help please

This is kind of an addition to my last question re treatment..David was put in the hospital because they found small tumors in his bladder which were surgically removed yesterday...Also will be doing a biopsy on something found in the cat scan "soft tissue and fluid" at the site of the removed kidney today. The oncologist flew in and out of Davids room and just said "we will start chemo as soon as you are out of Hospital  Nothing said about what kind or anything. They did put in  a Port a cath, so I guess its going to be something IV. Can any one tell me what is the most common kind of chemo treatment or what to ask the Dr when I can pin him down? I feel so lost and confused at this point any help will be so appreciated

Thank you

Sandy

 

Hi,

If things are moving to quickly...slow them down!!!

It is your right and responsibility to COMPLETELY understand the problem (what is this new concern), and the treatment options (the chemo choice should be yours, after you research and understand the options).

If the doctor doesn't have time for you...why are you giving him/her your time?  Get another if this situation doesn't change.  Don't get bullied!!!

I have pancreatic cancer...time is my most valuable possession...but I always take time to understand the next step...you should too!

God Bless

Sandy,

 I agree with Mark B.  Our doctors are essentially our employees.  We pay them to take care of us.  Therefore, you have every right to expect them to be available to let us know what is going on with our care of the care of a loved one.  I know how hard this is for you, and all I can say is hang in there for your husband and be his advocate.   

I agree-get a doctor who will talk with you. And write down your questions. I just went through chemo, and the doctors loved that I wrote out the questions. It made it easier on both of us. The port is a wonderful thing. Get Linacain cream to put on it, one or two hours before chemo, under a piece of saran wrap. The injection will be pain free. Get your husband on a good diet. Yogurt, for gut bacteria. Every day. No white carbs the day before and two days after chemo-causes constipation, which a chemo drug makes worse. Stool softeners twice a day day before and until he knows he is fine. Mirolax on hand. Do not let a day go by without being normal in that department. Gatorade is great for the metallic taste. Salt and baking soda in water for mouth sores. And don't let all the talk of fatigue get to you. That comes from low blood counts, and that happens slowly over time. I only felt tired and slow the last month, and I was on dose dense chemo. Keep exercising. Do yoga. Tell him he must use his mind to keep this all in perspective. I never had nausea, but I took the meds and used my head regarding food. Go out, have people in, act normal, and plan the slower activities as time goes on. I got my entire house organized. As a friend said, it is not a walk in the park, but it is not a horror show either. Good luck.

 

On 7/2/2008 WOLFLADY1020 wrote:

This is kind of an addition to my last question re treatment..David was put in the hospital because they found small tumors in his bladder which were surgically removed yesterday...Also will be doing a biopsy on something found in the cat scan "soft tissue and fluid" at the site of the removed kidney today. The oncologist flew in and out of Davids room and just said "we will start chemo as soon as you are out of Hospital  Nothing said about what kind or anything. They did put in  a Port a cath, so I guess its going to be something IV. Can any one tell me what is the most common kind of chemo treatment or what to ask the Dr when I can pin him down? I feel so lost and confused at this point any help will be so appreciated

Thank you

Sandy

 

 

Hi Sandy,

Actually, the questions you asked us are pretty good questions to ask the doctor.  And this doctor should schedule at least one follow up visit after David is out of the hospital and before he starts chemo.  If he doesn't, then insist upon it.  You have the right to have a chance to become informed before consenting to care.  (You may find the dr has more time for you in the office setting.)

And I agree with other responders in that if you don't get answers and respect from David's doctor, confront him and tell him you want to know what's going on, in terms that you can understand, and that if he isn't willing to take the time required to help you understand and make informed decisions, then you want a second opinion.

However, be forewarned:  switching doctors at this stage of the game will not be easy. Many doctors are hesitant to pick up patients whose care has been started by another physician, especially if they have just had surgery.  Difficult for the new doctor to know just what the condition was before surgery and exactly what was done in surgery.   That's why I recommend that if you need to make a change, you tell David's doctor that you want a second opinion, rather than just saying you're going to find another doctor. 

Every patient has a right to a 2nd (or 3rd, or 4th, etc) opinion, and it is the primary doctor's responsibility to see that you get a referral to a decent practitioner.  It is also the primary doctor's responsibility to see that the consulting physician (the one giving the 2nd opinion) gets the appropriate medical records to give that 2nd opinion.

