Trusting your onc - is a cardiologist necessary?

[swimangel72]

Hi everyone - sorry I haven't been a regular visitor - hope you all had nice holidays - and I pray that 2009 is kinder and gentler to all of us.

I finish my Herceptin treatments in April - I had a Muga scan (67%) at the start last April - then when I switched oncologists in June, I had an electrocardiogram which I was told was "normal". I had another one I believe in September but haven't had any since. At my last infusion last week, I asked the nurse practitioner when I should be getting another one and she said I only need it once every 6 months, which doesn't sound right at all. I think she forgot that I'm getting Herceptin. I'll be seeing my oncologist this week, and will of course ask him - but now I wonder if an echocardiogram is a thorough as a Muga scan - and why do some oncologists use one over the other? Also - am I being too nervous thinking that I should see a cardiologist? My nervousness has to do with a basic lack of trust in doctors........after my bad experience getting the MRSA staph infection, I've come to realize that so much depends on who is reading a report. I present as such a healthy LOOKING patient that sometimes I don't think doctors and nurses are giving me the same concern and care they give to other sicker patients. I do sometimes feel out-of-breath - and at night, I sometimes feel like my heart is skipping a beat - but perhaps this is all in my imagination. Some days I'm so tired - other days I'm fine - and I realize it could just be the thyroid meds or the Arimidex. Still - has anyone else felt the same lack-of-trust and nervousness about their hearts and gone on their own to a cardiologist?

[Sherryg683]

I have been on Herceptin 3 years, in the beginning they did an echo but then they switched to Mugas. I am of the belief that Mugas is what is better to tell how efficient our heart is pumping and is what we should be getting. I went a year this time before one was ordered. In fact it was the nurse who noticed it had been so long and said she would tell the doctor to order it and that I needed to have them done every 6 months. I think its what you said, I have been so relatively "healthy" that my Oncologist just sort of assumes all is well. I was surprised to see that my muga was 70. It's funny though, my heart is something I haven't really worried about. I worry about everything else but not that...go figure..sherryg683

[Becky]

Adjuvant Herceptin protocol states that you should have one last echo or muga after treatment ends. Since you started with mugas with the old onc, you should tell the new onc you want to end with a muga in order to compare apples to apples.

Both tests are similar. My onc has always used echos and I asked him why because if I had gone to Sloan Kettering instead I would have had mugas. He told me that since echos don't use nuclear medicine (radioactivity) he felt that if a person is healthy, the range that echos give is fine. Muga gives a precise number and if he wants to know if an elderly person's score really is 50 or better as it might change his plan on what kind of chemotherapy to give. He said if I ever had an echo on the edge, he would have wanted a muga to see if we should continue Herceptin or not. That didn't happen.

Lastly, since my echos were always so good, I never got an "end of treatment" echo as warranted by Genentech protocol. However, that doesn't mean you can't say you want it and want a muga to be able to truly compare start of treatment/end of treatment scores.

[Sherryg683]

Becky, that makes since. My mugas have always been good, so if I had the choice I would choose an ecko. They are a lot quicker and you avoid the radiation. I can see that if you have a bad ecko, then you may want to follow with a muga. I might talk to my oncologist about this for next time. Although, he doesn't seem to ever be in a hurry to do either for me. ..sherryg683

[swimangel72]

I saw my onc yesterday and he agree I needed another muga - so I have to make an appointment this week. I'm glad I remembered to bring it up - and it makes you wonder how often we have to be our own advocates - what would happen if we didn't know how?

[ElaineM]

You are right Kathy. We have to be our own advocates.
Docs have so many patients and even though the info about the last time we had a test is in our files they sometimes don't see it.
I keep old appointment calendars for several years, so I can check and see when the last time I did big tests. Sometimes after I finish a test I write a note in the month the next time I am supposed to have a test. If I know something should be done every 6 months and I did it in December I put a note at the top of the month of June. Then I will mention it to the doc at the end of May or the beginning of June.
I also carry a note book to all my appointments where I write down everything-------things I am supposed to do, my questions, the docs answers etc. etc.
Good luck being your own advocate. Take care.

[swimangel72]

Good news - my muga scan on Saturday gave me a score of 63% - not bad since my first one was at 67%. It puts my mind at ease - especially at night when I can feel my heart beating and I keep imagining that it's going too fast - or too slow - or skipping a beat. Worry makes every little thing seem abnormal. Fortunately I have only three more months on Herceptin - hope it goes fast!