagnosed in January this year with BC after a CT scan then it was constant tests of some kind and waiting for an outcome until my Turbt and tumor removal in late March. It was March because I persuaded the booking nurse into giving me an earlier date and I was desperate to get things going. After that it was wait and more wait of some kind for the bio’s to be tested and then talked about before the Cystoscopy in late May, again wait for bio’s to be tested and talked about. My BCG treatment’s started in July (again 2 months) in my local hospital again after I was a bit pushy and found I had a new Cancer Care Clinic open which my main city hospital didn’t know about. Wherever you are in the world with BC “2 months” seems to be the time frame for talking to action starting, Dig deep Saldcorn as you are being tested to the limit but never give up an inch, having cancer of any kind is a test of epic proportions and to some we are only a number in their system and I won’t go into one particular person in my Hospital system who is the most insentative b——d on this earth. Find inner strength yourself and from family and friends and be pushy as it’s your life they are dealing with.
Love and best wishes Saldcorn you will get through this.
PaulAugust 6, 2016 at 12:13 am #20824Saldcorn
ParticipantHi Jack
I think what really set me off today was finding out that Dr. Nam’s name was not listed as someone who would be receiving the report from today’s CT scan. I assume the same was true about the blood work I had done last week.
Dr. Webster told me that he was ordering the tests to save Dr. Nam from having to order them. This made me think that a referral had been made, but when I learned that he wasn’t getting a copy of the report, I began to worry. I really have no idea if the referral has officially been made. Or accepted.
Dr. Nam’s office was closed until yesterday (the 4th). Dr. W’s secretary said she’d call his office on Thursday, but I haven’t heard anything from her, so I just don’t know. I asked her if she had any idea how long it would take Dr. N’s office to respond and let me know and she said Dr. N and his staff would triage the requests and decide on an order for the appointments. I asked if she had any idea of a reasonable ‘by date’ and she said if I didn’t hear from them, I should call her back on the 15th. Perhaps I’m a victim of vacation timing, and I wouldn’t deny these doctors a vacation.
I thought that I would send a letter to Dr. W’s fax machine on Monday and plead for answers. I was also going to phone Dr. Nam’s office and hopefully get an answer, although Dr. W’s secretary told me that Dr. Nam’s secretary accepts only one phone call per patient, and I’m nervous about blowing my one allowable call.
Sadly, I am a coward and am very bad at being assertive.
I probably should have sent this as a private message, but don’t know how to do that.
Thank you for responding so quickly.August 6, 2016 at 2:35 pm #20825marysue
ParticipantHi Saldcorn!
Boy, do I ever concur with the frustration you are experiencing. As Jack said, work with him if you need to, to get the help you need.
I too, had 8-9 week wait back in 2008 for my first TURBT. I was told by my uro’s office that things were fully booked for the summer and the earliest I would get done was sometime in the fall of 2008. I don’t know how booked they really were or if it was a case of vacationing staff creating something of a backlog. This was early July 2008. I nearly went hysterical with the “not knowing when”. My uro did tell me that I was on the “urgent” list and would be called ASAP which turned out to be September 5th, 2008 but still I felt that they caused me a lot of unnecessary mental stress with their response. Since at that time, I had no idea of what the follow up was going to be it really left me in the dark as to how things were going to go to treat the cancer. I honestly felt their response meant that they didn’t care. I later learned that they do, it is just the way that the system is set up. I also experienced further stress with the wait for the pathology results. No one told me that it would take 1-2 weeks for them to get them back and that I’d need to heal before any further action could be taken.
I truly think that our doctors and the medical system as a whole needs to do a better job of how they respond to patients – not leave us in limbo. Explaining how things will go down ahead of time would help a lot. I too, agree that doctors and medical staff need their vacations but cancer doesn’t wait for someone to complete their time off and of course we worry about what is happening in our bodies in the meantime.
As mentioned in the meantime, work with Jack if needed to get things going and I STRONGLY suggest (and this is easier said than done, I know) try to carve some pockets of time to do some things that you truly enjoy as a distraction and to help pass the wait time.
For example, once we knew that I was going to have to wait for surgery, my hubby decided to take some long overdue vacation time and we went out of town to Kelowna, BC at Lake Okanogan for a few days. We had our cell phones on just in case we got called. We were close enough to Calgary to get back if needed (didn’t happen) but getting out of the city and into the fresh air and swimming in the lake did me wonders.
Hang in there, we are here for you. Take care of yourself. ((((((HUGS))))))
August 6, 2016 at 3:00 pm #20826Saldcorn
ParticipantThank you marysue.
I’m running out of Ativan and my GP won’t prescribe more “in case I get addicted.” She gave me a scrip for sleeping pills, but in the 2 nights I’ve taken them, they have neither let me sleep through the night nor sleep past 6 am.
I’m afraid to leave the house Monday to Friday in case I get a call so I’ll at least know who I’m going to be dealing with. If I don’t have any news by Monday night, I will definitely call Jack for help. I am praying, though, that this won’t be necessary. I’ve written a letter to my uro’s secretary actually pleading for any information she can give me (but now have to find a place I can fax it from).
Thank you so much for replying,
Sue
August 7, 2016 at 6:27 am #20830Arn’s bladder
ParticipantHi Sue (Saldcorn),
Marysue (from Calgary) has summed it all up perfectly. The waiting, not knowing, and worrying is very hard. Trying to stay positive and using coping mechanisms is almost impossible at times. Please let Jack Moon help you. I am so angry for all the mental stress you have been put through !
