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Second Opinion

7 years 1 month ago #43029 by danielle
Jaxmad Hi there.
My husband was having the same treatment as your's and many times we had to postpone due to low blood counts. We felt very deflated at the time, but as others have pointed out, this seems a very common ocurrence.

Unfortunately my husband's bc has spread to his rectum (he has also a colostomy as well as an ideal conduit) and the CT which we did a week or so ago,has shown there is no change after 6 months ...No change for the better or none for the worse.Thank goodness for small mercies..
We shall be at the clinic again on Monday 10th for another cycle will begin of Gemzar/carbo... We have not lost hope and pray this time it will get easier...

Like you, we also feel frustrated and ignorant sometimes as to what is going on, but I come on here, to this marvelous group of people and get some answers..

danielle

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7 years 1 month ago #43021 by Jmema
I finished 6 rounds of chemo on the last day of February. I missed my scheduled chemo 3 different times because of low blood counts and required a few blood transfusions. Even if his scheduled is "off" sometimes they manage to give you what you need and hopefully he will be strong enough to have as much as they have planned. I found the nurses were always very good in explaining things. I hope you get the answers you need and it all goes well.
Blessings...Jean

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7 years 1 month ago #43020 by sara.anne
Excellent. Sometimes the medical people are so caught up in what they are doing that they do not realize that we are left behind!! Hope you get some answers to your questions.

Was the CT scan done at U of Iowa? Sometimes they don't send the results to the patient (and that annoys me) but the doctor just "explains" what was found. You are fortunate to have received the report, and now you can ask your questions.

Please don't misunderstand our comments about getting a second opinion. We sometimes joke that the name of this Forum should be THE GET A SECOND OPINION SITE!
We are always urging people to get a second opinion from a specialist in bladder cancer. What Mike and I have been saying is that probably the questions you have now can be answered where you are.

The delay in chemo because of a low blood count would be standard no matter where you are. Time is NOT being wasted; obviously the chemo is having an effect, as evidenced by the low blood counts. When these come back up to acceptable levels, the chemo will continue and you will be right on track. To go ahead with treatment when the blood counts are low would be dangerous indeed. And stopping chemo to go somewhere else WOULD waste time right now.

If, after the chemo is completed, you still feel that your husband is not getting the correct treatment, that would be the time for a second (third?) opinion.
Mayo would probably be the best place; you would want to go where they have a lot of expertise in treating invasive bladder cancer...not just cancer in general.

Please hang in there for now. Get your questions answered. And THEN decide what is best for you and your husband to do.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 1 month ago #43019 by jaxmad13
Thanks Sara Anne and Mike! I have put in a call to the nurse and I am waiting for her to call me back. I will do as you suggest Mike and see what she has to say. I'm hoping that she can answer my questions and hopefully the communication will be better. I am also going to mention something to the doctor next week about how I feel.

The other frustration is I received a final result of my husband's CT scan from June 27, 2012 and when I read it there are some concerns that I have. I don't understand why I am receiving this now and I just want some clarification of the findings. This is something I have sent them a message on and am waiting for the nurse to reply to me on.

I know of others who have gotten second opinions and sometimes I don't think it hurts just to make sure that what is being done is what should be done. I just feel that time is being wasted and we don't have time to waste, it is my husband's life after all!

Thanks again!

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7 years 1 month ago #43015 by mmc
To reiterate and add to what Sara Anne said, call and ask to speak to his nurse. When you get the nurse on the phone, say "I'm so confused and feel like we are alone and nobody is explaining anything to us. You may be experts about this but we are not and we are terrified right now. Please help us understand." If the nurse can't help, ask her to have the doctor call you.

You have to ask. Also, take notes. They are doing the right things and when counts are low they have to delay. It is not letting the cancer win. It it preventing the chemo from killing him or seriously damaging him when his body would be unable to tolerate it.

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...

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7 years 1 month ago #43014 by sara.anne
I really don't think that what you need is a second opinion!! The treatment that your husband is getting is exactly what should be recommended for his condition. It is not uncommon for a treatment to be delayed because of low blood counts; the chemo agents used ARE toxic, which is how they kill cancer cells. If a patient's blood counts drop, it would be malpractice to give more chemo until they have had a chance to rebound. This often happens, and, when they have recovered, the treatments will continue. Others may chime in here, but I know that there are several people on this Forum who have done this, had to wait because of low blood counts, and then continued successfully.

Having said that I didn't think you needed a second opinion, I think you do need to get some communication going with his doctors. (Hint: I often find that by called the doctor's nurse I can get either really good information OR a call back from the doctor.) Don't be afraid to ask LOTS of questions and to be a bit assertive!

You are at one of the best places for bladder cancer treatment. Also, I doubt that another site such as Mayo would consider taking him for treatment until this series is completed. However, don't ever think that you shouldn't ask questions or (politely) note complaints because the doctors "might be upset." You are the customer here!!!

Please find someone...doctor, nurse, clinic administrator...who can answer your questions.

And best of luck to you both.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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