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What exactly does this mean?
Hi Folks
Steve has just received letter clarifying situation regarding his latest cysto – 12 months after first diagnosis and Turbt. He has had 6 plus 3, plus 2 doses of BCG.
They quote ‘There were two velvety patches on posterior wall, near to the dome and congested areas on both lateral walls. Each have been biopsied with diathermy. Histology of three separate biopsies shows urothelial atypia only without any definite evidence of carcinoma in situ (pre-cancerous changes) or malignancy. Follow up cysto in 3 months and 3 further doses of BCG’.
I just wanted your view on this. Obviously, we are pleased but what is ‘atypia’?
Also, I worry constantly from what I read here about understaging etc, but his Urologist is the ‘top’ guy at his hospital and their path departments are supposed to be excellent so should we just hope for the best.
Thanks
Ceri
GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis12 Replies-
Hi Dan and Zach,
That Pennys catalog thing was way tooo funny!
I do not regret my RC either and I have become quite fond of my neo :) I do not regret having made sure I got what I needed when I did.
Holly -
[quote author=dmartin12358 link=topic=1434.msg10549#msg10549 date=1195411082]
It’s funny, there are so many things in life that I’d like a ‘do over’, a chance to do something again.
[/quote]Dan, the next time you’re feeling nostalgic about the good old days, you might enjoy seeing the fashions from this 1977 JCPenny catalog.
I don’t regret my RC either. Not for a second. I feel better and healthier now than I did a year ago, and my lack of my original bladder is so inconsequential in the big scheme of things.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John SteinTim…”thinking space”…..great term. So many of us don’t have that time and its extremely difficult to line up your few remaining brain cells to actually assimilate and process the information of “invasive” and “cystectomy” and WHAT..lose my bladder….? Research done quickly…..Research very scary….making good decisions so paramount at this point. Why i advocate so strongly the second opinion from a major cancer center and finding that surgeon who can do this surgery blindfolded…well you know what i mean!!
Pat
Yes, very similar situations, Tim, except you had those G2 and CIS recurrences – I had none, fortunately, which I partly attribute (kinda) to a 2nd TURBT shortly after my first one (the docs thought it was recurrent blc – but it wasn’t). Who knows.
My RC was one year after my initial blc diagnosis, and while on the one hand I wish I had had a cystectomy sooner, on the other hand I’m glad I had a dozen BCG treatments, even though the side effects were horrible on the last few (I did like the idea of my immune system being enhanced by BCG).
My sense is that for every cautious doc advocating aggresive treatment (RC), there are 50 docs on the other side. Why? Because there are relatively few urologic surgeons who do RC, most are only qualified to do TURBTs, prescribe BCG… It’s like that old adage, if one’s tool is a hammer, then every problem presents itself as a nail.
I also have absolutely no regrets about my RC. It’s funny, there are so many things in life that I’d like a ‘do over’, a chance to do something again. But not this. The thought of cancer returning somewhere in my urinary tract is still there, but the thought is quite remote. My peace of mind is an order of magnitiude greater than before my RC, when I was worrying about recurrence and progression, was my blc understaged, would I need chemo, why didn’t my first urologic surgeon use mitomycin C after my TURBTs… I was driving myself crazy.
I guess I believe that if one uses statistics and long-term outcomes of patient survival as a primary (though not the only) criteria to judge the ‘rightness’ or ‘wrongness’ of a decision to go the bladder-sparing or cystectomy route, then there is a right decision for those with T1G3 + CIS – and the right decision is cystectomy. But there are clearly other criteria to base this decision on, so as we all know, what is right for one of us is not necessarily right for someone else.
I’m yakking too much, time to make some coffee…
Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)
I think we were in a similar situation Dan. The G3 + CIS combo is an incredibly hard situation to call. It’s damned if you do and damned if you don’t. And for every very cautious doc you can find one that backs the conservative approach. it’s very confusing. Ultimately I decided on a bladder sparing regimen but, after everything I’d read, gave myself a fairly strict limit – not as strict as your docs actually. I think I had a G2 recurrence, very small and the thing that swayed me towards the radical route was a teeny bit of CIS 3 months later. I was also lucky, like you by the sounds of it, to have a very frank medical team. But I don’t regret taking the initial sparing route at all. I just wasn’t ready for the surgery the year before. It’s freaky situation anyway but I was much more prepared after some thinking space. I’ve never looked back and I feel my life is a lot better now. But you’re absoloutely right about there being no right or wrong decisions. Just decisions you feel comfortable with.
tim
[quote author=The Rabbit link=topic=1434.msg10444#msg10444 date=1195249233]
Also, I worry constantly from what I read here about understaging etc, but his Urologist is the ‘top’ guy at his hospital and their path departments are supposed to be excellent so should we just hope for the best.
