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Starting chemo tomorrow
I just got back from the oncologist yesterday and tomorrow my husband starts chemo.
I came on the forum about 3 months ago and started writing in the newly diagnosed, from there I went to various discussions, non-invasive cancer, invasive, neo-bladder and now am in the metastic bladder cancer.
I can’t believe that in less than 3 months so much has happened.
His biopsy showed stage 4 Tis N2 and Mx.
The doctor said it was quite rare for Tis cancer to spread so fast but it was aggressive, (Grade 3). His CS showed no Metastis to vital organs only 1cm tumors or cells (didn’t understand that part) in nymph nodes around his pelvis.
All I can do know is hope, it is in Gods hands.
I don’t know if the internet is so great at the moment as all the info I have read is preparing me for the worst.
Is there anyone here that has survived this type of cancer? The chemo will be done in hospital, not an injection, a drip I think it is called. How will he feel, are the side effects really bad? -
15 Replies
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My husband was also diagnosed with stage 4 bladder cancer, July of this year. He is currently being treated with MVAC. How is your husband doing?
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Mike the “cancer free” zone was some of the best advice ever. We used it often when we were in the frenzy stage of his b**tard cancer BC. It was a Godsend! Thank you, good cyber friend for that as well as the “time out” it helps as this BC can consume you!
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Hi, Dana, I am so sorry I hadn’t been on the forum since we were out of town and then have had work done on our home.
Keep in mind that the diagnosis of Stage IV any cancer is terrifying I almost got sick to my stomach when the doctor told me that Jim’s bc had gone into his lymph nodes…3 out of 20. His surgeon had dissected from the groin up to the aortic bifurcation which is pretty standard. But, here we are 1 YEAR LATER and Jim has gone through his chemo that lasted for 6 months, post RC/IC, and 2 clear CTs to date. TOday Jim went for his 3rd post op CT and we pray all is clear. I will post what’s going on after we go back to the oncologist Weds. afternoon.
The chemo is doable, Jim went a couple days a week one after another and then the next week one day. Then a week off followed by the same 2 days etc. He had ups and downs, he still is tired some days more than others but he is ALIVE!!! So, yes, people who are diagnosed Stage IV do survive and live happily. Jim is one of the most positive minded people I’ve ever known. He refuses to allow negativity creep into even our conversations. That’s Jim!
You will do fine, Dana, the surgery is over with, your dear husband is healing and into chemo. It will have some hard days but it is DOABLE! If you need to visit with me, I will try to get to the forum more often since the workers have finally finished the work on our home!
BTW, just to cheer you some, Jim and I returned from a driving trip of just over 2000 miles for relaxation when the house workers first arrived. We were gone for 2.5 wks. Jim did just fine. And, he drove solo from our home to Orlando to visit with his best friend this weekend and had a great time. We do live (and I mean really LIVE) life in 3 months increments which is fine because we are LIVING! If something were to pop up on Jim’s CT we will face it headon and slay the b**tard cancer BC again and again. It’s what we do. Dana, don’t allow yourself to become overwhelmed on this journey. It is a hard journey and one you need to conserve your strength during as well as your husband. Stay strong, friend and know we are all here for you. If you wish to do a private message don’t hesitate to contact me that way if it is easier.
You and your husband are in my prayers! Carla
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Dana
This is a rare cancer not often seen even by the professionals. It certainly would be wrong for me to comment except for info from my own experience. I will however be watching for information as you and your doc formulate a plan of action. I remain upbeat and hopeful that your husband can get over the hump and then look forward to a more cheerful future.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
P.S. What I meant when I said “Don’t mess with statistics” is:
Don’t go looking for them and don’t pay attention to them.
I you want statistics, look for odds on winning blackjack with any given hand. :) That’s about all they are good for.When using them to determine health treatment, it is mainly to figure out which treatment offers best success rate.
Mike
PS: Yes, I know I just contradicted myself in the message above. Statistics can do the same thing. I can use the same numbers to statistically prove opposing points. So can a statistician.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
She goes by Jimswife.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I am trying to find Carla’s thread on the forum and can’t. If Carla or anyone could tell me where it is, I would appreciate it.
