Just Found out Husband has Stage IV BC

Hi All

I have posted a few comments since I found this page. I do want to thank you all from the bottom of my heart for all of the wonderful information, prayers, hope, encouragement....the list is long.

My husband (Ben) started getting pains in his periformis muscle, hip, along with numbness in his feet in March. Had an MRI to see what was going on. Ben happened to question a footnote on the MRI report regarding his right kidney. He questioned this because his Mother passed away from brain cancer that was really metastatic kidney cancer.
So... They did a CT scan and on June 25th we were told that he has Stage IV which has invaded the pelvic region and prostrate and more than likely lymph nodes. His right kidney was blocked by the tumor where the ureter enters the bladder. This tumor is different, in that it apparently did not begin inside the bladder, therefore, no blood in urine.

Today was the first day something went right. The urologist was able to (barely) get a stent into the ureter, avoiding a tube in his back. We see the Oncologist on Friday. This has all happened so fast. I have had my PC attached to my hip, and have done extensive research. I am so thankful I found this community, as you all have done so much work already and have so much to share.
OK, I'm losing my train of thought now....

cat22

By cat22
Posted July 9, 2009 at 11:49 pm
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Hey Cheyenne,

Thanks for the post and your wishes for good things for us in the future. Agree with the alcohol/ dehydration issues. So hoping to hear more positive news tomorrow after the presentation to the tumor board. I feel like we were definitely hit with the worst case scenario in the beginning, and are now finding it may not be quite as bad. Still Stage IV, but hopefully not as invasive as first told (we hope). We'll take what we can get at this point.

cathy

By cat22
Posted July 9, 2009 at 11:39 pm
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Ben had an MRI today, CT and MRI will be presented to the tumor board tomorrow. Got a call from Ben's Insurance and they have approved the 2nd opinion, so tomorrow we will be on the phone begging for an appointment asap with the Urological Oncologist Specialist at UCSF. We just started this journey on 6/25. So much is happening so fast. Thankful that approvals came thru quickly for the repeat MRI to verify pelvic involvement, and the CT scan to check the lungs. Thanks to all of you for your support. We're still in limbo, but getting closer to knowing just what is going on, and what the course of action will be taken....

cathy

By Cheyenne
Posted July 9, 2009 at 11:23 pm
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Well there is a lot of information to absorb, all excellent info. Based on what I have read I fully agree with a 2nd. opinion at a major caner research/treatment facility. I think that is critical.. I am not convinced that surgery cannot or should not be done, but I am not a physician. Just seems strange to me for some reason that a cystoprostatectomy is not being offered as a primary intervention. For sure alcohol and caffeine are dehydrants and they also cause depletion of Vit C and some of the B12. So that is an important consideration. Best wishes to you and we all we be available to you.

By cat22
Posted July 8, 2009 at 5:23 pm
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Thanks JJ. I think we pretty much agree that the alcohol is an issue.

Update:

We did see a Neurologist today and found out that Ben's foot pain is probably from a pinched nerve, not pressure on a nerve from the cancer, which was good news. He is having more tests done in a few weeks, but just knowing that it is NOT peripheral neuropathy is a good thing, as he will now have the option of Cisplatin vs Carboplatin.

He is in getting a CT scan of his chest right now. Tomorrow will be another MRI that covers the pelvic area. (Keep your fingers crossed). On the MRI done in May, the oncologist does not see any swelling in the lymph nodes. We keep getting little bits of hopeful news. Our biggest hope is that there will still be an option for surgery. The oncologist will meet with the tumor board on Friday. We also are waiting to get approval from insurance to get an appointment with a Urological Surgeon and Urological Oncologist Specialist at UCSF. This is all happening so fast, our heads are spinning.

Thanks for your continued prayers and well wishes.

Cathy and Ben

By jj803
Posted July 8, 2009 at 1:35 pm
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In fact alcohol can precipitate nerve damage as can B12 deficiency which is often associated with excess alcohol consumption and dietary deficiencies.

JJ

By BCAN_Claire
Posted July 7, 2009 at 3:33 pm
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Yes, alcohol often makes neuropathy/sciatica worse.

