Still scared and worried

[Deb55]

Hello all,

My husband was diagnosed in April 2018 with T1G2 bladder cancer. He has already had 2 TURBT and started BCG treatment, he has had 5 up to now. I have been reading up on Bladder cancer and the treatments. And even though I keep reading that my husband has early stage bladder cancer and can be treated easily and successfully I still worry and overthink every thing. What if ……. what if ……what if. I am glad I found your forum. Anybody out there with this same diagnosis T1G2, can you explain me exactly what Gr2 means? Thanks a lot in advance.

[Jack Moon]

Grade1, 2, 3 is a Pathologist using the 1973 -2003 method of grading bladder tumors.
In 2004 this grading system was changed to either low grade and high grade.
So below this was the paper given to me in 2005 from my Urologist that explained the differences between the grades.

Grading is how the cancer cells look under the microscope compared with normal cells. The grade helps your doctor to decide if you need further treatment after surgery. You are likely to need further treatment if the cancer is grade 2 or 3.
Grade 1 – the cancer cells look a lot like normal bladder cells. They are usually slow-growing and are less likely to spread.
Grade 2 – the cancer cells look more abnormal and grow slightly more quickly than grade 1 cancer.
Grade 3 – the cancer cells look very abnormal. They are more likely to grow more quickly.

I like your husband, underwent BCG treatments, including a 1 year maintenance rounds. I did have 2 very small recurrences both times Grade 1. I have been cancer free now 11 years.
I wish you and your husband all the very best, and any time you have questions do not hesitate in posting here, we have several members that are very happy to share their experiences and knowledge they have gained about bladder cancer.
Jack

[Deb55]

Thanks Jack for your reply. Is T1G2 then considered to be aggressive?

[Jack Moon]

Hi Deb
That would be a question that I am not qualified to answer. You would need to speak to your husband’s Urologist.
I would also recommend you get a copy of the pathology report to insure of the stage T1
All the best,
Jack.

[Deb55]

Thanks Jack. T1G2 was the diagnosis at both TURBt’s. The urologist never mentioned the word “aggressive”. He just said that there was good news and bad news, the bad news was that the tumors(multiple) were malignant and the good news being that it was non invasive. And Grade 2 was a good grade??????

But I will take your advice and ask our urologist. Thanks again.

[Rick B]

Hi Deb,

Glad you reached out to BCC. There are many here who have gone through or are going through what your husband is experiencing. Ditto on Jack’s comments…your URO is the best to clarify your husband’s diagnosis.

I was diagnosed June 2012 and after 2 recurrences and a total 20 BCG treatments I am pleased to say that I have been cancer free since late 2013. I had a low grade tumor along with Carcinoma-In-Situ (CIS). CIS is considered aggressive and while not a tumor it usually develops into such if not treated. So, BCG treatment was recommended for me. I tolerated the treatments well with mild discomfort after each…slight pain during voiding and on one or two times a little blood in the urine which cleared up after a few hours. I did have flu/cold like symptoms (feverish, slight sort throat, headache) which generally disappeared by day 2 after treatments. I was placed on “bladder watch”, my Uro’s words, at 3 month intervals for 2+ years, 6 months intervals for 2+ years and am now on annual follow-up.

Wishing your husband the very best…stay strong…stay positive…God Bless!

Keep us in the loop.

Rick

[Deb55]

Hi Rick,

Thanks so much for your reply.

My husband just finished his 6 week BCG induction and has a flexiscoop (I think that’s the name of the procedure) on August 31st. His urologist wants to see if the BCG is doing it’s job. It’s a scary time and I am glad I found BCC, lots of good info and encouragement. My husband is very optimistic and positive, he is just going about his daily life like nothing is wrong. I, however, am terrified, fearing the future. Sorry to be such a cry-baby.

[marysue]

Hi Deb55:

Welcome to Bladder Cancer Canada but sorry that you have need of us.

I wish you and your hubby the best.  I echo what has already been said.  Your uro is the best person to clarify your hubby’s diagnosis.  I was diagnosed in 2008 with non-muscle invasive, high grade but was stage 0 or Ta not T1 which is a little less serious if one can actually think that way.  My official rating was TaG3. My uro gave me a similar answer. I had a good news – bad news situation. The Ta as mentioned was the good part meaning that the cancer was very superficial but the not so good part was that the cancer was high grade and he did consider it aggressive and therefore recommended BCG treatments in the hopes that it would help prevent recurrence and/or prevent it from progressing to a more serious stage should it recur.

I’ve had 21 BCG treatments through 2008-2012 and have been cancer free since.  BCG is not always the easiest treatment regime but what kept me going was that I was fighting to save my bladder and my life.

It is normal to be scared, worried, upset and/or confused.  It is also very easy to overthink things and our thoughts are like a hamster on a wheel and it never stops turning.  I think that you are reacting this way because you love and care for your hubby very much.  No one wants to think about the worst that could happen but we can’t help it.  Our minds just tend to go there. For a long time I fretted about how my hubby would handle things should something happen to me.  After a few discussions with him, I realized worrying wouldn’t get me anywhere and I had to just let go and hope for the best. Easier said than done, I know but I had to do it to keep my sanity.

