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  • Damsel in Distress In Need of Advice

    Posted by SavvyPRpro on July 19, 2008 at 12:53 am

    Help! I’m Shragae’s sister – a menopausal woman who — until January, was relatively healthy. My GYN found a lump which turned out to be large (lemon sized or larger) tumor at base of my bladder – under muscle wall. MRI, board-certified urologist led me to top doc who did TURBT and mistakenly said tumor was outside vs. inside bladder (cuz it wasn’t on top of muscle) and sent me to gyn. oncologist – who then laparoscopically went in and “VOILA” it was and is inside my bladder. His biopsy said benign, but… then I began for first time to have symptoms: pain, pressure,intense urgency and then passing blood in urine and bloody liver-like chunks of tissue. Unable to sleep as I’m up all night peeing. Was told to wait to see if “fibroid” shrank as I’m mid-menopausal. New MRI and symptoms led me back to top doc who scheduled another TURBT. Day I showed for procedure, he sent me home – saying I had infection. Insisted I see infectious disease pro/MD but none could see me. I was very upset, emotional and he called to say I had to not call or email his staff or he would insist I see another Dr…. He then put me on anti-bioticis and did another TURBT. While I was in recovery, top doc said he thought he could now remove transurethrally and would get me in right away due to infection, symptoms and serious blockage. He let me have catheter for two days — the only good nights’ sleep I’ve had in six months. He told me to follow up with his surgical nurse to get on his surgical calendar asap. I emailed her once then twice and called and left two voicemails. No one called me with biopsy results. One week after surgery, nurse emailed me and cut and pasted biopsy which I don’t understand. I “appears” to be benign despite all the cancerous symptoms. I appear to have major infection, inflammation. Duh! My urine is backing up and I have a blockage and have to strain all the time. Then, the scheduling lady (not a nurse) tells me the operating room I need is not available for more than a month from my TURBT – nearly a month from the call date. I freak out!!! :ohmy: I cannot endure that long. I begged for an earlier time and was assured I’d get a call by the next day. No call. I called and was told they were working on it. No email. No call. And now it’s the weekend. Meanwhile, I have nothing to help the pain and symptoms but the over the counter meds a stranger, nurse recommended tome in recovery. No real relief and I now pee ORANGE. My top doc thinks I’m a pain-in-the-ass. I am at the end of my rope. How can I get through to my top doc that I need him to step up and “make good” and help me –? Had he done right by me in January, I wouldn’t be in this mess. I know I don’t apparently have cancer, but I am suffering and feeling desperate.:S —– I forgot to mention that my doctor’s visit before the 2nd TURBT was a 2 hr. wait followed by a 1.25 hr wait for labwork and a 1 hr. wait for the pharmacy…. Is there no more concern or compassion for patients? When I’m with the top doc, he’s very nice, but when I’m not there — it’s Out of Sight, Out of Mind… :angry:

    Sam91403 replied 16 years, 6 months ago 7 Members · 33 Replies
  • 33 Replies
  • Sam91403's avatar

    Sam91403

    Member
    July 31, 2008 at 6:42 pm

    Good question, Patricia

    After many years of Cipro, my husband took one tablet of the time release Cipro and went into anaphlaytic (not sure of soelling) shock. He has been told to never take Cipro again.
    Sam

  • 's avatar

    Guest
    July 30, 2008 at 1:06 am

    What about her kidneys? Are they functioning now? Any damage? Also i’ve got to ask..if she’s allergic to Cipro IV why on earth could she take it orally?
    I’m just a pharmacist….was it just a reaction at the injection site?
    Pat

  • shragae's avatar

    shragae

    Member
    July 29, 2008 at 11:57 pm

    Right – same hospital same top doc.

    The doctor who assisted top doc told DS today that they did NOT remove the entire tumor but “not to worry” as they got most of it.

    Still don’t know for sure if it is benign or not, but they think it probably is benign. The path results aren’t back yet.

    Also the resident said that my sister couldn’t have lasted much longer as the bladder would have completely shut off her urine flow very soon — which we knew. Top doc said “no way” could she have lasted till 8/11.

    The fever is from DS being septic. All this infection was caused by the back flow of urine that couldn’t escape. Now it turns out she is allergic to the ciprio in the IV so they stopped the IVs and are giving it to her orally.

    Good news is that her fever broke this afternoon so with any luck she’ll come home tomorrow — very weak but feeling so much better.

  • 's avatar

    Guest
    July 29, 2008 at 6:10 pm

    same top hospital and same top doc.
    pat

  • 's avatar

    Guest
    July 29, 2008 at 6:03 pm

    Progress in the making, thats great she finally made it to a place that can hopefully help her. I am sure you are tired after the drive as you said, but feel relief that her care is in the hands of specialists . Which top hospital are you speaking of. ? Take care, keep us posted, Ginger

  • shragae's avatar

    shragae

    Member
    July 29, 2008 at 3:46 pm

    Yesterday my sister had a TURBT at the top hospital with top doc to remove her rare bladder tumor.