Here is an article about chemo-induced neuropathy that advises to stay away from alcohol, contact with organophosphates and mosquito spray, as well as gasoline fumes. It also encourages consumption of a diet rich in antioxidants.

http://www.supportiveoncology.net/journal/articles/0602070.pdf

I am very glad to hear that you are going for a second opinion at a comprehensive cancer center. Stage 4 disease is often treated differently than stage 1-3 disease. So although the standard of care for muscle-invasive bladder cancer is removal of the bladder and prostate (with or without chemo before or after), the best treatment for your husband may not include surgery at this time.

Please feel free to call the Bladder Cancer Advocacy Network at 888-901-BCAN if you have any questions you think we may be able to help with.

Claire Saxton
Executive Director
Bladder Cancer Advocacy Network

By cat22
Posted July 7, 2009 at 1:28 am
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Hi,

Update: We are going to get a 2nd opinion at UCSF asap. (our current Uro office is trying to expedite the approval through our Insurance). Ben has an appointment with a neurologist on Weds to further examine his issue with neuropathy.

Another question: When Ben doesn't have anything alcoholic to drink, his sciatica/neuropathy pains seem much better. We had company this weekend and had wine the last three nights. It definitely seemed to affect the pain in his hip/leg/foot. I think the alcohol may be affecting the nerves (dehydration?). This is the third time that I have noticed that alcohol seems to have a negative effect on his leg pain. What do you think??? This is so scary, everything is happening so fast, and I hardly see anything about Stage IV BC.

cat22

By HighlandGuy
Posted July 5, 2009 at 7:26 pm
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There are several issues you may wish to pursue. When it comes to bladder cancer the medics are normall concerned with two factors, namely is it invasive (namely has the cancer grown into throught the outer surface and into the musle) and the "grade" (a measure of how aggressive the tumor is likely to be growing).

If it is "invasive," especially at the forward area of the bladder, the common treatment is a radical cystectomy. If the tumor is a grade 3 or 4 (the most aggressive) this becomes more urgent.

Normally doctors are best able to determine if a tumor is evasive by performing a "TURBT" by linserting a tube device into the pinus and simple cutting out at least a portion of the tumor. This procedure may be skipped if they can tell from the scans that the tumor has definitely progressed into the muscle.

If Ben's tumor is likely or clearly invasive and certainly aggressive, it would appear that it may best to go directly to a radical cystectomy rather than treating it first with radiation. The basis for this is that invasive tumors will normally metastasize if not removed.

I am not a doctor, so I mention this to you and Ben that you can understand what may be the problem, be able to intelligently question your urologists and oncologists and if you don't get good answers, seek an immediate second opinion.

Sincerely

HighlandGuy

By jj803
Posted July 5, 2009 at 2:51 pm
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I think that sometimes radiation and chemo are used to shrink tumors so that surgery can be more easily accomplished. I don't think it always works out that way as there can be scarring, particularly from radiation, that may make things technically more difficult, but if the tumor is smaller it may still be more effective overall. Best wishes to you both,

JJ

By cat22
Posted July 4, 2009 at 3:13 pm
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Hi JJ.

Thanks for the post. Yes, Ben did have a transurethral biopsy a week ago Weds. Oncologist met with Urogist on the next day (6/25) and BC was confirmed and we were called. I forgot to get a copy of the path report, will get that next week.

My fear is that now that the Oncologist is leaning toward radiation, there will now be no possible option for surgery. I am hoping the new MRI will give hope for delaying radiation. I guess I'm grasping for straws, but I refuse to give up any hope or faith at this point.

cat22

Happy 4th to you all!

By jj803
Posted July 4, 2009 at 2:25 pm
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Hi Cat,

What Highland Guy says about CT or any other scan or test, except for biopsies is correct. They reveal abnormal areas that may or may not be cancer. Of course, if there are multiple nodules and a known cancer, the odds are high that they represent a cancer and often are treated that way with or without biopsies of the "metastatic" nodules. On the other hand, it is more reassuring to have confirmation when embarking on treatment of these. From your post it sounds as if no biopsy has been done of any of the masses to prove that it is a malignant process or what the tumor type is. If there has been no biopsy or cytology indicating the "cell of origin" (type of cancer), unless there are extenuating factors making that course unwise, I would think it would be wise to determine with certainty that this represents urothelial cancer so that the most appropriate therapy can be determined. It also sounds as if your oncologist is quite thorough, but the fact that the determination of appropriate therapy must be a difficult choice (inferred from his indecision), I think a 2nd opinion would be wise. Be assured that most drs. are not offended by this and understand that you are just wanting to base decisions on the best possible advice and to see if others have different opinions and options. Don't be surprised if they do and it doesn' necessarily mean one is wrong and one is right. Best wishes for you and Ben,

