Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › New to BCC, first post
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DerekA.
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August 29, 2016 at 12:12 pm #8418
DerekA
ParticipantAugust 29, 2016
Hello. I am new to BCC and this is my first post. I have been diagnosed with T1HG BC. A bit of background. I am 75, male, very good physical shape, no other aliments, very active (ski, tennis, etc). Feb 16, noticed blood in my urine; Mar 11, cystoscopy and from urine analysis, doctor said I had cancer; Apr 6 TURBT; Apr 8 pathology report “High-grade urothelial papillary neoplasm with invasion into the lamina propria”… not muscle invasive…single tumor about 2cm long; May 27, started BCG treatments, a few problems with catheter insertion failures, but resolved by changing catheter type; minimal adverse reaction to BCG and fully back to form in 36 hours; last BCG treatment July 12.
On Friday, August 26, the follow up cystoscopy showed a new tumor in the same location. The surgeon said it was not a BCG failure and that I would have another TURBT in 3 to 4 weeks. We were too shocked to ask any questions but we are going to try to get in touch with him and the Oncologist today.
My wife and I are very concerned! It is like a black cloud over our head, with knots in our stomach. Has anyone had a similar experience, and can help us through this emotional period?August 29, 2016 at 1:12 pm #20912Saldcorn
ParticipantHi,
As many others will tell you, you’ve already taken a step toward helping yourself deal with that black cloud by posting on BCC.
Most everyone will agree that the waiting and the not-knowing are incredibly difficult. Some days I feel I can’t take it anymore, and some days I can. This is the site I come to on the days I can’t.
You and I are very different…, different gender, age, diagnosis, so I can’t help you with what you’re going through physically. I just wanted to reassure you that you can always be assured of good advice and great, support here. Good luck with all.August 29, 2016 at 4:44 pm #20913Jack Moon
KeymasterHi Dereka
Sorry you have been diagnosed with non-muscle invasive bladder cancer. I was diagnosed in 2005, had 2 low grade recurrences during BCG treatments and have been cancer free since 2007. Bladder cancer has a very high recurrence rate. It took 3 sets of BCG treatments before I got an all clear. I had virually few side effects during the 1st 12 treatments, just some urgency and burning during the day of the treatment. Beginning the 13th treatments many of the usual side effects set in which were spasms, and a fatigue.
I recommend you download the brochure on the BCC home page regarding non-muscle invasive bladder cancer.
http://forum.bladdercancercanada.org/en/facing-bladder-cancer/guidebookIf you would like to speak to a survivor just call the toll free number on the home page, leave a message and you will be contacted usually with-in 24 hours.
Many questions you and your wife may have can usually be answered on this forum. I am sure many others will respond to your post.
Best wishes,
JackAugust 29, 2016 at 4:44 pm #20914SJay
ParticipantSorry to hear about your diagnosis Derek. I had the same one and while you are a few years older than me, we are similar in that I am physically active as well (skiing, hiking, etc. for me) and have a generally straightforward and positive outlook on things (which I think I can see in your post). You are fortunate that diagnosis and treatment is being done in such a timely manner. It doesn’t work out that way for everyone.
When I asked my uro about recurrence, his comment was “Do you really want to know?” I already had an idea, so I said that yes I did and he let me know it was about 70%. Everyone has their own journey, though, so how it works out for someone else isn’t necessarily how it goes for you. Some people never have a recurrence, some have years of TURBs and some have further surgery and chemo.
I’ve found this site to be great for support. Sometimes it’s good just to tell everyone what you are going through, other times to get questions answered by those that have already been there and it even helps to answer questions from those who are coming after. There is also a lot of very useful and accurate information in the Facing Bladder Cancer section of this website. I think you will find that knowing more can help. Good luck to you. Keep us posted on how things are going.
August 29, 2016 at 8:41 pm #20916DDep
ParticipantDerekA,
Bonjour,
Je suis désolé d’apprendre que vous avez été diagnostiqué avec le cancer de la vessie. Toutefois, il est bon que vous avez rejoint ce site. Le cancer de la vessie est certainement traitables. Il n’est pas nécessaire au désespoir.