The best thing that I can suggest is do your best to keep busy with the day to day and take things one step at a time and not read too much stuff on the Internet.  If you read the wrong stuff or stuff that you don’t  understand it can be down right terrifying.  I made that mistake and now always caution others.  Stick to what pertains to you and your situation and don’t get ahead of things.

And…as always we are here to offer support and answer any questions.  If we don’t have the answers, chances are someone will know where to find out.  All the best and please stay in touch.  (((((HUGS)))))

[Deb55]

Hi marysue,

Thank you so much for your comforting words. Deep down I know exactly what you all mean. My biggest mistake was “Dr. Google”……..I have read some horrifying stories about what all “can” happen etc.etc. I am so glad I found you all, I truly am. I visit this site often to read about other people’s experiences with bladder cancer. A lot better and informative than those scary statistics and survival rates and so on. Thanks again marysue and Rick and Jack. Will keep you all posted. Lots of love all the way from Aruba.

[Deb55]

Hi all,

My husband had his first cystoscopy after completing his 6 BCG treatments. Results were dissapointing to say the least. His urologist found 3 small growths(smaller than the initial) tumors. So I guess the BCG failed or his cancer is more aggresive than initially was diagnosed. He is scheduled for a 3rd TURBT on September 25th and if the cancer has progressed to muscle invasive (initially T1G2) we are facing bladder removal. At least that is what his urologist said. He did not even mention what he do if the diagnosis remained T1. He was actually very negative and gave me the creeps. I am scared and worried. My husband remains positive and vows to try and hold on to his bladder as long as possible. Anyone on this forum have any experience with a 3 month recurrence? Should we get a second opinion? Please someone please talk to me. This is so upsetting.

[Jack Moon]

Hi Deb55

Sorry the BCG has not worked so far. You say the initial diagnosis was T1 Grade 2 which T1 means the depth of the tumor(s) was into the lining of the bladder.
Again I would have that checked to be 100% sure, as Grade 2 normally is TA or just on the inside wall of the bladder.
If you have a copy of the pathology report you could email it to me and I will have that checked. I will private message you my email address.
Going forward try to stay positive, and see what the results are for the next turbt. There are other options than removing the bladder, but that will depend on the stage and grade of the recurrence tumors. Insure you receive a copy of the pathology report after the next turbt.
All the best,
Jack

[marysue]

Hi Deb55:

I’m sorry to learn that your hubby had a recurrence despite the BCG treatments.  As Jack said it will depend on the results of his TURBT to determine if the cancer is progressing or the recurrence was at the same stage and grade. I recommend taking Jack up on his offer to have the pathology report checked. It wouldn’t hurt to get a second opinion from Jack’s source.  You are also entitled to a second opinion for anything else as well. People have done this especially when facing the possibility of getting their bladder removed.  It is a big surgery with its own set of risks and not a surgery to consider undergoing unless it is the best option for you.   ((((((BIGHUGS))))))

[Rick B]

Hi Deb55,

What you and your husband are going through is very normal. It was well over a year before my bladder cancer situation was under control. So, first and foremost stay strong, stay positive…you’ve received very good suggestions/recommendations from Jack &  MarySue. They have the most experience on this forum and you can certainly take comfort in the advice you receive from them.

I’d like for you and your husband to remember that non-muscle invasive bladder cancer is not life threatening. It is certainly very serious like all cancers but the success rate is very high.  Always hold on to that thought as you continue this journey. Your Urologist is typically the best one to explain what to expect. If you are not comfortable with that then you should seek a second opinion. A good URO will not / should not object to a second opinion.

After my 3rd TURBT, my URO and I agreed to try BCG + Interferon. I’m not sure if adding Interferon was the answer but I was dealing with a 2nd recurrence and the possible presence of CIS which is high risk if not treated. In my case, it worked very well.

I wish your husband the very best outcome…again, stay strong, stay positive…God Bless.

 

Rick

 

 

 

[Deb55]

Hi there all,

Just got the pathology reports back from the 3rd TURBT, turns out to be recurrence of the T1G2 cancer. So thats the good-ish news. However our urologist is still pushing for bladder removal. We still want to at least try another round of BCG before considering bladder removal.  ANy advice Jack, RickB, Marysue??

Greetings to you all.

 

 

[Rick B]

Hi Deb55,

The tumor has not changed (stayed at T1G2) meaning it is still in the lining but not in the muscle…Urologists sometimes suspect that recurrence was caused by re-plantation…not sure if that’s the right term but my Uro said that cells that were not removed during the initial TURBT could develop again. From your initial posting I am not sure if BCG treatments followed your husband’s 1st TURBT or the 2nd.    If you sense having another round of BCG is what you want to do,  then I would go for that. I would broach the subject of BCG + Interferon this time around. Also, you may want to consider a 2nd opinion. Before my last round of BCG which by the way was BCG+Interferon, I made up my mind to have a second opinion before deciding on bladder removal. Like your husband, mine was non-invasive and so I felt waiting 3 or 4 weeks to get a second professional opinion was not putting me at too much of a risk. Ideally your Urologist is experienced and importantly has a lot of experience with Bladder Removal, if it turns out to be. The folks at BCC can help with suggestions for a 2nd opinion should you decide on that.

Wishing your husband the very best…stay strong, stay positive & keep us in the loop.

God Bless.

Rick

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