Hi Mole, can i just ask how your oncologist reacted to your only going as and when? i think what you have done sounds like a good idea to me, i really don't fancy sitting for 2 hours to be seen for about 4 minutes every time that i go, did they try to talk you into going on a regular basis?
I have just finished Heceptin and am being seen 3 monthly at present. I will be 2 years post diagnosis in July 08 so if all is well I don't know if it will be 3 monthly or 6 monthly there after. I sure you have been given the wrong info, follow up for five years is the norm, so ask.
I discharged myself immediately after radiotherapy ended and have been back about three times since for specific reasons e.g. back pain. I don't like hanging around in hospitals I think they are dangerous places full of cross infections and I have been told that follow up has no impact on mortality so wasn't going to spend time having it. I've also not had a mammogram since 2003 as the ones I had that year didn't pick up anything although I already had detected a lump;.
I decided after the first lot of cancer treatment that if it came back I'm not going through any of that again so I'm not looking for anything. Luckily I don't have any children or relatives I want to stay around for so a short life but a merry one is the order of the day. I feel mutilated anyway so I don't care if I die young. I'll probably live to 100 though as I had low grade cancer
I was seen every 3 months for 1st year and am now on 6 monthly appts which according to my treatment diary stop 5 years after dx - which is August this year! I'm due to go in March and I presume I'll have my last appt in Sept. I'll then have mammo's at 6, 8 and 10 years and then hopefully discharged!
Ever since I finished my radiotherapy I have only ever been seen once a year - one year by the oncologist, the next year by the breast surgeon. I just saw my oncologist this month and he has discharged me completely, even though I am still taking arimidex and it is less than 5 years since my diagnosis. It does seem to vary greatly presumably depending on area, but perhaps also on peoples' circumstances?
I know that some hospitals are reviewing their follow up checks of patients and it does seem to vary even patient to patient.
I'm on 3 weekly check ups and have been for over a year but before that it was 3 monthly and before that it was yearly. Years ago I used to be on 3 monthly to start with, then going to 6 monthly and then a year and then, once you got to your five years, you were discharged (unless, like me, you stayed in the system because of the high risk) but that doesn't seem to be the norm now for everyone.
I just saw my onc this afternoon after my 4th herceptin. She told me she would be seeing me every 3 months during herceptin. After the treatment is finished I will see her once a year and my surgeon once a year i.e. I will be checked every 6 months
I had a lumpectomy (Grade 1) Aug 06 and finished rads Dec. Saw the oncologist last week and will see him again next January.
Due to see consultant in March and have a mammogram in September.
Do you normally see the consultant only once or is that likely to be annually too ? Wish I had asked about this last week!
I finished chemo July 06 and herceptin june 07, I see my Onc every 6 months (should be quarterly) but we have an agreement any concerns then I get straight on the phone for appt or pop into clinic, I was also being referred to plastic surgeon for recon and we figured I would have enough prodding and poking by his team + breast surgeon once a year and annual mammo.
I didn't have Herceptin, but when my treatments had finished I had a checkup in the November following finishing radio' in Aug., A mammogram in Jan., Onc., in May and Surgeon in Nov.,......and so its continued.....I also have a fantastic BCN who will check me inbetween apts., if I want her to.
Make sure you fight your corner.
I finished treatment a year ago and have 3 monthly checkups and I didn't have to insist on this, although I would have done so! I am high risk for spread/recurrence but I'd have thought you should have 6 monthly checkups for at least a year or two - fight your corner, you need peace of mind and it only takes them 15 minutes to check you over.
Give 'em stick.
Can anyone tell me what the situation is with oncology appointments post treatment? I finish Herceptin first week in April and have one last MUGA scan followed by an oncology appointment at the end of April. I've been told there will be no more oncology checks after that unless the cancer comes back and I'm referred back to them.
However the nurse who came to do my Herceptin today said she didn't think this was right. She's done chemo etc for years and says most hospitals she's worked in follow you up for a while. I assume it varies from place to place, but I'd like to know what others have been told.