Even though the primary doctor SHOULD make sure another doc gets all the info he/she needs, it would be wise for you to get copies and take them with you. David has a right to copies of ANYTHING in his medical record.  Get not only paper copies of scans, etc, that were done, but request cd's of films of them too - that way the new doc can actually see what the problem was.  Make sure to get copies of the OR and recovery room reports, and notes from hospitalization.  Some medical records depts will not want to give these out (mostly because it's a lot of work to copy the info you need), but don't let them get by with telling you that you can't have this or that, or that you need the dr's permission to get this or that.  That's just plain B.S., and mentioning that YOU know that the law says you have the right to a copy any part of his record you want should be adequate to  stop that kind of B.S.

Also, taking a look at his records yourself can be valuable.  While the medical terminology can be pretty incomprehensible, some time with Google or my favorite, Goodsearch, can help you make sense of the gobblety-gook.  Plus it will help you be prepared with questions that you might not otherwise know to ask.

Don't let yourselves be pressured into making decisions with which you are uncomfortable for the sake of time.  Once surgery has been done, most cancer patients are not so incredibly desperately ill that they do not have the luxury of a few days or weeks to recover and make decisions.  And a good oncologist should allow time for healing, anyway.  Chemo doesn't just attack cancer cells, it attacks ALL cells.  Pretty important for David to have time to recover before starting the assault on his system.  If the doctor says there is no time to let him get his feet even a little more under him, make sure the doctor answers "why" to your satisfaction.

I wish you and David the best.

Sincerely,

Tre 

I would suggest that you get back to the Doctor ASAP and write down the questions, etc.  Getting 2nd, 3rd or 4th opinions at this point may do more harm than good and jumping to conclusions as to the competency of your current doctor may be a bit premature.  I would also recommend that when you sit down with the Doctor, make  clear what you need and expect.  If if he does not perform to your expectations quickly, then I would proceed to the next step and work with another Doc.  By the way, a port is a much better way to go than getting IV's in your arm each day of the procedure.  I know.  I just went through 6 months of chemo using the port.  Good Luck and God Bless

You tell that Dr. that you need to understand what is being used and why and the effects of it.  You are paying his salary, he needs to answer anything you ask and give you the time you need.  Otherwise, I would seek out a second opinion.

On 7/2/2008 WOLFLADY1020 wrote:

This is kind of an addition to my last question re treatment..David was put in the hospital because they found small tumors in his bladder which were surgically removed yesterday...Also will be doing a biopsy on something found in the cat scan "soft tissue and fluid" at the site of the removed kidney today. The oncologist flew in and out of Davids room and just said "we will start chemo as soon as you are out of Hospital  Nothing said about what kind or anything. They did put in  a Port a cath, so I guess its going to be something IV. Can any one tell me what is the most common kind of chemo treatment or what to ask the Dr when I can pin him down? I feel so lost and confused at this point any help will be so appreciated

Thank you

Sandy

 

 

It certainly is overwhelming.  You might consider a new doctor who will take the time to explain the different treatments available and their various side effects.  Don't be rushed into making a decesion.  It's unlikely that a week or two will make a difference.

As to questions to ask, let me suggest Greg Anderson's book,  Cancer, 50 Essential Things To Do.  This helped me a lot in determining what questions to ask.

Support is critical.  Cancer Compass truly helped me the most when I was intially diagnosed since I could call upon the wisdom of others who had gone down my path. 

 You can also get a tremendous amount of information from support groups.  Although I am not personally acquainted with either of the following, there are two networks I have heard of for bladder cancer:  Bladder Cancer Advocacy Network at www.bcan.org and Bladder Cancer Cafe at www.blcwebcafe.org .  Also check out the Amrican Cancer Society site and National Institue of Health site for bladder cancer.

May G-d be with and your husband.

Michael12

 

On 7/2/2008 WOLFLADY1020 wrote:

This is kind of an addition to my last question re treatment..David was put in the hospital because they found small tumors in his bladder which were surgically removed yesterday...Also will be doing a biopsy on something found in the cat scan "soft tissue and fluid" at the site of the removed kidney today. The oncologist flew in and out of Davids room and just said "we will start chemo as soon as you are out of Hospital  Nothing said about what kind or anything. They did put in  a Port a cath, so I guess its going to be something IV. Can any one tell me what is the most common kind of chemo treatment or what to ask the Dr when I can pin him down? I feel so lost and confused at this point any help will be so appreciated

Thank you

Sandy

 

 

Had kidney and ureter removed five years ago... diagnosis was bladder cancer, had a small tumor in the bladder removed.  We did 6 months of chemotherapy, gentamyacin and cisplatin... Your oncologist has to be very careful that there is no damage to the kidney you have left.  I have cystoscopy every 6 months and praise God cancer free now.  My oncologist started with 3 months, but I did so well on it, she talked me into another 3 months.  ...and all my doctors now with my excellent results tell me how lucky I was to have such a good oncologist.  Sad part is she retired right after I got off the chemo.  God Bless you!