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14 Replies
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Very well put!
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
[quote author=egtmcsq link=topic=1105.msg7910#msg7910 date=1189194272]
hi wendy hope your ok? just thought i,d let you know i got bloods back and they are normal nither raised or lowerd calcium levels,also had an xray ,i was told to phone everyday for results as the radiollogist marked them for urgent referral,whilst i still need to make an appointment i have been told that the xrays have come back fine and i dont need to worry,sorry if this post is a bit garbled but i,v been abit garbled myself since this started,still have some pain in the hip ,but its alot better than it was,back at work today just got to watch myself
regards ian
[/quote]Hey Ian,
I’m ok, thanks for asking. Have been busy lately, and the forum seemed to slow down a bit so I’ve been relatively quiet this past week or so, but still here!
Glad that your x-rays and blood work were fine. I take it that means your infections have cleared up?
Wendy
Dear Ian,
What a drag this sounds like, I’m sorry. A thought crossed my mind: why don’t you ask for some anti-anxiety meds to help you through the stress of waiting for tests and being in pain. I use valium everytime i have to get a test done or I can’t do it (I’m a big wimp).
Keep us posted and all the best to you- get better soon.
Wendy
[quote author=egtmcsq link=topic=1105.msg7590#msg7590 date=1187389366] i,v had a bit of a surprise today,after about 3 weeks of pelvic and groin pain i took myself along to my doctor expecting a lecture on the amount of training i,m doing in an atempt to get my full fitness back.to my supprise my doctor seemed concerned she talked to me about the possibilaty of a secondary cancer.i did,nt think that even was possable.
[/quote]Hi Ian,
I’m sorry about your worries. Which doctor is suspicious now, the uro? I would be surprised if it were because uros know that grade 1 blc metastasises in less than 3% of cases. Some studies say the risk is more like zero. But because nothing is 100%—there are no guarantees in cancer-land—and because mistakes do occur in grading and staging (pathology), it is better to be safe than sorry and check out unusual symptoms in a young and healthy man like yourself.
My sister Maureen/Mo who also has a Ta,G1 tumor (but it was a singular one) was also thoroughly scanned and tested after her first tumor and her recurrence just to be very sure. As a breast cancer patient I’ve had so many xrays and bone scans over the last 7 yrs I lost count, but the bone pain was a side effect from my treatments. Waiting for these tests to happen is horrible…but the chance of them showing anything even more horrible is so small, it’s worth it just to rule out cancer as the reason for any pains you may be having.
How long till you get the test done? What is the nature of the pain you have?
Thinking of you,
Wendy
Ian,
We’re behind you here. The next two weeks are probably going to be filled with apprehension. Hopefully, it will turn out to be a benign situation. It is very, very wise to keep on top of it.
Please keep us posted as to how things are going.
Your BC friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
It seems my earlier post was taken out of context and/or not truly relating to my point. I am a 7 year survivor and am glad to see there is so much more clarification in the various types, grades, history of bladder cancers than was available when I was first diagnosed. Seven years ago we were all clumped together in treatment and prognosis. There is now great distinction made in treatment depending on which of the 15 plus different types of bladder cancer and the grade of that bladder cancer. There was little distinction made 7 years ago. Now that there is an in-depth report on superficial non-invasive bladder cancer offered through the link to bladder cancer web cafe I am encouraging everyone in that catagory to take advantage of that and read it. Many unwarrented fears can often times be set aside. Rosie
[quote author=wsilberstein link=topic=1105.msg7381#msg7381 date=1186970440]
Better to be scared and filled with knowledge than to have our heads in the sand and be unprepared if we get the shock of our lives with a change in status.
[/quote]There’s a Chinese proverb that says “He who asks a question is stupid for five minutes. He who doesn’t ask is stupid for a lifetime.” In this case, how very true.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
[quote author=Rosie link=topic=1105.msg7368#msg7368 date=1186959607]
When I was first diagnosed I read posts that were consistently from those with invasive or those having a cystectomy. I thought that was going to be the general course of my journey.[/quote]Rosie,
I first joined this forum when I found it 6½ years after my cancer when I was looking for information on urethral strictures. I seriously began to wonder what I didn’t know about all the people who had recurrences, including some after long stretches cancer free. It is frightening, but I’m here to tell you that even with a high grade tumor and CIS I’ve never had a recurrence. I hope it stays that way. Even though the recurrence stories scared me, I found strength in how all the survivors of recurrences coped. Better to be scared and filled with knowledge than to have our heads in the sand and be unprepared if we get the shock of our lives with a change in status.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Wendy,
I am so glad you are clarifying that those with more advanced and invasive bladder cancers are more involved and posting in this forum. When I was first diagnosed I read posts that were consistently from those with invasive or those having a cystectomy. I thought that was going to be the general course of my journey. So little was posted on the various types and long term history on the various types and grades. Anyone who is new to this forum and clicks “the most recent posts” on some days only see posts from those with invasive or cystectomies. I like that you now have a link to the WEB CAFE that directs people immediately to the information they need for superficial that goes into detail and clarifies the differences and the newest treatments etc. I hope those new to the forum click that and read it first. Rosie
Hi,
16 bladder infections…since your diagnosis in April ’06? Wow…that sounds like a lot, but I’m not a doctor…if he says that’s normal, well, sheesh is all I can say.
If you are nervous about getting a flexible cysto while awake, you could ask for some valium or something like that. Lots of people do. And make sure they let the numbing get have enough time to work…that will make it easier. It’s the unknown that’s worse than anything, you might find cystos aren’t as horrible as you expect, although I have met one or two people that find it an awful experience but that’s a big minority, most handle it quite well. It’s over quickly…
Some doctors use propholactic antibiotics to prevent infection from a cysto but that is frowned upon where I live, in Holland, where antibiotics are being used very sparingly.
Grade 1 Ta tumors are the large majority of bladder cancer diagnoses, they tend to recur but progress very rarely. Most people with this dx don’t hang around forums and message boards for blc because the majority of folks online have the more risky diagnosis, and that just might scare off the people like you…and my sister. She also had Ta, G1, recurred the first year, but only 1 tumor at a time. She has been clear for about 7yrs, they stopped occurring but we know it can always come back when least expected. But now we know enough to be able to sleep easily knowing that the chance this cancer will kill her is very very slim.
I sincerely hope your path will be similar to hers and that you’re clear on the next follow up.
Keep us posted.
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