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Cancers differ so does treatment

13 years 3 months ago #5848 by Rosie
Melodie and all, perhaps I posted this under the wrong category. Maybe I should have posted it under superficial non-invasive rather than newly diagnosed but I am so hoping to immediately reach those who are surfing the web looking for histories of someone with a similar type and grade as theirs and that person's experience over a longer period of time. I believe my 7 year history on low grade papillary is quite representative of the majority of those with same type and grade. That belief is based on fact because I am still in touch with several of those diagnosed with low grade papillary many years ago. I am reluctant to have this forum be only for those with high grade or invasive bladder cancer diagnosis as there are so many needing low grade superficial information also. In the past, I have dropped out of this forum feeling my bladder cancer experience is so minor compared to so many others. Now I realize, my bladder cancer history can empower and encourage others. I hope others with superficial low grade will also participate in this forum to facilitate a great balance on this subject. Rosie

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13 years 3 months ago #5821 by Melodie

My apologies. No offense intended. I over-reacted to what was written because it just raised my concerns about trusting any of these doctors. About 20 years ago I had a hysterectomy because I believed the doctors, and afterwards the public was told that many were unnecessary. As my date for surgery draws closer, I seem to grow more anxious about whether or not I am doing the right thing. I now understand that is a normal reaction. So after readying your first note, my first thoughts were, "maybe the doctors are wrong and I don't really need the bladder removed....maybe they rated me too high.....maybe the chemo is enough. I don't mind the doctors being wrong if it's in my favor.

You don't kow this, but I live with a man who has never trusted doctors and has little if anything good to say about the medical profession. (I am amazed he actually likes my concologist.) He thinks the medical profession is big business, and it is, but I am sure there are doctors out there who are honest, and truely want to help people and do their best to save lives. By nature I am a very trusting person but this journey has really given me reasons to ask questions and have doubts.

Anyway, I just want to say I appreciate your intentions of sharing such worthwhile information. You are right that it is so very critical to understand the terms and the different variables involved in our individual, particular type of cancer.

If not for this website, I am sure a fair number of people would just accept whatever the doctors tell them because the word "cancer" initially instills us with terror and we want to act quickly. But we should never act so quickly that we don't get at least a second opinion and do some investigation of our own. Thanks for all your input, really. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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13 years 3 months ago #5805 by Rosie
Gee, my starting this subject was meant to encourage the newly diagnosed of papillary superficial low grade bladder cancer yet not minimize those on a much more intense blc journey. There is much on this forum daily about invasive or high grade blc and the problems and treatments connected with that. I am not one of that grouping but certainly feel compassion for you all. I also feel compassion to those were like myself newly diagnosed . When I was first diagnosed I was scared terribly because all I read on the web and other sources was about invasive bladder cancer or that superficial could become very aggressive and invasive. Couple that with two different urologists making statements to me after a cystoscopy but prior to any TURB or biopsy “we may have to remove your bladder.” sent me scrambling to do research on the web before deciding what might be the best course of action for me. Pat did the same. That is the reason it is so important to help give all a proper perspective on their tentative diagnosis. I was like Melodie, anxious and feeling terrible. My heart reaches out to yours., Melodie. I am making an effort here to give info to those logging into this forum who have a similar TYPE and GRADE.- Papillary, TCC grade 1 and 2 or TA TCC 1-2 as mine to give them another perspective of bladder cancer now that there are better stats and long term trials on superficial low grade papillary bladder cancer. I hope I am allowed to do that and others of my type and grade will join in to encourage others like us. The written reports I suggested everyone have in their possession - physician notes from cystoscopy, TURB hospital operating room notes, pathology report, CT or MRI written reports, IVP written reports will help those diagnosed with bladder cancer will allow each of us to compare apples with apples when discussing on this forum. In this case the apples to apples being type to type, grade to grade. A periodic biopsy is important to monitor your growths I am not a proponent of burning out the growth with no tissue sample. Rosie

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13 years 3 months ago #5800 by Melodie
Thanks for all the reassurance....I needed to hear this. I think sometimes that the effects of the chemo just have me doubting myself and second guessing and fretting over what to do, that sometimes I just feel like calling a halt to it all....just wrap myself into a nice little cacoon....and go into my own state of denial. But of course I can't do that. And so when I'm in trouble now, I raise a flag but I don't want to surrender, least ways not to cancer. I just needed to have someone help calm me and I thank all who came to my rescue today. I feel so much better emotionally and the shot today didn't even bother me....least ways not yet.

