Cancers differ so does treatment

16 years 9 months ago #5786 by mznoregrets
Replied by mznoregrets on topic Cancers differ so does treatment
Hi Melodie :) and everyone :)

The only comfort I can offer Melodie is my friendship, compassion and comraderie thru this detour we find ourselves on. ((((Hugs)))) on those chemo days I know all too well as you know I am 2 monthes thru my chemo also. I am here :)
To addres the original topic here - that there are different stages and grades of BC which do dictate various treatment plans and prognosis - all relating directly to the anxiety levels associated ith a DX. My greatest anxiety has arisen from not just a T3aN0M0 DX,RC, neobladder....but the manner in which it was handled by Drs. My 1st uro made a recommendation for BCG in January. Had I trusted him implicitly, I would be stage 4 now. By March 13th, my cancer had gone thru the muscle wall. There is no gaurentee a Dr is accurate - we must be vigilant and advocate tenaciously on our behalf. There are far too many folks who have trusted a DX of superficial or that the cancer was adequately treated only to find they did not do enough and pay the ultimate price for it. Please don't think I am saying everyone with any kind of cancer needs to become axiety ridden - I am saying each of us needs to adequately explore our DX and options with atleast 2 opinions to assure proper care and treatment is given. Ignorance doesn't pay off with BC.
Melodie, one "thing" that seems to have helped my spouse and I as we get thru this stuff is that I have more like a network of help rather than leaning on my husband exclusively. My best friend, Michelle takes me to chemoon Mondays. My Mom comes over and helps with more of the food and helps me during the cisplatin week of nausea. ( No one cooks like my Mom :) My husband is best with Drs appts and decisions - he is an electrical engineer and stays more focused and less emotional than I. Other friends have made a niche of helping and befriending that best suits them. The American Cancer Society matched me up with a lady who had bc a few years back with diversion and chemo. She and I talk on the phone and it helps to know there is a life on the other side. Maybe you can get matched up out there? It has helped.
I am glad you are exploring your options and asking questions, being sure. I know for me at this point I need to just keep plowing through til chemo is over. The chemo has messed with alot - my hearing, feelings in fingers and feet, sores in my mouth, nausea etc. I am kind of afraid to really make decisions not really being sure if it is just the chemo getting to my brain.
I hope you feel better knowing you are in my prayers and not alone :) Holly

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16 years 9 months ago #5784 by Rosie
Replied by Rosie on topic Cancers differ so does treatment
Pat, I certainly understand that you and those others who have had invasive bladder cancer and cystectomy would be more invovled in the seriousness of a bladder cancer diagnosis. I am trying to give some balance to the bladder cancer diagnosis. It seems there is constant posts about invasive bladder cancer and the threat of low grade tumor suddenly becoming aggressive which seems to keep people in a state of anxiety. I am presenting here my seven year case scenario to help balance and ease the minds of those so overwrought with fear. Knowledge and informatin obtained through pursing some of the points I stated in the original post on this subject should help people feel empowered. I want to state further, that not only do we need to go to those urologists very versed and knowleagable about bladder cancer but also those urologist that specilize in our particular type of bladder cancer be it invasive type or superficial type.

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16 years 9 months ago #5783 by Melodie
Replied by Melodie on topic Cancers differ so does treatment
OK....is there anything anyone can say to help me feel better? I greatly appreciate the comments from each of you and I recognize we cancer warriors need to be vigilant and strong.....but doesn't all this mnformation sometimes just do more to confuse and frustrate us. Someone like me maybe has too much time to think. I woke at 3 a.m. wondering if I should reconsider surgery and just wait and see. I mean considering how the chemo has affected my bladder, the poor thing wouldn't know it was under stress, even if it was.

This Friday I am at the end of my second month or cyle of chemo....I think I have tolerated it well all factors considered but it is wearing me down and I am getting shots every week now for low cell counts. I'm not sure I want to go another two months of it as the doctors recommend....esp. if it begins to affect my fingers as I must be able to write. I felt I was doing the right thing agreeing to the chemo as I didn't want radiation and BCG was not an option for me, or so I was led to believe, my cancer being too aggressive.

I have an appt. with my surgeon for late June in Seattle to plan for surgery sometime in September. I trust God will see me through this but I need some emotional support from someone down here.

My spouse does not want me to have the surgery....I think he is still into denial to a large extent as he is reluctant to talk the subject of my health in detail and has no desire to meet or talk with the surgeon. All he can say is "I just want my wife back". As you might guess, he doesn't handle change well....never has.

He was not there for my TURB either, but that was OK as he is terrified of hospitals. If he cannot be calm, compassionate, patient and supportive, I do not want him there, or anyone else for that mattter. I have even told him and a best friend that I cannot afford to spend time with negative people....they are too draining. When I have to listen to them whine to me about the simple things of everyday life that can be annoying....like thier jobs, traffic, taxes, a new scratch on their car.......it just makes me >:( angry.

Since beginning this journey, I have found that some of those who I thought were closest to me, in fact, are really not here for me when I need them. And since I live in a rural area, 22 miles from any city, and 70 miles from where I will have the surgery done, I have to count on emails, phone calls, and these websites to help me move forward in a positive way. And yes, I am a person of faith and pray daily but sometimes I just need a hug.

But no one down here can offer me better emotionl support than you folks who have been there and done that.....fought the battle and continue to fight it.....you are a brave and noble lot and I applaud you for your strength, courage and kindness. Please keep it up as there are so many others like me out here looking for direction and hope. Well, I must close out now before I :'( cry. Sometimes that helps and sometimes not.