    I drove about 900 miles with my 85 year old father and 9 year old son to be here with and for her. The doctor thinks he removed all of the tumor and doesn’t yet know if it is a leimyoma or a blast. (Her pre-op paper work said as much and I also asked him directly). From the look of it he thinks it is probably benign. We’ll know for sure when the path results come back.

    She was supposed to come home today, but she is going to have to remain hospitalized at least for today. Unfortunately she ran a fever last night. She’s had an infection from this tumor for a few months and they want to make sure she is in better shape before they discharge her. The plan is to release her tomorrow, but it is really dependent on her condition.

    We have a joke in our family that if my sister were thrown into a mud hole she’d find a diamond in there. In that vein she was put into a hospital room with a roommate who proceeded to get violently ill. As a result the room wasn’t habitable for my sister so they moved her NOT to another room but to the biggest suite in the urology hospital.

    Leave it to my sister! She is now queen of one of the nation’s top hospitals!

    Meanwhile I’m very tired having driven 900 miles to get here on Friday and Saturday and then rising at 4:00 a.m. Monday to drive the one hour one way to the top hospital yesterday. I spent the day there until 3 p.m. when I drove the one hour back to her apartment.

    So I’m tied today, but beginning to feel like myself.

    Things like this make you really appreciate life. One of the women in the waiting room is married to a Russian. He is 37 and she just found out yesterday very bad news — he has bad cancer as a result of having lived in the Chernobyl area. I felt so bad for her. We just never know what life has in store for us, so enjoy every day.

    Thanks so much for your support. I’ll keep the board posted.

  • shragae's avatar

    shragae

    Member
    July 21, 2008 at 5:10 pm

    We don’t know that it IS a leimyoma — that was the path result from the Ob/Gyn but the Top Doc didn’t trust the result.

    There are NO uterine tumors. Everything in the uterus was fine — the tumor is definitely in the bladder.

    We do not know if the tumor is benign or cancer.

    We don’t know much of anything!

    The good news is that my sister has a friend who is the widow of a surgeon and a former OR nurse. She has offered to be my sister’s advocate so hopefully that will help us move forward.

    God willing it is leimyoma, but whatever it is the bladder is being destroyed by it (denuded). Hopefully we’ll know more soon. This has been going on for six months.

  • pemquid's avatar

    pemquid

    Member
    July 21, 2008 at 2:49 pm

    I was going to reply earlier, because someone I know had a uterine tumor that might have impinged on — and into– her bladder. It sounds as though this might have been the case for “damsel in distress,” though the type of tumor is not be the same. As I understand it, uterine fibroids are a type of leiomyoma, but there can also be primary leiomyoma tumors of the bladder itself (a rare type of bladder tumor), which seems to be the case here .

    Knowing that leimyomas are benign must be a relief. You’ve apparently known that this was a leimomyoma since getting the ob/gyn pathology report. I gather that a big concern is about the timing of the surgery, lack of communication, etc. But, at least if you have the name of what it is, you can do your own research and reassure yourselves that it’s not malignant, uncomfortable though the symptoms may be, and unhappy as you may be about not getting the surgery scheduled sooner.

    My acquaintance’s situation was somewhat different, but may be worth describing in case anyone else has something similar happen. She was some years post-menopausal, but had been having sporadic problems with pain, bleeding, etc. for several years, for which the gynecologist could not find an explanation. Scoping of the uterus and other testing didn’t reveal anything untoward. However, my acquaintance finally got the dr. to do at least exploratory surgery, and lo and behold, she had a large uterine cancer. It was fortunately a type that is called “indolent,” i.e. very slow growing and not likely to metastasize. Dr. took out what she could, but it was so close to the bladder that the dr. was concerned. So, they did internal radiation (rod inside for several days at a time) to shrink any remaining mass. Then, my acquaintance went to another city where there was a good gynecological oncologist, plus a urologist on call, and had surgery to “clean out” what remained. Urologist didn’t think the tumor had penetrated the bladder wall, but he was on-call for the surgery just in case. There was indeed no bladder penetration, and the remaining tissue just “peeled” nicely away. There’s no metastasis, no remaining tumor, and all is well.


    Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
  • 's avatar

    Guest
    July 21, 2008 at 2:10 am

    By golly Pat I think you got it!!!!SO THATS THE ANSWER, AND THATS WHY NO BLADDER REMOVAL..AMEN,,,,Pat you are the best at this research thing!!!
    So girls thats what you are dealing with, now its time to make up with the Doctor and get the best result!!!! hope it goes well,, let us know!!
    Ginger

  • 's avatar

    Guest
    July 20, 2008 at 9:42 pm

    ok..new word…leiomyoma…..check this out and some of the other links to the right of the page.
    http://www.ncbi.nlm.nih.gov/pubmed/2683666
    Pat

  • shragae's avatar

    shragae

    Member
    July 20, 2008 at 6:46 pm

    OK, from the beginning.