[/quote]
Hi Ceri,
Understaging does not result from lack of skill of the doctor or pathologist, it is not a misdiagnosis. Here is a quote from USC/Norris (and Dr. Stein is their top guy):“Despite the best clinical efforts, even with advanced histopathologic evaluations and imaging techniques (CT, MRI), significant clinical staging errors occur. Errors ranging from 34% to 62% have been reported in several large studies.”
BCG (maintenance therapy) does reduce (not prevent) recurrence and progression rates, so I would suggest that your husband’s bladder-sparing approach include:
– continuing BCG maintenance
– use FISH in addition to cytology
– find an institution that does UV light cystoscopy as it detects cancer better than visible light cystoscopyThe reason I post this stuff is not to worry you or your husband or to say that his approach is not right (there is no right decision), it’s just that your husband’s diagnosis of T1G3 + CIS is a dangerous combination (one that I had). When I asked Dr. Stein what he would do if he had the same cancer as me, he said that he would undergo cystectmy before a recurrence. His recommendation (which is supported by several other papers that I had read) for patients with high grade cancer is as follows:
“It is my recommendation that patients that radical cystectomy be considered for patients with… T1 tumors associated with CIS…”. One other thing to consider is the number of lymph nodes removed, especially important is one has muscle-invasive blc (which your husband’s tests indicate that he does NOT have).
It can be a difficult decision what to do for T1G3 and CIS patients, especially when tests show no evidence of disease (I don’t use the phrase ‘all clear’ as that is misleading). Dr. Stein’s recommendation is not the ‘right’ choice, but another alternative.
Good luck!!!
Dan
Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)
Also, I worry constantly from what I read here about understaging etc, but his Urologist is the ‘top’ guy at his hospital and their path departments are supposed to be excellent so should we just hope for the best.
Second opinions can never hurt but it seems according to Ceri and Steve it appears they are both satisfied with their Dr. and it is not the first time they saw him from what I read. So since there is no cancer at this point I think their Dr. is making the correct diagnosis.
Histology of three separate biopsies shows urothelial atypia only without any definite evidence of carcinoma in situ (pre-cancerous changes) or malignancy.
If it were me I be quite satisfied with a cysto follow up in 3 months. So good luck with your follow up. Joe
Ceri
First: Atypia Cells DO NOT necessarily mean they are “Pre-Cancerous” but they do show that the area of the biopsy is at risk of developing cancer. Otherwise they
are called “Pre-Canerous Cells” or Lesions. This is I am sure why your husband is continually getting checked, and having follow-up cytos. Because they feel he is at risk of developing carcinoma in sitsu.Definition:
Atypia–is a term used to describe cells that have lost their normal appearance by have not reached the abnormality of cancer cells.
Second: Second opinions are always good. It can not hurt to get one. If your next appointment with this Dr. is in 3 months, that is a long time to wait without knowing for sure that the test were correct, and that they were also interpreted correctly.
I think that if after the second opinion with the same conclusion, then you basically got the all clear for alittle while. You will still have to have the follow-ups to keep it at bay. The reason you are under care is because he is at an increase risk right? Well the “Atypia” cells are just proving that. You said that the last 3 biopsies showed the same thing.
Possitive Thoughts For 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.
Ceri
Steve’s diagnosis and age are pretty similar to mine and I’d also want clarification in his situation – and letters sent in plain english! I went down the BCG route and eventually went for a cystectomy when my tumours recurred. I think I went for it earlier than I should have done but am really very happy with the result. Im in Bristol. If steve ever wants to sound out any decisions with anyone Id be happy to pass on my details if ever you guys PM me.
all the best
tim
Ceri,
From what you describe about your Urologist and Pathologist I think you can hope for the best here.
Also, it sounds like Steve has already been around the block with this disease.
Just curious, how long since Steves’ initial diagnosis?
Very best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Atypia is a term that pathologists use to describe cells that appear to be in the process of turning cancerous.
You might ask them to futher elucidate on that.
Pat
“Atypia” just means that the cells look different from “Normal” cells, but only slightly.
A second opinion can never hurt. If you asked the Dr. himself, “Would you get a second opinion if this was you”?, the answer would be yes…
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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