I am reading through this forum in search of additional information/experiences with advanced BC and thought I would share my dad's experience on this subject. I'm not sure if this will help or not, but perhaps something for your husbad to think about.
My father had BC in 2004 at age 64 which resulted in removal (I don't know the technical name, but his bladder was rebuilt). He was very diligent about follow-up with his Urologist (locally well-known and very respected - dad was convinced the sun rose and set with him). His URO was consistently amazed and very pleased at how well he was doing.
About a year ago, my dad began to experience pain in his right side which occasionally radiated to his back and eventually his left side. He talked with his URO and MD about the pain at each visit. As my father had previous back problems, most of his treatment dealt with pain management. URO began CAT scans and a few other tests in January which showed no cause for the pain. Another CAT in March showed same results, but the Radiologist suggested the possibility of metastatic BC. His URO then admitted that perhaps my dad should see an Oncologist, as this was "really not his area of expertise". Dad had a PET scan in late May which showed advanced metastatic BC involving the lymph nodes. He is now on Chemo which has helped tremendously (with the pain, not the cancer); however, we are now dealing with end-of-life issues for which we were not prepared.
My advice would be to push for routine PET scans - not CAT scans. I don't know why the PET scan is not recommended in the normal course of follow-up care in cancer patients to detect metastatsis early. Most DEFINITELY do not wait if any pain is noted. Insist on a PET immediately.
Hope everything is going well for you and your husband.
P.S. If possible, ask your husband's URO if he would recommend a second opinion. If he appears insulted or indicates it's not necessary, that is the time to PUSH your husband for one. If, however, he agrees that it is a proper decision and maybe even offers to help make arrangements with a University, then he is a good doctor and your husband's trust is not misplaced.
What if the urologist has done everything right by your husband while you're worried you did the wrong thing?
You say >
The problem is that my husband has faith in his urologist, whereas I do not. I have been keeping quiet about my misgivings because I know my husband does not need any more doubt or confusion in his life at this time. <
I sympathise with you, I know how stressful the situation must be, especially when treatments end and there is this lack of focus and scary waiting periods. It's awful. I've been on both sides of the fence now and I have now seen for myself (as a 'patient') that having faith in the doctor is at least half the battle. If your husband has faith in the course of action and the care he's getting, that says a lot.
As caregivers we want our loved one to feel secure in the path they've chosen. It's not for nothing that cancer patients tell each other, "Once you've chosen, don't look back. Don't second guess the choices made." Because that is the way to insanity, and I've been there - as a caregiver in a worst case scenario. Which brings me to the question, what about support for you? Who's taking care of the caregiver?
If there were some reason you're unsatisfied with the treatment your husband is receiving locally, like lack of equipment or less than quality care, or if you live in a rural area far from a good cancer center, these are some reasons for second opinions. A second opinion is always justified when the diagnosis is cancer and life is on the line. My concern is about whether now is the right time to pursue this.
Lou is right, talk with the doctor and discuss your feelings, your doubts and especially your questions regarding your husband's follow up and upcoming test results. Make an appointment for yourself if you have to.
>My understanding is that we are now entering a "wait and see" period - since surgery removed evidence of cancer. If the post-chemo tests appear clear, would there be a benefit to get 2nd opinion at this time, or should we wait for a time (heaven forbid) that the cancer reappears? <
If there are symptoms of any kind that do not get diagnosed to your satisfaction then that's a reason to go after a definite diagnosis. If a second opinion is called for, the current doctor should not be offended in any way.
>I know we all spend a good deal of time trying to second guess our actions of the past. Unfortunately, it is obvious at this point that I should have pushed for 2nd opinion after first occurance of cancer in 2000. Can't undue that, but I can be more proactive from now on. I just don't know "when" to be proactive. Ideas?<
Don't second guess yourself. There's a good chance everything went just as it should. You've learned a lot about what it is you're both facing but there has to be a time to back off. After all the stress and hustle of treatments and procedures over the last period, it's hard to focus on how to relax and try to get down to the business of what survival is supposed to be about-enjoying life. Try to take things one step at a time, one day at a time. Do what you need to pamper yourself.
Have you ever looked at the pages on WebCafe that have been contributed by caregivers? We also have links to resources; blcwebcafe.org/caregivers.asp
I've not experienced or had anyone close to me experience metastatic bladder cancer, but it's my understanding from what I've read that metastatic disease is treatable. It can also sometimes give a patient years with a good quality of life, as long as they're diligent about follow-ups with their doctor. I know you're unsure about your husband's doctor, but why don't you sit down with him and tell him about your concerns for your husband. You don't have to tell him right off that you don't trust him anymore, but just see what he has to say about your husbands current situation. He may be able to reassure you by giving you the information you need.
I don't know how you might handle this, but I suppose it's possible your husband might not necessarily need to be present with you during this appointment with his doctor. I would think since you've been through all of this with him, that his doctor knows you and wouldn't have a problem speaking with you seperately. It all depends on whether or not you want your husband to hear about your concerns right now, perhaps you will be able to come to an understanding with the doctor and your husband's faith in his doctor might not need to shaken at all.
Am I making sense to you, I hope so. I suppose it sounds wrong of me to suggest you see the doctor alone, but you mentioned your husband not needing anything more to add to his level of stress. Know that those of us here on the WebCafe want you to do what's right for yourself and for your husband, and know also we'll keep you in our thoughts and prayers. Let us know what you decide to do, and how your husband's doing as well.
My husband (age 59) recently had reoccurance of cancer (original 2000 - superficial) and had RC w/ileal conduit June 6. He had 4 cyles of chemo prior to surgery and 3 post surgery (was scheduled for 4 but 2 treatments were canceled due to upper resp. infection and low blood counts. He is scheduled w/his urologist for follow up tests in a few weeks.
The problem is that my husband has faith in his urologist, whereas I do not. I have been keeping quiet about my misgivings because I know my husband does not need any more doubt or confusion in his life at this time. However, I have decided that, when appropriate, I am going to push for him to get a second opinion (probably at University of WA Medical Center - about 300 miles from us).
My understanding is that we are now entering a "wait and see" period - since surgery removed evidence of cancer. If the post-chemo tests appear clear, would there be a benefit to get 2nd opinion at this time, or should we wait for a time (heaven forbid) that the cancer reappears?
I know we all spend a good deal of time trying to second guess our actions of the past. Unfortunately, it is obvious at this point that I should have pushed for 2nd opinion after first occurance of cancer in 2000. Can't undue that, but I can be more proactive from now on. I just don't know "when" to be proactive. Ideas?