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Squamous Cell Carcinema
I went for a regular check up with my doctor in May 07. I had been having back pain that I thought was from a fall several years ago.It had gotten better and I almost didn’t tell my Dr. She said lets do a urine test just to check.Test showed blood. She game me medicine saying it could be an infection. 2 weeks later I saw blood, a lot of blood. She said it could be stones or cancer.I had kidney stones years ago.She made the appointment with the urology Dr. he had the cat scan done. he said I had stones in both kidneys but my bladder wall was thicker than it should be.He did the cystoscopy 2 weeks later. He told me I had cancer. It was small about the size of a dime but it was flat. It had been caught early and he told me about the surgery to get it out and the treatments afterward. The cancer was removed Aug 9 07,but I didn’t get any treatment. Then he went on vacation. Two weeks later he told me I had Squamous Cell Carcinoma and it didn’t look good. He needed to do more biopys. That was done, then I was told this kind of cancer does not respond to chemo or radation and my bladder must be removed the cell were in the muscle.My sister found the Cancer Center of America in PA.We contacted them I spent 3 days there meeting the staff and doing more test. They were really nice. I met the doctor that would do the RC. I was told the kidney stones were blocking my right kidney and the left had a small blockage. Altho both were still working the right one not so good, the kidney stones would have to be removed and a stent put into the right kidney.That operation done one day and the RC the next day. I went home waiting for them to call me to set the date. Finally I called them,the doctor was on vacation. A fews days later his assistant called me and said the surgery would be done the 30th of October 07.When I aske him about the stones and that operation he said there was no mention of that in my records. i told him of the tests I had at the center , they did not not know of those tests either. He said he would contact the center to get those records. So far I haven’t heard anything and We really haven’t talked much about the bag or whatever we descide. He did say before the operation I would come back and they would go through everything with me and I would meet someone that has had this done. he said the operation will take 10 hours, and they are going to take out everything,bladder,female organs,and more. That was a shock I thought it would only be the bladder. The only options I remember them saying any thing about was the bag or making a bag but still having the piece coming to the outside. I have searched the internet but cannot find anything on this type of cancer. The Doctors seem to think it is contained in the bladder. If not there is nothing that can be done.
I had no idea that he operation would take so long. I have a hital hernia that is blocking some of my breathing pathway. So I worry about this and how long does it take for the kidneys to become completely blocked. One doctor said the blockage was stones another said cysts. If anyone knows anything about this type of cancer please let me know. No one in my family has ever had cancer before. We usually have heart attack ???s. -
15 Replies
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Lucky, Iam so sorry to hear that your cancer has spread, maybe you could start a new thread asking about the chemo, then hopefully you may get some people that have experianced it, answer your questions.
Keeping you in my thoughts & prayers,
Cathy -
Hi all, yes I am thinking about the chemo. I didn’t know they had different kinds. he did say the first time would take 8 hours.I find out about something and then things change andI have to start searching again. The doctors in Chapel Hill does not think it is squamous cell and that a mistake had been made there.That it is the regular kind. I guess it doesn’t matter both can be deadly. He did tell me the chemo might shrink the cancer and I could try it a couple of times to see if it would. I know a lot of you have had chemo and I would appreciate an info pro and con on it. I have my family with me 100 per cent and 1 of my sisters is with me constantly and will be moving in with me so I can bring my mom back home. I worry about my brother constantly as he is in very bad health and lost a daughter 2 years ago due to a kidney disease. When my mom or another sister told him I was so sick and having kidney problems he freaked and was in the hospital for more than a week with a drip to keep him from having a heart attack. I only missed 1 day going to see him. We are also very close. My husband and children are taking this very hard. Please keep us in your prayers. I think I am still in shock.
Lucky -
Hi Lucky,
Well, that must have been a huge shock, those CT results. I’m sorry to hear this. I wondered which drugs your doctor had in mind. Some are worse than others, there are a number of different drugs for metastasized blc, we have a special section on the forum with folks on chemo for stage IV. Maybe you could post a follow up.I hope you have family around to help you through the coming period, and friends too.