Parce qu’il y en a d’autres qui lisent ce site, je vais poursuivre en anglais
Bladder Cancer has a high level of recurrence. I know you are going through difficult emotional time right now. We start thinking that the Tumor is gone and we move on to treatment only to go back to the beginning. Waiting for the Pathology report is particularly difficult – When I reflect on those “dark times” about a year ago … Well let me share something with you:
I am male, never smoked, active (J’aime le ski de fond), healthy … I was diagnosed with Bladder Cancer just about 1 year ago. I had a large 4.5cm x 3cm tumor removed (TURBT) on 22 July 2015. I had a second TURBT on 25 August 2015 – Doctor wanted to confirm original Pathology, make sure he got all of the cancer, and said “It was standard practice now” to have a second TURBT. I then had my 6 week induction course of BCG. After the BCG, and during my 3 month cystoscopy (18 November 2015), I had what my Urologist thought, and looked like, a sessile, high grade tumor at the original resection site. I had a 3rd TURBT on 30 November 2015. Notwithstanding that to the Urologist’s eye it looked like a recurrence, the Pathology from that 3rd TURBT showed that it was Cystytis Cystica – a benign growth. I have been clear of any type of tumor since.
What am I writing: You really do not know what type of tumor you have or even if you have a recurrence until you get the Pathology report. Although my “recurrence” looked like a tumor to the Urologist – it was actually part of the healing. Emotionally, it is difficult because it meant I had to wait and wrestle with the unknown. Another TURBT and then another wait for the Pathology.
Take heart in that your Urologist was saying that it was not a BCG failure. He is an expert and he has your best interest in mind.
If it is a tumor, it could have been because during your first TURBT the Urologist may have missed some cells. Even if it is not a tumor, it is an opportunity for the Urologist, by way of a second TURBT to make sure there are no cancer cells “left behind” – which is a good thing.
Je prie pour tout le meilleur.
God Bless
DDep
August 29, 2016 at 9:02 pm #20917Paul D
ParticipantHi Derek and welcome to BCC and your BC is very much the same as my own and as you only this year diagnosed, I am “waiting” yes that word again for a Cystoscopy after my 6 BCG treatments. I was contacted by my main hospital yesterday so it looks like late September early October when I will get that, I had my BCG treatments at my local hospital in their new Cancer Care Clinic and if you read through the BCC site you will see that in Australia yes BCC reaches out to all sufferers of BC wherever they are in the world that the BCG treatment is carried out a bit differently here. Waiting for things to happen in the BC world is a universal thing and you will not get used to it but grow strong against it and as for questions you won’t be slow the next time, write things down and have them ready I even wrote one on the back of my hand at the last Turbt and got it answered so many times by so many people. Good luck on your BC journey and read through the BCC site as there is so much good advise written by so many good people here you will not be alone.
Love and best wishes,
PaulSeptember 7, 2016 at 3:14 pm #20956Val
ParticipantDerek
Welcome to BCC. Sorry about your diagnosis. Here is the best place to be since we’ve all been down a similar road. Our histories and diagnosis might be slightly different but we are all on the BC journey. It can be scary to be on the journey but you are not alone. There are amazing people here who can help you, understand you and give you wonderful advice.
My first tumor was in 2008 with a reoccurence only 3 months later, got that second tumor removed and a third tumor came in 2010. So they often do reoccur. The first urologist I was with only gave me 6 BCG treatments, no maintenance. So when he recommended removing my bladder at the third tumor I decided to get a second opinion. I got that second opinion from a urologist from a major university hospital and instead of bladder removal we did more BCG treatments and I’m happy to say that those years have all been cancer free!
I had my annual checkup yesterday, and even though I’ve had no tumors since 2010, I still feel the stress and worry of waiting. It gets a little better as time goes on but it never goes away.
Jack Moon always says BCG = Bladder Cancer Gone and I believe him. It is possible to beat BC if we catch it early enough. BCG can definitely help – I had 17 treatments. I know.
Continue to ask questions, this place is the best for support!September 7, 2016 at 3:58 pm #20959DDep
ParticipantValerie,
Good for you to “Push” for the BCG Maintenance !!!
