Dec 29, 2012 - 8:55 am
I began this journey at a major cancer center in my area, (Orlando), MD Anderson, thinking they are so renoun they would be the best. My surgeon was ok enough, but if you recall, I had a less than encouraging experience with him and the 2 oncologists thru that center, as far as making me go on wild goose chases to get some help with my anxiety. I had 2 very strange and stressful experiences with psychiatrists, that frankly I didnt really need , I just really needed some xanax intially, then a consult to determine if I should be in antidepressants. But anyway, thats history at this point. The other factor was the trip to MDA is about 45 mins thru heavy industrial traffic. Anticipating both the 6 chemo visits ahead, and then the 33 rad treatments, the trip is really not applealing. However I would not pick a doctor only based on distance.
I started asking around for a recommendation for an oncologist and had some good sources to ask. First I asked my former across the street neighbor, who , when she lived here, was an oncology nurse. She moved about a mile away, but we are still in touch. She is now the Chief Nursing Officer at Celebration Hospital, which ironically has , also a very well respected cancer center, so I figured she would be a good resourse. She recommended Dr David Robinson, said he was kind, warm, very experienced and would be a good fit for me. Then my husband, who is a remote control airplane hobbyist, has a flying buddy whose son happens to be a surgeon, at that very hospital. He asked him, and ironically, HE came up with the same doctor! Also interesting, he would be the surgeon that does the port. A good sign. Had wonderful comments about him. Then lastly, one of the gals in my local cancer support group also saw him, and loved him. So I had a referrel for this doctor from a Nurse, a Doctor and a Patient. I made the appointment.
Yesterday I saw Dr Robinson, and he lived up to his references. He was really very nice, warm, even funny at times. I felt ok with him. Im still terrified, and have some decisions to make, but he was really nice. Also, his office, and where the infusion center is, is the Florida Hospital Cancer Institute, the off site location for Celebration Hospital. This really nice facility is 10 minutes from my house. Also very appealing.
Now comes my dilemma and questions, maybe you very smart and "been there done that" group can lend some input.
1. Because of my HER2+ he highly recommends going forward with 6 rounds of TCH chemo. He assures me they do everything they can to mitigate side effects. He also gave me the rundown on the hormone therapy to follow. Im very concerned about bone and joint pain, as I have that already, and cant imagine it getting worse. Very fearful of that. He also showed me a print out of a tool Adjuvant. It broke down my % chances of being alive and cancer free in 10 years. He mentioned that the addition of Herceptin increases that a bit. But the wierd thing about this print out, and what I did not notice when he went over it, so I could not get him to clarify, was the fact that this printout had information only for ER status, +/-, not HER2. So I dont really know what the chances difference is. But what troubled me about this particular set of data, is it shows that if I do nothing but rad, I have a 51% of alive and cancer free in 10 years. If I do Hormone therapy with no chemo, that goes up to about 70%, to add chemo to the mix it only goes up to about 80%. It really is only showing a 10% additional benefit to go thru all that chemo would put me thru at 62. I wish the % gap was wider, it would make the decision so much easier. He said, that because of the aggressive nature of the HER2 he would highly recommend chemo. But could not really explain the relativly low additional benefit from it. But again, this tool did not seem to account for the HER2 factor. And now its the holiday weekend so I cant ask him again until Tuesday. Can anyone shed any light on this for me? Are any of you HER2 and what was your experience with this, and with TCH as well.
2. The next thing that is conflicting me. He also said something I did not expect, but when I started to research this online, got just the opposite information. I talked about hair loss. And he said, well with this cocktail, TCH, hair loss is not 100% guaranty, that only about half the people lose all hair, but many just get thinning. OK, that sounded good, but again when I looked into this, I found LOTS of posts and other information, that scared me even further. I could not find a single thing that corroborated his info, yet I did see stuff about the Taxotere, the T in TCH, causing not only hair loss, but PERMANENT hair loss, UGHHHH. Freaked me. So, my second thing Id ask you very smart people, what do you know, or have experienced with that.
Other than all this and all my fears, Im probably going to go for it, and went and had my last haircut, got it cut way shorter than I normally do, and it looks like crap, but from what others have shared, its easier to lose it short, than longer.
I have an echo cardiogram scheduled for the week after next, then a consult with the surgeon, then the port, then probably start chemo mid January.
Thanks to anyone who reads and offers any insigh here, sorry Im so long winded..