Decisions, decisions

[CarolineC]

Hi everyone,
So….I have some decisions to make. I had my second opinion visits the week before last and a lot has happened. My husband and I travelled to the next largest cancer centre which is 3 ½ hours from home. I had a consultation with a radiation oncologist who suggested 20 treatments (I thought he would say 5) and a biopsy of my sternum. That was a Tues. Wed I had a CT scan to be mapped out for rads, Thurs I had a CT guided sternum biopsy and Fri. an appointment with the oncologist.Then I came home and had four business days to get ready to move to the city and by the time I got here I had a bad cold (the first one in almost two years) and felt like I was being punched in the sternum every time I sneezed as well as having some flexed ribs from the force so it’s very painful to lay back on the table for rads. Not a good time, that’s for sure. I have been very down; not a good way to start treatment.
This time around I feel like my body is stronger than the first time but my mind is having a hard time wrapping around the whole situation. Everything is switched from the first time ; I’m having anti-hormone therapy, rads, possibly chemo and Herceptin. Oh yeah, my biopsy showed I’m still ER+, PR+,HER2+. I couldn’t believe I was asking people to pray for one, that it was breast cancer (because there was a small chance it could have been another kind of cancer) and two, that it was HER2+. I believe that the original cancer either wasn’t taken care of by rads because it’s maybe only 2 inches from the original tumour, or that I was resistant to the Tamoxifen, couldn’t metabolize it, or it fuelled the HER2 as soon as I finished the Herceptin. I had read information about the CYP2D6 test to see if I could metabolize Tamoxifen and had asked to be tested last year but was told it wasn’t being done; now I notice Vancouver is having a clinical trial for it. I don’t know when the cancer spread because I had not had any scans and was only seeing the oncologist every 3 mths with bloodwork. I knew that tumour markers were not a diagnostic tool and my onc said he didn’t use them but I found out someone in my support group with the same kind and stage of cancer was having TM’s so I requested that I have them. In March my CEA was 2,(normal was 0-5) 15-3 was 6,(normal was 0-32) by May the CEA was 4 and the 15-3 was 7, not bad I thought. I questioned the doubling of the CEA and the onc said it was within the range of normal and he wasn’t worried. I said “if you’re not worried, then I’m not worried”. Now he’s looking at the markers because the CEA is 25 and the 15-3 is 40.
I had asked to have an extra year of Herceptin before I finished but was told it wasn’t protocol. Okay, I understand. I had asked for tumor markers and was told they didn’t go by them. I understand, in a way. When I asked for a bone scan the onc office never got back to me and by the time they did the nurse said the onc didn’t think I needed one (they thought I had costal condritis) so he wouldn’t put in a requisition. I said “that’s okay, my gp ordered one and I’m going tomorrow”. I’m so glad I persisted for the bone scan because now after having a CT with contrast the sternum seems to be the only place it is (well, I am having a head MRI tomorrow morn and I pray to God it will be okay).
I have talked with the oncologist over here before I had the biopsy and we discussed rads, possibly chemo and Herceptin, with no anti-hormone therapy . I said I would go through chemo again because even though it’s not showing anywhere else doesn’t mean it isn’t setting up shop. She suggested Docetaxel every 3 weeks for 6 cycles because it is a different agent than the Paclitaxel I had before. She was away for a week but hopefully I’ll be able to see her this week.
Do you have any suggestions? I don’t know anyone in my area who has gone through this and I want to make the right decisions. I know Herceptin is in my future; should I have the chemo as well? Is anyone on letrozole and a bone builder and Herceptin? When should I go on Herceptin? Now, while I’m having rads, or later? I feel uncomfortable that the HER2 is going unchecked. Unfortunately I had my port removed in May and now I’ll have to get it reinserted. I hate that my family is getting dragged through this again and I want to do as much as I can.
I do feel very blessed that my sister is coming from Ontario (I’m in British Columbia) to stay with me for 3 weeks and my other two sisters will join us for a weekend; we haven’t been together for 4 ½ years. I also have a great support network of friends and family that are so concerned about me. I hope I’m making sense; I’m very tired.
Caroline