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My bladder cancer history by MSSMR (a start)

12 years 7 months ago #11541 by Maria
Very sorry to read your experiences, women are too easily dismissed these days, especially by male doctors who are too quick to label us women as 'neurotic'
I hope you are now receiving the good care and attention that you deserve and wish you well for the future.
This forum is a wonderful source for support and advice. I have been truly blessed finding this place as I have received the support and encouragement that I have not found elsewhere and I know you will too.
Maria x

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12 years 7 months ago #11533 by mssmr
Thank you for your wisdom, generosity and encouragement momof4. Thank you to your husband for the ideas for releasing and reconcilation, too. I appreciate all the specific ideas for trying to get the best care I can in my situation.

I'll write more soon, probably tomorrow morning where I am. Right now, it is about
6:45 PM in Mississipi where I am --

appreciatively -- mssmr

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12 years 7 months ago #11515 by momof4
I am so sorry that you are feeling like you are dismissed as far as the medical professionals in your area. Be sure to tell the Dr. on your next visit these concerns. It seems like you were brushed off so many times when this disease should have been detected. It just goes to show that you were right all along and knew that something was wrong...Don't let them push you around anymore...if the answers you are getting don't add up, get another opinion. I think it is always important to have someone else review the reports and give their opinion.

Just because someone is a Dr. doesn't mean that they were "A" students...some could have gotten a "D" and still received the necessary Certifications.

If you are not comfortable with any Dr. my suggestion is to get a new one. They are your first line of defense in this fight, and if you are not 100% behind them, or they behind you, it just makes this fight more frustrating than it already is. With stage 4 cancer your Dr. or their team should:

1. Be available 24/7 for you.
2. Pain and bleeding should be addressed immediately, and never wait for an appt.
for more than a day at the most.
3. If you have to go to the emergency room for any reason make sure they know you
are coming and why, so they can have a bed ready, and the correct people are available too.
4. Don't leave a Dr's office with un answered questions, and never let them rush you.
5. Keep copies of all your records, scans, pathology reports,and bills. I actually have my husbands in a briefcase that is for cancer only. I file things only when they are completely addressed & paid for.

I know when you feel like you are not being heard it is so very frustrating! Don't take no for an answer, and never let them see you sweat! I can tell by your posts that you are a fighter and a survivor. You can do this. Don't take it sitting down, and take no prisoners! Fight the Fight! and don't let them take the fight out of you!

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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12 years 7 months ago #11508 by mssmr
Wendy -- Thank you for your compassionate posting. I would be happy --
now that I have started to share my story (starting to share was not
easy for me) -- to re-write for Trench Tales. What is the link? I think I saw it once, but it isn't apparent to me now. Are there instructions there?

What I really do not understand is why, when I reported painful urination with blood to at least six primary care physicans and nurse practitioners starting
in the 1980s, all but one seemed to act of the hypothesis that is there was no infection (even if there was blood)I was imagining it or we could "wait."
The nurse practitioner who was trying to figure out what was going on (I seem to remember the term "inflamation" and reporting some pelvic discomfort as well as there being some relatively minor abnorality in a CBC) left practice at the time of hurricane Katrina and I got back on the cycle of "waiting" with the new doctor (who soon retired). The third dr. did mention cancer but talked about waiting for several
cycles of antibiotics before sending me to a urologist. That didn't happen because I
got an emergency referral to a urologist when I was hospitalized. I really think I should add this. Once in the hospital, I was asked if I was experiencing any anxiety. I think I said something like: "Who wouldn't; anxiety seems reasonable when you are hemmoraging." Later, when an MD strange to me did rounds, He asked:
"Would you say your major issue is anxiety?" I remember saying very clearly and rather cooly, "No doctor, it is the frank bleeding that brought me here."

I wonder what I could have done to break through the assumption that I
was imagining or overreacting to symptoms. I do tend to react to stress
by extreme calm and I do tend to maintain a smiling presence. I am pain
tolerant. (I used to have teeth filled without novocaine.)

A couple of times in the past, I have "acted more distressed
than necessary" in the emergency room so as to not be disregarded (e.g., when I was having a tubal pregnancy rupture). And it worked to get me attention.

This seems profoundly ironic to me. Because I am calm and controlled, I am
taken to be unreliable, overreacting or dillusional?

I only hope some other people can take caution from my story. I hope some of them
are in the medical profession.

MSSMR (earned Ph.D. by the way)

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12 years 7 months ago #11450 by wendy
Hi,

Wow...it sounds like you have may have had bladder cancer for many years without it being correctly diagnosed. This is one of the most serious aspects of bladder cancer that everyone should hear and be aware of, delayed diagnosis in women. It's arguable the most serious failing in the field of urology, or gynecology...not listening to women's symptoms or taking them seriously enough to rule out malignancy in a timely manner. In fact, you could be the national poster child for this awful state of things.

I'm so sorry you were a Katrina victim. What a mess that all was and still is. I suppose we should count you lucky you at least got an RV. So many people I know from that area (I lived in Key West for years and know of lot of folks from New Orleans and Florida) are still living in damaged homes because there aren't any workmen available in the Keys! Like no floors, etc.

And as you pointed out, many professionals had to just up and leave the area.

MSSMR, if you would be kind enough to write your story for us, I would like to put it up in our website's Trench Tales, to immortalize this problem, bring more awareness to it and hopefully convince other women reading it to know the 'syndrome' and not be given the run around. I am so fed up with this happening to women I could punch somebody.

At least your doctor is co-operating with DFCI and they are tops. I wish you success with the next round of chemo. Hang in there, and keep in touch.
Wendy

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12 years 7 months ago #11390 by Zachary
Experiences like this are so sad, so tragic, that I don't feel qualified to say anything except I wish you well, I'm sorry you are living through such an ordeal, and I hope your story can help others.

As far as I'm aware, while a healthy diet can help with your blood count, the urgency of getting it close to normal during chemo calls for the drugs Pat mentioned. During my chemo I ate incredibly well, yet my blood count plunged like yours. The Neupogen and Procrit corrected it very quickly and I was able to continue the chemo.

Please let us know what your doctor says to you when you ask him your specific questions. You shouldn't have to wonder about any of this--you deserve straight answers to your direct questions.

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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