A few years back I met a very charming English gentlemen and since both of our business' were going thru economic struggles, we were wondering if we would continue to have jobs. To cheer me up, he said, "you know what we say in England.....keep your pecker up." Well, that is what I am trying to do. Thanks for listening. Melodie

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

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16 years 9 months ago #5778 by wendy
Replied by wendy on topic Cancers differ so does treatment
Great post Rosie, thank you for making those points.

Pat you said,"To assume that all uros have the ability to diagnose a benign tumor with the naked eye is fiction. " That's true. When doctors are relying on their experience alone and skipping a biopsy it is almost always in the setting of recurrence; since most recurs are of the same grade, stage and type as the previous tumor(s), they are pretty safe with most of those judgment calls. But experience counts.

You may be right about 4 opinions giving 4 different answers, but what are we gonna do? That's the game, and then we must choose the one that feels right, after we've educated ourselves as well as possible in the situation we find ourselves.

Cancer and it's treatments are very often a gamble, with our lives at stake. That is some serious, deep stuff!
Wendy

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16 years 9 months ago #5776 by Patricia
Replied by Patricia on topic Cancers differ so does treatment
Rosie...we've got a lot of variables here. Not all urologists, pathologists and surgeons are created equal. Of course its prudent to be involved in your prognosis but at the same time if you go to say 4 different facilities its not uncommon that you just might get 4 different opinions. What happens when the seemingly "nuisance" tumor decides to get a little more aggressive? We have diligent people on this site who have done their job but guess what...they were with the wrong doctor who just assumed those recurring tumors were still a nuisance and fulgerated them out without getting a sample for pathology. To assume that all uros have the ability to diagnose a benign tumor with the naked eye is fiction.
I'm happy that watchful waiting has worked for you but its not for everyone nor is one opinion where cancer is concerned. Pat

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16 years 9 months ago #5774 by Rosie
Cancers differ so does treatment was created by Rosie
DISTINGUISH IT - CANCERS DIFFER AND SO DOES TREATMENT
To the uniformed, a cancer diagnosis conjures up immediate thoughts of disfiguring surgery, chemo, radiation, hair loss, possible spread throughout the body, pain and death. My first doctors did nothing to minimize my anxious thoughts nor did they explain and distinguish the treatment and prognosis for my TYPE of cancer as compared to the other 15 plus TYPES possible in my bladder. I, like so many others, was caught up in the cancer hype perpetuated by the public news media. Often times a cancer story is excellent in telling the feelings, concerns, treatments and prognosis of that particular person’s big C journey but also serves to perpetuate and generalize the negative hype of that diagnosis because it lacks distinguishing characteristics of their particular KIND of cancer. I am a 7 year survivor of bladder cancer who has had 4 recurrences yet no systemic chemo nor radiation In studying my cancer and six family members with various KINDS of cancer, over the last 7 years , I learned it is important to distinguish the KIND - where in body it is located, the TYPE - there are many types of cancer possible in that body part ranging from very aggressive and threatening down to a cancer TYPE this is considered (like mine) just a nuisance. Then there are two other factors that are part of the cancer diagnosis. Those other factors are to know the GRADE and STAGE, although in my opinion not as important as the TYPE because the GRADE and STAGE are subjective and dependant on the skill and the ability of the pathologist analyzing that tissue biopsy. I was originally diagnosed as a T1a grade 2 so had BCG treatments. I was then downgraded 2 years later when I moved out of state and to another urology group. I learned there is often a downsizing from a T1 when another pathologist or history of recurrence show the original grade was incorrect. I know it would be a great service to everyone if the reporting of a cancer diagnosis and/or death through the new media were more detailed as to the KIND, TYPE rather then the past and current trend of reporting that someone died of CANCER. Once you have a few years experience as a cancer survivor, you find yourself asking “What KIND and TYPE of cancer did they have?“ I have had discussion with other long term informed cancer survivors who can answer the KIND, TYPE, GRADE and STAGE immediately. All diagnosed should know that about their cancer in order to plan the right course of treatment and prognosis for their particular cancer journey and to avoid unnecessary radical surgery, over treatment, anxiety and depression. Many cancers are considered a chronic disease that is safely maintained without extraordinary debilitating intervention. Here’s some information I would like give the you in addition to the bladder cancer info. For WOMEN and some men: Did you know that a TYPE of breast cancer known as IN SITU is being questioned in many medical circles if it should even be treated? Cure magazine did a very informative article on that controversy. You can read about it on line a www.curetoday.com. For MEN a prostate cancer diagnosis needs to be analyzed as to the Gleason score given it from the biopsy before taking any course of action that is radical. Often times watchful waiting can be employed safely and no treatment ever given. The information and education is available through support groups and forums such as this on the blc web cafe that are specific as to your KIND of cancer. Cancer can not and should not be generalized. Many have died, had chemo or radical cystectomy from my KIND of cancer . Which is bladder cancer, their TYPE and GRADE, however, differed from mine. I received my distinguishing information a couple years after being diagnosed when I found Wendy and www.blcwebcafe.org. It eased my panic and sent me on the journey of deciding what is best for me. We are in charge of our health. So know what you are dealing with through getting written copies of your physician notes, TURB operating room reports, your CT or MRI scans and your written pathology report on your cancer or your loved one's cancer before taking radical action. Many cancers can be treated conservatively. Awareness, to me, also means knowing and letting others know about the distinguishing characteristics of cancer known to me as KTGS. Not all cancers are the same. Neither is the treatment and prognosis.
Rosie Ambs KIND - Bladder - TYPE Papillary, transitional cell carcinoma -
GRADE 1 and 2 - STAGE 0

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