I have posted this for new user, Amanda
Jo, Facilitator
I finished treatment in Feb, dx May2007, (chemo, Mastectomy, rads, tamoxifen)
I saw the oncologist the day of my last rad. have not heard a word since. I was called to the breast clinic 2 weeks ago, the surgeon looked at my scar, felt under my arms and said come back in 4 months. My GP sent me for a blood test a month or so ago, & my white blood cell count was down, so they have redone it,I await reslults the surgeon didnt bother about this at all. What is other peoples experiecne , is it standrd practise not to see the oncologist, no scans, blood test, no chance to discuss Tamoxifen side effects etc, or am I being paranoid and shloud just be glad not to need this follow up stuff?
PS been off line for a while, computer troubles! Nice to be back in good company
Amanda
I see the oncologist every 3 months and the surgeon every year,Blood tests every 3 months results by letter and through GP.Mammo annually.Think its because I am tiple neg.
Hi amanda.I had lumpectomy in january 2008 and rads in april.I saw the oncologist in jun and have already had the dates through to see my surgeon in february 2009(after annual mammo,to get results) and my oncologist in september 2009.Maybe you could contact your breastcare nurse to see if this is the norm at your hospital?I dont think i would be happy to not be seen for that long but then i am a bit of a worrier!! gill x
I have just finished chemo and about to start rads, however I have already beed told that I will see Onc then surgeon alternately every 3 months, I agree I would check to see what happens in your area, there is always the chance your appts have slepped throught the net, it does happen!!!
Hi Amanda,
I seem to be having the same follow ups as Linda.
Had a mastectomy in Dec then rads finished mid feb.
Saw the onc in May and have an appointment to see the surgeon in Aug and onc in Nov.
Have been told that the surgeon will arrange for scan to take place next Jan/Feb - a year after the end of treatment.
It would be a good idea to speak to someone to check what your follow up plan should be.
M
I was diagnosis almost two years ago. Lumpectomy, chemo, rads and Heceptin and I still get seen every three months as do all the people I have met where I am being treated. I think you do need to get back to them.
I finished treatment in August 2005. Saw my oncologist in October and was told i would not see him again and would only see breast surgeon every 6 months and have annual mammograms. No scans, blood tests or anything. When I saw him last August, I was told i could go down to annual exams and mammograms every 18 months. I am not happy with this as i was diagnosed without symptoms with grade 3 6/14 positive nodes and lymphovascular invasion.
I was dx December WLE/SNB Jan rads Feb/march back to work April. I seem to be seen every 8 weeksor so alternatively by the surgery team and oncologist. I have a breast exam and they ask me about my zoladex injections and tamoxifen, no blood tests for me either and been told first mammogram will be in January around the 1 year anniversary of surgery. Just had another appointment with the surgury team and my next is with the oncologist in September with another surgery one in October. I’m not sure why I have so many appointments but I think it depends which hospital you are at.
Good luck with everything. Shonagh x
Thanks for all your comments, I will hav a chat withmy breast care nurse & see what she says, I didnt want to be making a fuss but it does sound like lots of you are being offered much more after care.A follow up plan sounds like a good idea Kelley i wolud not be happy either, praps you should make a fuss too!!!
All the best ladies
Amanda xx
DX Jan 08 - WLE and node sampling then tam mid feb and rads mid March to end of April.
Saw surgeon a week after surgery and again 6 weeks later - already have appointment booked for him in Sept.
Saw onc 10 days after surgery then again 2 weeks later to confirm treatment plan - they were awaiting HER2 results and also as I was awkward (I’m known for it) the MDT had to discuss my node status (no lymph nodes affected but an intermammory one contained cancer cells)
Saw onc registrar about 5 weeks after rads finished - had the obligatory prod and poke to boob and armpit then moved on to discussion about tamoxifen. Am still being awkward as tamoxifen and mirena coil together have not stopped periods so they put me on monthly visits to monitor my ‘active’ ovaries - if they are not ‘inacitve’ by August they will chuck in a monthly injection to shut them down. No bloods taken at this appointment - in fact only blood test I’ve had since DX was the pre-op one. No scans ordered by oncology or surgeon either. Have been told that if my ovaries start playing the game properly I will be moved to 3 monthly onc visits initially and mammo a year after my surgery then annually thereafter for 10 years by which time I will be 50 and into the screening program anyways.
Had a bone scan booked for today - this was ordered by my GP as I had mentioned back ache.
Given my follow-up and that of the others on here I would seriously question your lack of appointments. Get onto them and ask why you are not being seen regularly.
Kelley - my dx was similar to yours - I was given an appt every 6 months - alternating between surgeon and onc, plus an annual mammogram. It doesn’t seems as tho’ scans are part of a standard folllow-up - or does anyone have a different experience?
I still see my oncologist every 6mths but my 6mthly appointments with surgeon changed to yearly+mammo after second year and will stay that way for 8yrs.Appointments with onc will stop after 5years.Usually don’t have a scan or any further tests unless you present symptoms which need investigated! I’m triple neg.