Of course I cannot understand each and everyone’s medical situation or be in any position to say …. But I always get a little “miffed” offline and in turn, ask myself: Why patients who are diagnosed to be treated with BCG (which means they were assessed as Intermediate Risk or High Risk) only get the 6 week induction course ? (I underscore those that have been diagnosed to be treated with BCG).
I can understand that it was less clear as early as 5 years ago whether maintenance or what type of maintenance should be used. However, in the last few years it has become quite clear that 6 week BCG induction is not enough.
References:
1) CUA “Guidelines”, July 2015, page 12, https://www.cua.org/themes/web/assets/files/nmibc_guideline_for_mem_rev_09_06_15.pdf
2) “BCG induction with 6-week instillations must be followed by 3-week maintenance instillations, as recommended in the SWOG protocol, as no other maintenance schedule has been shown to work reliably.”, http://www.freepdfhosting.com/afdbff6815.pdf , Expert Consensus Statement on BCG; Lamm, O’Donnell et al., 2015, ConclusionsThe last “eye opener” is the dearth of use of a post-op Chemo-Theraputic “Wash” of MMC or the equivalent. Of course it depends on many things including the depth of resection, the patient, the medical situation, whether the patient will be getting BCG etc. It is recommended by the CUA “Guidelines”. Further, according to Dr. Bivalacqua it is used by less than 10% of Urologists in the US. Ref. BCAN https://www.youtube.com/watch?v=8QMrcgN0HoA start at 9:20.
Anyway … Sorry about the Rant. But I thought it was a good opportunity to share some information.
Once again, Good on you, to be so pro-active about your health and your BC situation.
God Bless
DDep
September 7, 2016 at 5:23 pm #20961marysue
ParticipantNo need to apologize for the rant. I’ve asked the same thing. When I was first diagnosed in 2008 I was only given a 6 week course. I didn’t know about maintenance treatments at the time. Given my then mindset, I don’t know if I would have followed through anyhow. I was fortunate that I remained cancer free until July 2010 when a single tumour was discovered at my cysto check. Of course that meant a second TURBT with more BCG. This time I had a second 6 week course followed by 3 sets of 3 maintenance (15 treatments in all) for a grand total of 21 including the 6 I received in 2008.
I think, at least in Calgary, it has only been in about the last 5 years or so that uros have changed the game plan and have ordered maintenance BCG. I have often wondered if I had had the maintenance in 2008 would I have even experienced a reoccurrence? Of course I’ll never know and I don’t stress out about it. At least progress is being made and it seems that bladder cancer care is slowly getting more coordinated. Here in Calgary we have the establishment of the Southern Alberta Institute of Urology to thank for that. The vast majority of the uros are all under one roof and seem to now do consults with each other more frequently when dealing with patient issues.
We can only continue to hope, pray and spread the word and bladder cancer treatments will continue to improve and move forward. All the best to everyone. ((((HUGS)))) And a big welcome to DerekA!
September 8, 2016 at 11:34 am #20965rock2013
ParticipantWelcome, bladder cancer is treatable, I understand your reaction. You will experience many emotions, I felt the very same 2 years ago. In my case, no symptoms, I felt great, when visiting my inlaws in the Niagara region, I started to bleed big time, four days non-stop, spent all that time at the emergency NHS. I returned to Ottawa, had a cysto, a TURBT. Pathology report:: HIGH GRADE, Stage 3, muscle invasive (On the wall of the bladder) very agressive. I will never forget that feeling. Many people told me to think positive, it is treatable etc.. most did not have any ideas or knowledge of bladder cancer.
No time to waste, I agreed to the plan. 4 months of agressive chemo, followed by bladder, prostate, seminal vesicles and 26 lymph nodes removed. A 5 hours and 20 minutes surgery, 7 days in hospital, 8 weeks of recovery. Illegal conduit was my choice (External bag), I was 72 years old.