Of course I will continue to enlist my husband's support. He has a lot of very good qualities but coaching or nursing are not on on the list. But I will always try as long as I think there is possibility of change. Maybe he just needs more time.

Anyway, I am just so thankful for all the old and new friends I have recently made. I can't imagine going on this journey alone. It certainly is an adventure and when I have mine behind me, I will try my best to help others who must travel the same road. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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13 years 3 months ago #5798 by Patricia
Melodie....you are not alone. We all went through that anxiety, disbelief, lots of tears. Believe it or not we're not trying to add to that anxiety...everyones journey is a bit different. We all want you and the others seeking help to know your options and get on the right path and then be comfortable with your decision. When i was first diagnosed I hit every site i could find on bladder cancer...didn't have any idea what the heck i was reading...the statistics scared the bejeebies out of me. Since my one and only symptom was gross hematura I was so frightened i let the first uro that my internist recommended do my TURB. After gathering what was left of any remaining brain cells I decided to check out all the major cancer facilities..read everyones bio...and was on a plane in 7 days to NYC and Memorial Sloan and a second TURB. That was a good decision as my original surgeon had left the margins and Dr. Herr got them out. That changed my pathology a bit but i was still a Stage 2. I talked with many other surgeons and also with the Mass Gen team. I made my decision and i stuck with it...didn't mean i wasn't scared to death...thats normal. I cancelled 3 times....thats not normal. What i'm trying to say is we've all been where you are emotionally. I'm only sorry that your husband is in denial....you need his support. If you have anyone close to you that can be by your side and give you lots of hugs get them in there. I wish i had some suggestions to bring your husband around....thats very sad to me. My husband didn't understand any of it either but he never left my side. Can you have a heart to heart with him? Melodie i do think you are going to see the light at the end of the tunnel and we'll see you through it. We'll all give you lots of hugs..........Pat

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13 years 3 months ago #5795 by Melodie
Hi Everyone,

Holly, Rick (thanks for your kind notes)

I guess the best I can say is that I started to come unraveled this week and only getting four hours of sleep last nite, just added to my discomfort. And Holly, we must be on the same page as far as chemo goes....I have experienced all those issues that you noted. I did realize the other day that my hearing was off but didn't credit it to the chemo. And yes, I double check myself because I wonder how it affects the brain. I definitely feel some days like I'm losing my mind. A good friend told me of an article he was going to send me in regard to the affects of chemo....will share when I receive it.

Anyway, went into the treatment center for another shot today but first asked for a "hug" from the nurse. I got the hug and got some talking going and more hugs, I am feeling better. :)

I do not look for or expect my spouse to provide me with constant attention or support but one genuine hug daily and a few positive statements like "I know you can do this.....everything will be OK.....etc." would be appreciated. I recognize he must be scared but of course he would never admit it and really won't talk much abut his feelings nor does he really want to hear about the details of my medical issues. Like most guys, he just wants to fix whatever is broken. And of course, in this case, he can't so he is angry and frustrated.

We waited 25 years to get our kids raised so we could build our dream house which he put his heart into and six months later I am diagnosed. He likes to have control and he wants our retirement years to be just as he envisioned them to be. He wants me to say that the surgery is not necessary and life will go back to what it was for us, and that just can't happen. Cancer changes so much and we adjust or we break. I know he tries but he doesn't know how to meet my emotional needs so I look for that support elsewhere. That is why I had to vent on this website this morning and then seek out others at the treatment center who could offer me some comfort.

If any of you guys out there have any advice for me, please let me know how you think I can best help him to move forward in a positive way. Thanks much. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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