I’m wishing you all the best on the next phase of your journey.
Wendy -
Lucky,
I just want you to know that I was a patient of Dr. Pruthi’s at UNC, and I just feel in my heart that you could not be in better hands.
Please keep us posted on how you are doing. Are you thinking about doing the chemo?
Your BC friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi I saw Dr.Pruthi at Chapel Hill and a Dr. Kim. They were very nice and I like them. He insisted on getting the cat scan done with the contrast and dye which I am allergic. But they did it anyway. I had a light reaction and they took care of it. However it must have lit me up like a Christmas tree because the cancer is in my bladder, kidneys, liver, lymph nodes and bones.
They said there is no need to take my bladder out. The cancer center had put in their reports that they thought it had spread. They were going to take my bladder out anyway and I might have never gotten over it. That really upsets me. The team at Chapel Hill has offered me chemo. They said it may shrink the cancer or it may not. I don’t know a lot about chemo except you get very sick and loose your hair. I could use any thoughts, knowledge and advise, pros and cons. They also said that the cancer may not be squamous cell but the normal in the liver.
thanks Lucky3579Lucky,
We have had two cases in North Carolina now and the doctors in both cases go on vacation leaving you hanging. Not acceptable when your dealing with bladder cancer. Time is valuable. I agree with those who give you good advice, find a major facility with urologists who are very specialized in this surgery. Get your situation with the stage of the cancer finalized, generally surgery should be 3 months from diagnosis, at least at the Cleveland Clinic’s advise to us. We are here to help , as I was blessed to be guided by the members of this forum through my husbands r/c . Your in the right place for help!!
Lucky,
My husband goes to Forsyth Cancer Center and so far we are satisfied with his oncologist and radiologist. We were not as happy with the urologist.
Bob has had chemo and radiation but is off for two months now. The only surgery he had was the cystoscopy. He is Stage IV which has metasized to several places.Sounds like Karen’s husband is being treated good at Baptist and his dr.’s credentials look good.
My daughter’s in-laws are both being treated at Duke now and so far she and her husband are pleased. The Father-in-Law just had surgery on his pancreas and will have chemo and radiation. The Mother-in-Law previously had lung cancer and then an unknown mass in her sternum, was supposed to be having more radiation but put it off probably because of her husband getting sick. Her cancer has gone to the brain and she is having radiation treatments at Duke now.
They live in Virginia but chose Duke Hospital.
Both are living in an assisted living place near the hospital at this time until they can be go back home.I have always heard some bad stories about Duke but also some good stories. We had been encouraged by a friend to take Bob to Duke but so far we have stayed with Forsyth. We can be at home and commute to Forsyth and we do not have any complaints.
Wishing you the best.
Clara
Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007Lucky…thankfully you were an excellent advocate for your husband. Unfortunately in any hospital setting no matter how high up in the ladder they are mistakes are made and you need an advocate thats up on everything thats supposed to be happening. Duke Univ. Med Center ranks somewhere up in the top in Urology but if they won’t let you have an advocate to spend the night you have plenty of other excellent choices. Dr. Pruthi is one that Rosemary mentioned at UNC.
It seems to me your initial TURB might not have been complete…I would definately seek a second or third opinion and a re-TURB. I had a similar incident happen to me where i live. My first uro did not get enough of the tissue and left the margins..not a good thing. Within 9 days i was scheduled for a second TURB at Memorial Sloan and one of the best got the residual margins and a better speciman. It gave me time to decide on the diversion i wanted as i was at that point cancer free but the nature of a T2 Grade 2 tumor is that it will be back.
There are excellent surgeons in N.C. ..REALLY….and you don’t need to put more stress in your life because of overzealous interns. I didn’t have a choice but to travel as there is noone in my city who does anything but an ileal conduit and we’re not known for our urologists either.