Thanks
Hello Dana… Even though you may not have as many replies as on other posts (as Mike said not many of us have had the experiences to share in that area), everyone here is pulling for the best possible outcome for your husband. Both of you are definitely in my thoughts and prayers.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Dana,
Don’t mess with the statistics. As of this point, with some lymph node involvement and prostate involvement, it means T4. Many have local spread to lymph nodes and are successfully treated with chemo.
CT/PET scan is one test for looking for any distant spread but that will be up to his doctor. There are other things, and no, it is not by biopsies.
I’d say it may be a good time to stop searching the internet.
Go with the assumption that he does not have mets if mets have not been found. Get the chemo and continue to get the scans to see if it shows up anywhere else. Hopefully, it will not.Declare a part of your house to be a “Cancer free” zone. Either that or maybe declare a certain time of the day as a “cancer free” time. Kind of a time out from cancer. During that time out, there is to be no thinking of or talking about cancer. It’s a put it all on hold, break from cancer. It can get all to overwhelming and consuming so both you and your husband need a time or place where you put it away and do and think about other things.
Stress is bad for everybody and it is not denial to “take a break” from it all now and then.
Not sure if you’ve seen posts from Jimswife (Carla). Her husband Jim had lymph involvement and chemo and he’s doing well now.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
The biopsy was done by the urologist after the cystectomy, he did have cancer in the prostate but that is out.
No biopsy has been done by the oncologist because we only met with him last week, he told us to do a number of tests and he will see them tomorrow.
The oncologist said it was Mx because the biopsy was done only on the old bladder and area surrounding it where the lymph nodes were removed.
I imagine we will be having another biopsy, I don’t know what to ask, how is it assessed if the cancer has gone elsewhere, what do they do, just get a biopsy from everywhere?
The doctor was pretty sure that only the lymph nodes in the surrounding pelvis have cancer as the cat scan showed nothing in vital organs but still they could only be cells and not show up on the CS.
Am I correct in assuming this?
I am lost and sick and tired of searchng the internet, the statistics just get me down.
Dana,
Unless I missed something, your husband has not been diagnosed with distant mets.
M (0/1): presence of metastasis
M0: no distant metastasis
M1: metastasis to distant organs (beyond regional lymph nodes)Use of an “X” instead of a number or other suffix means that the parameter was not assessed.
You posted above that it was Mx, which means it was not assessed. Did mets show up on some other test? If not, the probability of successful treatment with chemo is much higher than if there are distant mets.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Here is a link to a site that explains the stage and grade quite well: http://cancerhelp.cancerresearchuk.org/type/bladder-cancer/treatment/bladder-cancer-stage-and-grade
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Stage 4 means the cancer has spread outside the bladder. It’s the metastasis part that can involve other organs (lungs, bones, brain, etc.).
The reason there are not tons of replies when talking about that stage is that most of us here never got to that stage (and we’re all hoping we never do). That’s really the main reason. As for myself, I don’t know a whole lot about the details when things get to that stage because I haven’t studied it. Now, if I wind up having a recurrence and metastatic disease, you can bet I will be studying the hell out of it.
Mets is bad news. Mets is always bad news. Is mets always the end? No. Chemo can and does help and some people are cured but the numbers/statistics aren’t great for long term survival. But even if the probably of 10 year survival was 10%, if you are one of the people in the 10% group, you are 100% alive. So, from a probability standpoint things don’t look great but that doesn’t mean there is any certainty either way. I just made up the 90/10 number for the purpose of an example. I don’t know what the statistics are because they probably don’t really matter. It’s either it works (the chemo) or it doesn’t.
Hoping for the best for your husband and for you!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
The side effects don’t really worry me and my husband very much, this is more of a battle we are trying to win.
What I have noticed on the forum is that when things are really bad in terms of prognosis, I don’t get many replies.
I realise it’s probably a way of trying to not disappoint me, but there must be stories of people who have beaten cancer at this stage on the forum.I know the odds are againtst us but I just can’t believe that it is all for nothing.
The doctor said one thing, that he doesn’t agree with stage 4 as the cancer hasn’t gone to other vital organs. Is he just getting my hopes up?
My understanding of chemo is that it can be custom made (within limits) for each patient and is often adjusted a bit with each treatment. This was so in my case. I had only slight side affects. One day after chemo I drove past a bakery and the yeast aroma was almost overpowering. I had placed a towel in the car in case I needed it but did not. I believe much of the anxiety with chemo is fear of the unknown. Yes, drip but also a small needle. It is not painful.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010Sign In to reply.
