well MD Anderson just called. She said nodes were clear...however because it was a high grade cancer it does come back often and Bob may need more treatment (chemo) I asked her if it came back would the chemo work...She paused and said it is our hope. She strongly suggested we go back in 3 months for follow up. Bob refueses to go back. He wants every test done here. He won't change his mind. So at first Kamat said if nodes are clear, break out the champane, now they are saying he needs very close follow up and it isn 't as good as we expected. I am very confused. Calling local doctor and seeing what we need to do. I just didn't get any optimisim in her voice. She was really pushing to get us back there. But we will not go, Bob is in charge. I can't really figure out if this is good or bad news. Joycee
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path report
- By joybob
- Posted October 16, 2009 at 11:39 am · 45 replies
- In Living with invasive bladder cancer
- Shared with the public
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45 replies
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- By DRB
- Posted October 16, 2009 at 12:02 pm
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I am confused too. I was hoping when the bladder came out and the cancer was only contained in that area (and lymph nodes are clear) that should be great news....am I wrong? I know they will want to check Bob every 3 months (that is what they told us too). I am going to talk to Dr. Grossman more next week.....thanks Joycee for keeping us informed.
Stacey
- By Cheyenne
- Posted October 16, 2009 at 12:04 pm
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Joycee, get a good uro where you are, one that understand oncology. Have him or her send for the path report. I don;t like you have been treated and if I were Bob I would not go back either. But I would also make sure they know that, in writing, certified mail, return receipt. This is very disappointing. However, if the nodes are clear, I would break out the champagne. Getting regular check ups to be sure there is no mets is always recommended though and that is pretty much standard procedure. I see no reason why bob cannot do that at home. If the nodes are clear, go celebrate. The nodes are usually the first place it would go. It's like any other kind of cancer, regular checks are needed to be sure there is nothing going on. Have some tequila. I consider that good news. But the surgeon really should have been the one to call you. The tequila is on the way!
- By DRB
- Posted October 16, 2009 at 12:11 pm
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I agree with Cheyenne.....break out the champagne.....and you know what....we will break some out here in Houston tonight just for Bob.....
I would just do regular check ups in your hometown and take if from there.....
Good luck.
Stacey
- By cat22
- Posted October 16, 2009 at 12:25 pm
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Joycee, yes do break out the champagne. We will toast all of you (Stacey, Dave, Joycee and Bob) with a glass of Merlot. I know Cheyenne, it's tequila for you!
I agree, nodes clear - celebrate, and then get on with finding a good doctor in your area.
Hugs
Cathy
- By joybob
- Posted October 16, 2009 at 12:56 pm
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thank you each and every one. JJ just called me too. I can't believe how that girl talked to me, like a computer. I kept saying isn 't that good news, she kept repeating yes BUT. We will do everything here and if something crops up get another opinion someplace else. I feel Kamat should have called. I am greatly disappointed. he said everything was great he could cure bob and now I hear BUT. don't you hate that word. I will keep everyone updated. thanks hugs, Joycee
- By jmch
- Posted October 16, 2009 at 1:20 pm
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Congratulations, enjoy the good news and, as everyone says, stay diligent (but not paranoid). Balance between too much attention (stress, bad) and too little (oblivious, bad). I'll pop bubbles for you too!
Jackie
- By joybob
- Posted October 16, 2009 at 1:34 pm
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You my friend are more positive then the nurse that called me. that is why I don't know to laugh or cry. Origin ally Kamat said that if nodes clear its great news, now I hear well this comes back in high per centage of cases in lung and liver. we dewcided to do follow up in Orlando. the trips were wearing bob down. And if problems arise we will get a second opinion. So I was stressed for 5 weeks, they could have called sooner, shame on them . joycee
- By lsh
- Posted October 16, 2009 at 1:48 pm
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Joycee,
I think that the news that the lymph nodes are clear is something to celebrate. I think it is normal to be followed up every three months at first and then every six months and finally every year.(At least that is what I have always heard.) I would still call patient advocacy so this does not happen to someone else. What about calling Kamat's pa?
Lynda
- By joybob
- Posted October 16, 2009 at 1:56 pm
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thats who calle me Lynda. She was cold as ice. She did not make it sound like good news, that is why I was upset. I kept saying no nodes thats good. she kept saying BUT it comes back in half cases. so cautiously optimistic at this point. I wish Kamat made the call and explained everything, she did not. just pushing for us to come back. and with this treatment bob said no way. I still would have done the same thing and got him as surgeon. I just would have liked more commuication . Joycee
- By balihigh
- Posted October 16, 2009 at 2:01 pm
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Joycee,
It is great that the lymph nodes are clear but she seems to be hiding something. I would want a copy of the path report and a better explanation. Can you talk with the doctor over the phone?? I am not sure that I would wait 3 months. I would be making calls to find me a urologist that is near and one that is very experienced with bladder cancer.