Did you get my email by the way? Pat
Well Lucky teaching hospitals are some of the best in the country see that’s why they have doors to come in or go out. One bad experience and I sympathize with yours if the residents were doing this on their own without permission which I doubt. But whatever you have to get over that it is in the pass and now you have cancer so you have to go to some hospital hopefully a good one and one you like.
Now I had a left blocked kidney and that was from the cancer growing in the ureter which they discovered during the TUR. Now I don’t understand if you got both the Cysto and TUR done and they are not sure if you got stones or cysts they should know this by now seems to me. They put a double-j stent in my ureter and this opened up my ureter and got my left kidney functioning again.
I had a T2 G3 invassive tumor about 3 inches. I had all my work done at the Univ of Penn. The Tur, the pre-op chemo, and my surgery and after a long 6 months I did what I was told ,stayed focused as positive as I could and thanks to my team at Penn as of today I am cancer free.
Rosemary and momof4 have mentioned some great hospitals down there you definitely need a second opinion Lucky and I personally don’t recommend the Cancer Ctrs of America. And the other thing there is no getting part of your bladder out you either do it or you don’t and since you have cancer in the muscle wall your bladder needs to come out. Alot of folks try to save their bladders and in the long run end up doing more damage because now they end up letting the cancer spread instead of just facing the facts when they had their chance.
I mentioned the Cancer Ctrs of America I spoke with them a younger guy after I was already set up at Penn but just wanted to hear what they had to say. This guy is telling me what a bad hospital that Penn was and yet it is one of the best hospitals around in this area and also the country. This is cancer and they may be ok but you don’t tell me about a hospital that has an excellent record that they are no good just to get business I wanted the best treatment I could get and to me I found it. I’ll just throw in my links at Penn.http://pennhealth.com/WagForm/MainPage.aspx?config=provider&P=PP&ID=1852
Uro/Oncologist
http://pennhealth.com/Wagform/MainPage.aspx?config=provider&P=PP&ID=1398
Surgeon
Lucky all I can say now is you need to choose a hospital down there that you are satisfied with and speak with a good Uro/Oncologist or Surgeon and see what they have to say. Right now you are wasting time and at this point that is something you don’t wanna do waste time.
The Dr’s help heal us but we also heal ourselves and that is choosing a good hospital and next in line choosing a good team of Dr’s to care for you. Lucky we all got but one life so you want to choose the best Dr’s to take care of you. I wish you the best and once you have chosen your hospital everything will be fine, Joe
Hi Lucky,
I don’t know where you are in NC, but my husband goes to Wake Forest, and there seem to be many fantastic reknowned doctors there, and someone else on the board goes to Forsyth also here in Winston-Salem.
Good Luck to 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.
Lucky,
I had a second opinion and biopsy for superficial BC at UNC Medical Center and was very happy with my treatment there.
Dr. Raj Pruthi has a very good reputation for Urological surgery and is very thorough in talking things over with you. His surgery takes about 4 and one half hours according to what I have read on the Internet.
My co-worker has a choir partner, a lady about 15 years older than you, who had her surgery with Dr. Pruthi (almost 2 years ago) and she has been very happy with her new bladder.
Let me know if you want more information, or if I can help. I live here in NC also.
Your BC bud,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
[quote author=Lucky3579 link=topic=1217.msg8452#msg8452 date=1191227519] My doctor was hoping that part of my bladder could be saved. That is when he went on vacation and I had to wait 2 weeks to find out results. he didn’t tell me the stage <<>>>I am more worried about my kidney right now and what kind of replacement to use in place of the bladder and what else can be messed up by the surgery.We have the Duke>>
[/quote]I would not advocate a partial cystectomy for your case, there is too much risk of recurrence. But do seek out the best uro-onc you can find. I understand how you feel about going back to a place you’ve had a bad experience with. I hope you find the right doctor and institution quickly.