JJ

By cat22
Posted July 3, 2009 at 8:43 pm
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Hi All,
I'm confused (again). We just met the oncologist a few hours ago. He just called and told Ben that he is changing his recommendation. He now believes radiation is the best way to start, as he saw how slowly Ben was walking due to the neuropathy. He pretty much told Ben that the odds of shrinking the tumor enough to do surgery were pretty slim, therefore radiation, he feels, is the best alternative. Of course, he will re-examine all this with the tumor board next Friday with the new test results. He is now doing what he can to get his MRI and neurology visit scheduled before Friday. I know very little about radiation treatment. Guess I've got more reading to do.

cat22

By Cheyenne
Posted July 3, 2009 at 8:15 pm
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Well, I guess I'll see you on the fourth if you are cooking. I do wish you a happy and safe holiday. and enjoy it. Cancer must be taken seriously of course, but please take HighlandGuys advice. And keep in mind that things can be done today that were not possible even 5 years ago. If you keep a good frame of mind and healthy diet you have a lot going for you. This is by no means the end of the road, not at all. A big hill maybe, but I am sure ya'll have had to go up big hills before. Anyway, you get a better view when you get to the top. Get to meet a lot of pretty nurses too! Oh, sorry, well, just don;t tell your husband, although he will figure it out! My prayers are with you, God bless, things will be OK.

By cat22
Posted July 3, 2009 at 6:06 pm
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Hi All,

We just got back from meeting the oncologist. I'm still reeling from trying to remember what all was said during the hour+ we were there. He talked for awhile, presented what he felt the best options were, etc. He showed us the CT scan. You cannot see where the bladder ends and prostate begins, as the tumor is in the middle. Some good news is that he indicated that the lymph nodes were not swollen, which means it might not have spread to them. Because they thought the issue was in the lumbar region, the CT scan did not go low enough to see the pelvic region. Another MRI will be scheduled.
As it turns out, the

HighlandGuy: Oncologist graduated from UCSF, and keeps in contact regularly with the specialist we were considering for a second opinion. He will be consulting with her as well as with the tumor board and will also have Ben see a Neurologist regarding his neuropathy.

His recommendation so far is carboplatin / gemcitabine. (Carboplatin because Ben has pretty severe neuropathy in right foot). He does not recommend radiation initially, as, although Ben's cancer is inoperable, it is POSSIBLE that the chemo could reduce the cancer enough to do surgery in the future. I'm not sure I'm fully understanding all of this, so I look to you guys for more insight.

So.... I am ( I think) a little more optimistic today than I was yesterday, but everything hasn't quite sunken in yet. Ben still was hoping that surgery would be an option, and we hadn't really discussed what each of us were expecting or hoping to hear. This has all just happened way too fast.

If I remember more, I'll post later.
Thanks again to you all for your support.
cat22

By HighlandGuy
Posted July 3, 2009 at 4:26 pm
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Hi Cathy,

One comment: CT scans reveal growths, such as tumors. They may or may not be cancer. CT scans at best can show that there is a possibility of cancer. They cannot diagnose the disease. I know this is an issue of samantics, but it can be an important one.

I mentiaon this to encourage you to go to Stanford. They have the experience with many cancer cases that few other cancer treatment centers possess.

We can never afford to take risks when so much is at stake.

Please keep us informed.

HighlandGuy

By cat22
Posted July 3, 2009 at 2:02 am
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Thanks, Leslie,

We will definitely get a second opinion, like I said, probably at Stanford or UCSF. I read about Highland Guys experience with BC in his profile, and it gave me hope. Thank you again Highland Guy!

I am really enjoying the healthier diet, and Ben is totally going for it as well. We've only been seriously on this diet since Saturday, but I feel it is really helping me stay focused and less stressed. We worked in the yard today which was nice. We are both pretty serene tonight. Big news comes tomorrow at 11:15 am. Will be in touch with you all tomorrow evening.

cat22

By Leslie45
Posted July 3, 2009 at 1:53 am
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Cat,

My thoughts and prayers are with you and your husband. Please follow Highland Guy's advise by going to a reputable and major cancer center for a 2nd opinion and treatments.

Going organic is definetly the right way to eat.

Leslie

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