Now I am beginning my third year, 3 SURVEILLANCE SCANS A YEAR INCLUDING ONE YESTERDAY. While I have not been told that I am cancer free, previous scans did not show any mass or tumors. I will be glad to answer any questions. Welcome again, it is treatable. Sam
September 8, 2016 at 6:28 pm #20966marysue
ParticipantHi DerekA:
I missed the comment earlier about the “black cloud”. I was first diagnosed in 2008 with multiple TaG3 urolethial carcinoma tumours and one CIS (Carcinoma Insitu tumour) What the TaG3 meant was Ta- superficial, G3 meant high grade. So for me it was a good news, bad news scenario. Good news of no invasion anywhere but bad news that the tumours were high grade meaning that I was at risk for progression should I experience a reoccurrence. I coasted along after the TURBT and 6 BCG treatments in 2008 until July 2010 when a single TaG3 tumour showed up on my cysto check.
I was terrified at the reoccurrence because I hadn’t connected with Bladder Cancer Canada or anyone else yet about BC and was terrified from what my uro had previously told me. Thankfully the tumour turned out to be the same stage and grade. I was followed up with 15 more BCG treatments. My reoccurrence was in a totally different spot, on top of the right side of my bladder. Previous tumours were on the bottom left and right sides and 3-4 on the back wall.
Needless to say the reoccurrence set me back mentally big time. I too, felt like I had a really big cloud over me and that persisted until the second lot of treatments were done. I found connecting with others on this site and doing lots of special things for myself went a long way to helping me get out of the funk I was in. Depression with cancer is common because of all the uncertainty.
Whether your surgeon missed a few cells previously or the tumour had already what some refer to as “reseeded” itself, we won’t know. The good thing is that it has been found and will be dealt with despite the hassle of having to do it all over again.
The bladder cancer journey is best described as a roller coaster ride emotionally and physically. If your funk doesn’t lift, I strongly recommend seeking professional help. Having a good mindset is crucial in this battle. I personally found when I was in a black hole, everything was worse – from drug side effects, daily living, to dealing with medical staff. Hang in there. Stay in touch with us and let us know how it goes. (((((HUGS)))))
September 9, 2016 at 3:22 pm #20967Cancer Survivor
ParticipantI was diagnosed back in October 2014 – had BCG initially but did not “work” Second round was BCG & Interferon – I am “cancer free” right now. Will be having a cysto in October – hopefully clean and will continue on with the therapy for what I understand is 3 years. Lets hope we got it. By the way I just turned 60. Keep the faith and I hope everything works out for you.
September 9, 2016 at 4:37 pm #20968shelties
ParticipantHi there Cancer Survivor, welcome to the forum, but sorry you’re here because you have/had bladder cancer. Glad to hear you are in a good place right now and hope it continues for you. There are very well informed people on here and there are some great resources available to learn as much as possible about bladder cancer and I’m sure you know what they say – knowledge is power. You give your age, but cancer doesn’t discriminate, although bladder cancer tends to show up in middle to late age persons as a rule. I wish you well in your next cysto and hope it is an “all clear.”
Take care and stay in touch on the forum and let us know how you get along.
LorraineSeptember 10, 2016 at 6:38 pm #20971DerekA
ParticipantMany thanks to all of you who have responded to my introductory post. Your shared experiences, information, and support are very much appreciated!
When faced with a difficult situation, I find that I respond best if I try to be proactive. So joining Bladder Cancer Canada was a first step. Getting my endorphins flowing is important; so last week activities included a day’s kayak in Parc Mont Tremblant, biking with my wife on the Parc Linear, a few days of doubles tennis, and thank goodness, a day of rain (and relaxation). I like to know why/what the doctors are doing, so my wife and I have read several articles by CUA, NHS (England), BCC, etc. And this Wednesday evening, we are attending the BCC sponsored Forum in Montreal. Socially we have been quite busy, with family and friends providing much encouraging support.
All this to say that I (we) are facing the next round of treatments with a very positive outlook.
…derekSeptember 12, 2016 at 10:27 am #20979Rick B
ParticipantHi Derek,
Glad you linked in to BCC. There are many many success stories regarding BC survival. As one other posted above…BC is treatable. I was diagnosed mid 2012 and after 2 recurrences have been cancer free for over 3 years. Like many I had BCG treatments after each TURBT…the last series of treatments was BCG + Interferon.
You are in good health otherwise and keeping busy/active is the best….and, not enough can be said about continuing the socializing with family & friends.
Wishing you all the best with your next TURBT…stay strong…stay positive.
God Bless.
Rick
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