Wendy
hi Joe, I guess I was trying to say too much too fast. Yes this is when the turb was done. I was in day surgery. That was done here in North Carolina. My urologist didn’t get enough muscle tissue.The patholigest report was squamous cell carinoma but she needed more to tell if it was in the muscle. I went back to day surgery and he did a map biospy to see if cancer was in one place or all over the bladder. My doctor was hoping that part of my bladder could be saved. That is when he went on vacation and I had to wait 2 weeks to find out results. he didn’t tell me the stage just that a nest of the cells were in my muscle and some were changing to the squamous tendency and I had to have the bladder removed. he doesn’t do the RC and was about to tell me who would when I told him I was going to the Cancer Center of America in PA. he said he was glad and that he would do my follow-up. After reading some on this forum I may have made a mistake. My cancer is suppose to be slow growing and right now I only have the cells. My doctor here removed the cancer but the cells couldn’t be seen with the naked eye. So I guess I have a little time. I am more worried about my kidney right now and what kind of replacement to use in place of the bladder and what else can be messed up by the surgery.We have the Duke
hospital close to me about 1 1/2 hours but I had a bad experience with them once and I don’t trust them.My husband was badly burnt, he had skin taken from his leg and drafted onto his hand. his doctor said the cast had to stay on for 10 days with no air getting to the graft before they would know if the graft took or not. He went on vacation.(this seems to happen a lot)I was not allowed to stay with him. 2 days after his surgery some students were taking him from his room when I arrived. When I asked them what they were doing they said they were going to remove the cast to see if the graft was taking. I had to threaten to sue and everything. they didn’t do it but would have if I had not gotten there when I did. They won’t let family stay with you and I don’t like teaching hospitals anymore.
Lucky I don’t see any mention of this test (TURBT) Transurethral Resection of Bladder Cancer. You said in your post you had the cysto done and this lets the Uro know whether you have cancer and they can see the size of it etc. But in order to find out what is really going on you need to get the TURBT done. I read your entire post but I am not saying anymore till I know if you had the TURBT done or not and where you got it done. The beginning of your post is very confusing so for me you need to be more specific.
The cancer was removed Aug 9 07,but I didn’t get any treatment. Then he went on vacation. Two weeks later he told me I had Squamous Cell Carcinoma and it didn’t look good.
Would this mean this was your TURBT? Joe
Hi and welcome,
You and your sister found out something valuable right away, to keep good track of things like your records. It’s scary to think the surgeon had no idea of the stone problems…
If you can, it would help to get all your records copied and scan reports and have your scans sent to the new doctor.
Try not to panic too much because surgery can cure squamous cell bladder cancer, as it does other types as well. the most important factor is how aggressive the tumor is/was and whether there is any spread to lymph nodes seen after the surgery,’grade and stage’ (more info http://blcwebcafe.org/staging.asp
Cystectomy can take up to ten hours but is a very survivable surgery. It’s no walk in the park, that’s for sure though. Experience is very important so ask the surgeon how many procedures he’s done..there are a few types of diversions: the external pouch, the ‘internal’ or Indiana-type pouch and the neobladder. These are discussed on the main site here:
http://blcwebcafe.org/cystectomy.asp
Sometimes people can choose their preferred type, but it’s often up to either the dr’s expertise or the location of the tumor and that decides what type of diversion you will get.If you aren’t thrilled with your current doctor, you could try another opinion or switching doctors. If you’re close to UPenn, some of the best are there. When the diagnosis is cancer, and especially a rare one, it’s good to get uro-oncologists involved. There’s a difference between a uro, an oncologist and a uro-oncologist. And it’s not bad to be at a cancer center where the latest and greatest diagnostics are available.
We have a bit about squamous cell blc on the ‘rare tumor’ page:
http://blcwebcafe.org/raretypes.aspThere are women on this forum who have had all 3 types of bladder removal surgeries. Feel free to ask whatever it is you are wondering.
By the way, you may or may not qualify for reproductive organ-sparing cystectomy; it depends on tumor location, but it’s becoming more and more common for (esp. younger) women to get this newer procedure which spares early menopause, if you are pre-menopausal. Another reason an experienced uro-surgeon is a good thing to have.
Wishing you well,
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