My husband (Arn’s Bladder) has waited 2-3 months for every appointment, procedure results, etc. over a 2-year period. He needs his bladder removed (within 3 months), before the cancer spreads. Waiting since June 22, 2016 for a surgery date. I finally sent an email to the surgeon’s clerk just asking for an idea of when the surgery will be done. She called Arn at work the next day – he is booked for surgery for Sept 1, 2016. Now we have a date! Happy and nervous at the same time.
Sue, please keep posting. People here are very supportive & do care. They know how you feel. You will get your appointment with a surgeon/oncologist & start the process of treatment and healing. Take care, I will watch for your posts !
Arn’s wife Kory
August 7, 2016 at 11:00 am #20831Saldcorn
ParticipantHi Kory,
I’m very happy for you and Arn that his surgery date has finally been set. I’m guessing knowing help is at last in view must be a great relief to you both. All the best for the rest of your journey.
SueAugust 8, 2016 at 3:35 pm #20842marysue
ParticipantHi Saldcorn!
I understand your stress and anxiety. And yes, some doctors do get concerned about prescription drug addiction which is a good thing. Is there any form of a cancer support centre near you where you could go for some physical peer support? Also I suggest asking your doctor if there is any way that you could go for some psycho-social counselling as well.
A combination of professional and peer support usually works for people. The professional support gets you through the horrible mindset that you are now struggling with – who doesn’t? and the peer support (including us) is the shoulder you can lean and cry on.
A further suggestion – consider trying out some form of yoga or meditation. I do a combination of acupuncture treatments and yoga. My then acupuncturist suggested the yoga to calm my mind down and it did help.
(((((HUGS)))))
August 17, 2016 at 8:51 pm #20887Saldcorn
ParticipantHate the medical profession. Their motto should be, “Don’t call us… We’ll call you… When we get around to it.”
Every doctor I get referred to is on vacation. So, wait,wait, wait for a phone call. Now I’ve been told that I have to see a Medical Oncologist to get an opinion on whether or not I need pre-op chemo. And the doctor I was specifically referred to is on holiday until Monday. And even then there’s no guarantee when he/she will get around to agreeing to an appointment date.
I asked how long it’d probably take to actually get an appointment and was told about a week. So…, next week? The week after that?
I asked if chemo is necessary, how long would it take for the treatment to begin. I was told it depends on the method of delivery.
They just love playing God, don’t they? It’s been over two months since I was told it was highly aggressive BC, and STILL no treatment begun. STILL no date that anything will begin or be done.
Still waiting to get the path report in the mail, but now I’m afraid to open it. I’m pretty sure that the longer they make you wait, the worse it’s gonna get.Like I’ve said before, you’re nothing but a file to be dealt with… eventually.
August 18, 2016 at 4:38 pm #20889SJay
ParticipantMy experience has been that the doctors and nurses associated with my cancer treatment have been caring individuals. For the clerks, however, most of the time it seems I’m just another piece of work for them to do. An example was when my uro asked me to make another appointment for before a particular date. When I went to the booking clerk she said nothing was available then and gave me a later date. We objected and her response was something along the lines of “that’s all we have.” My wife spotted our uro in a back hallway and insisted the clerk go check with him. The clerk was reluctant, but did it. The uro suggested a 7am appointment within the original timeframe on a day he was operating. Clearly he was coming in a bit earlier than usual before he headed to the operating room that day to accommodate the appointment. I think it helps to be more than a little assertive when dealing with the clerks as they are a significant barrier between you and the health professionals providing your care.
August 18, 2016 at 4:53 pm #20890Liz Webb
ParticipantThese are very scary discussions for a newbie like myself. Had my first scope June 23rd of this year, Dr asked me if I wanted to watch, stupid me sure it will be cool. Was I wrong. When I saw the tumors, I though oh my god this is what cancer looks like. The DR never said cancer, but somehow I new. Second scope to remove was a July 20th. It took 29 agonizing days to recieve my diagnosis at my surgery follow up appointment. Aggressive bladder cancer….so next surgery is Sept 14, God please remain surface so I am eligible for BCG treatment. So in the end after reading other comments what I though was so slow was better than some of your experiences. But can I relate, yes it seems to take forever
August 18, 2016 at 8:50 pm #20892Jack Moon
KeymasterLiz, going forward insure your family doctor is copied on all tests, and lab reports. Usually pathology results from the lab is complete in 3-7 business days. That way you know the results prior to meeting with your Urologist. Your family doctor will be able to explain the results of the lab report and in most cases the pathology report is now written in laymen’s language.
All the best,
JackAugust 18, 2016 at 10:35 pm #20893Paul D
ParticipantWelcome to the BC club Liz and yes “waiting” for diagnosis, appointments, treatment plans and treatment is something that gets all of us with BC so mad and it is a worldwide thing not just in Canada as I am in Australia experiencing the same thing. I believe the doctors and nurses do care but throw in admin staff, well that’s another issue, I have so far had a relatively smooth journey with my BC and have just completed my first 6 BCG treatments and await another Cystoscopy before another 3 maintenance BCG’s. I am only this year diagnosed with non-muscle invassive plus tumor and CIS all high grade and apart from a few set backs all has been ok, read through our posts good and bad, we strive information and thankfully there are people like Jack who give the rest of us the benefit of their experiences. You will find yourself a stronger person as your journey progresses and one word of advise “ask as many questions of your medical team as you can”.
Love and best wishes.
Paul -
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