    My sister went for an annual OB/Gyn appointment and her doctor discovered a lump. She sent my sister for an MRI and it appeared the lump was a bladder tumor.

    Two urologists (one who did a cystocopy) said it was too complex for them. anuary 21 another MRI showed it to be a bladder wall submocosal tumor protruding into the bladder with central necrosis.

    They suggested she needed a top doctor at a top hospital. She was referred to said top doc who did a cystoscopic eval and he found no evidence of any submucosal lesion. (This is all from the Gyn path report). Top doc thought it was a suberosal uterin myoma.

    DS went back to an oncological GYN who did a laproscopic procedure. He found the uterus and ovaries were normal. Palpitation of the back side of the bladder found the mass which appears mobile. The gyn entered the bladder and made a cystotomy. When the bladder was open they could clearly see a large mass protruding into the cavity of the bladder. The mass appeared to be attached to the bladder immediately below the entrance of the urethra into the bladder.

    The OB/Gyn took a biopsy of this mass. the location of the mass is clearly submucosal and within the bladder. The Gyn terminated the surgery because resectioning the mass would entail ureteral stent placement to ensure no injury to the urethra. Gyn said she needed to go back to the urologist. . .

    The OB/Gyn biopsy says the mass isa urniary leiomyoma with focal degeneration and minute fragment of benign urothelial mucosa.

    Top urology doc wanted to perform his own biopsy which is why top doc performed a TURB on 7/30 — results of which have been discussed here.

  • momof4's avatar

    momof4

    Member
    July 20, 2008 at 4:57 pm

    SavvyPRpro,

    If your primary asks the hospital for copies of all of your records maybe he can make heads or tails of it…I think since you have a good relationship with him that could be a viable option for you…

    Cancerous Bladder tumors tend not to be very symetrical, if that is any consolation, not that there cannot be acceptions…some are mushroom shaped, others that look more like leisons than tumors, similar to placenta in the way they form along the bladder wall attach and can penetrate through it. Some look like coral or a cactus, and still others are noninvasive and flat, not penetrating the bladder at all.

    You seem to be having alot of problems with this office, it may be time to just change Dr.’s, however, it may just push your date further back than the scheduled time you have now…that is a decision you will have to make.

    I sincerely hope that it is nothing serious, and I want nothing more than to give you some peace, especially since it is the weekend…but tomorrow is Mon. and hopefully you will get the answers you need then.

    I wish you well,
    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.

  • savvyprpro's avatar

    savvyprpro

    Member
    July 20, 2008 at 4:20 pm

    Forgot to mention that my “tumor” is white, looks like a ping pong ball – and is symmetrical — as I saw a photo from my laparoscopic procedure. I believe and my GYN believes it’s a menopausal-related fibroid – rare in its location but common for my age, family history and my being in mid-menopuase…. I got the full report and that’s all there is… I signed a document that the hospital can talk to my siter, Shragae here. Clearly, patients who are involved in life-threatening dilemmas should take precedence, but then this is a very very large practice of top docs — so why not offer me the option of another surgeon to do the surgery if mine is too busy with his workload? Why not have someone call me to explain what my path means? If you “threaten” to “rule out cancer” in the docs I signed, then any patient would be on pins and needles waiting to hear the results — in ENGLISH, laymans terms. I called patient advocate’s office anonymously to ask “what is a reasonable time frame to get a path results to rule out cancer” and “how should results be disclosed” and other such questions to assess what is reasonable and such. All she did was say, “each doctor is different”… which led me to believe it’s merely a front to field complaints vs. actually advocate for patients. In the hospital’s “PLEDGE”, they tell us to ask questions and advise when pain is an issue but I now feel that I have done that and have been ignored. No one even reached out to me after my TURBT (tho they asked if they could in post op), to see how I was doing — or to offer advice, meds for my post op symptoms. I plan to talk with my primary physician, who is a sweetheart and knows me well. He’s very calm and may be willing to talk to my surgeon. I’ll keep you posted.

  • shragae's avatar

    shragae

    Member
    July 20, 2008 at 2:34 pm

    It sure does seem like something is “missing” from the path report — but I’ve seen the fax. There is only item #1 before the closing part of the report. In other words the gross description is the only one given.

    Why?

    I have no idea.

    Bottom line is someone needs to explain the report to us — perhaps we can request a phone appointment with the doctor and I can be on the call with my sister?? Just a thought. . .

  • 's avatar

    Guest
    July 20, 2008 at 2:06 pm

    Hi,

    Sorry to hear of the many distresses you are dealing with, but I noticed something as I read the entire thread….. On the post where you disclose the path report from the TURB – it seems to only be the gross description and that the microscopic findings are missing. Is it possible to either get another copy or ask it to be resent? Maybe there is a missing section that would clear up alot of this confusion. This is just a thought and I hope your situation improves, God Bless, Holly

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