Hugs,
Nancy
- By lsh
- Posted October 16, 2009 at 2:01 pm
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Joycee,
The next step is to call the pa. He/she should be able to explain the results. They usually call you back late in the day. Tell them that you are REALLY upset as you understood that clear nodes would be good pathology and she made it sound like it's not. Sorry you are being "man handled" by the system!
L
- By joybob
- Posted October 16, 2009 at 2:06 pm
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maybe I am reading too much in her words, but she just kept repeating the but thing its good but this its good but that. I wanted kamat to call and he did not. the pa is the next best thing, and she is it. I will get report and send to my cousin who is cfo of the biggest oncology place in syracuse. and check out doctors in orlando too. I really thought clear nodes was the gold standard BUT
- By joybob
- Posted October 16, 2009 at 2:08 pm
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lynda it is what it is I can't change things. I am exhausted worrying about this. When we get the results we go from there. I was told in Orlando by oncologist taking the bladder out gave us 90% success rate, but 3 different doctors all had different takes on it. our uroligist was the worse telling bob the 14 month thing, dang it! wheres cheyenne and the tequlia!!!
- By roadrunner
- Posted October 16, 2009 at 3:07 pm
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Joycee,
Lymph nodes are clear,no involvement,,,,don't read into what she says,,,take it for what it is now....
she didn't say he needs chemo,,,she wants him to come back there as thats where his surgeon is,,,,
Personally I would go back there,,,I would want to be where the surgery was done,,,with the surgeon,,,you have the option being you can travel.......
CELEBRATE......he is clear,,,,,chemo is not being suggested,,,,not in the plan,,,,
plan a litle trip to go back,
as getting the all clear again
in 3 months,,,
will call for another celebration,,
Ginger
- By joybob
- Posted October 16, 2009 at 3:55 pm
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bob won't go back and you can't change his mind. She told me if in 3 months it showed something chemo then. But we will wait and see. five weeks of waiting for a 2 minute conversation and she was very vague and not pricise on anything. but yhou are right nodes clear...that is good! Joycee
- By Keith1
- Posted October 16, 2009 at 4:17 pm
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Joycee,
I'm with the others on this. Celebrate now and get checked by a new uro experienced in BC at the 3 month mark. But find one and make the appointment now. I wish you both all the best.
Keith
- By joybob
- Posted October 16, 2009 at 4:27 pm
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we are planning on doing that. we went from the first uro oncologist saying 90% curable to this horrible wait and a cold as ice pa telling us the BUT thin g, clear But this Clear but that. Heavens, it drives you crazy. joycee
- By Keith1
- Posted October 16, 2009 at 4:40 pm
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Do you think they might be saying "but it has a high rate of recurrence and needs to be checked in 3 months"? And not wording it like that.
- By joybob
- Posted October 16, 2009 at 4:58 pm
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every time I say the nodes are clear that is good, she said BUT it comes back and he must be dilligent every 3 months and may need chemo. she is saying that without waiting the 3 months. and she did not explain anything, I feel the doctor should have called. thats how we both feel. so b ob said to go back and be a number again, it ain't happening. no complaints about surgery, he is a great doctor, but this girl gave very little information and it was like reading a script, and she wasn't talking to a human on the phone. Kamat told me if no node involvement no chemo and break out the champane, this girl wasn't so positive. I give up..cheyenne said tequlia I say drinks are on me!!!!!!!!!!!!
- By HighlandGuy
- Posted October 16, 2009 at 5:00 pm
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Joycee,
It sounds to me like you are making a mountain out of a molehill.
The information she gave you is the best that is possible. Bob is NED. At this time, he has no cancer problem!
What was the nurse saying? What any responsible medical person would say: with cancer there is never a guarantee that it isn't going to come back! Once you have cancer, there is ALWAYS, a high risk of it returning, or having a new cancer!
I had highly aggressived prostate, bladder (anaplastic) and lung cancer nine years ago. I have been NED (no sign of cancer for the past 9 years). Last Monday. my annual scans revealed tumors in both lungs for the first time in nine years. While they are too small to biopsy at this point, my Oncologists believe the are, in all likelihood a return of or new primary lung cancers.
The nurse advocated that Bob return to Anderson. That too makes sences. They know his case, but more important, there are so few doctors in this country that have any knowledge, not to speak of the in-depth knowledge of bladder cancer to properly treat it.
You have got Moffitt in Tampa that is, like M D Andersen a recognized, comprehensive cancer treatment center. If Bob doesn't want to travel to Houston, he may want to consider Moffitt in Tampa, but I would never consider having a followup by any other facility in your part of the country.
What is important is (1) anyone who has had a major cancer better have followup tests at regular intervals, because there is always the rist of a cancer return or new cancer, and, (2) most doctors are utter quacks when it comes to treating cancers. Would you go to a bicycle shop to have your Lexus repaired? He needs to be treated at a Comprehensive Cancer Treatment center where there are experts in caring for cancer!
HighlandGuy
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