No more visits to Onc- is this right?

[emmastarr]

Hi ladies,
Well, I had a quick 5 minute appointment with my Onc today (he was very behind with his appointments!) and he told me that he doesn't need to see me anymore!! I am quite shocked about it actually...I know this is good news but I thought I would be followed by him for the full 5 years? He just said that I would have a yearly visit to the breat nurse/surgeon until I get to the five year mark. I was diagnosed just over 2 1/2 years ago, anybody else had this experience?
Thanks,
Emma

['lizbeth]

Hi Emma,

My oncologist's plan was to follow me for 5 years. I thought that I would have a annual visit with my oncologist for the rest of my life. So I was quite dismayed to find our plans don't match. If I don't have a problem in the next 2-3 years I might feel more comfortable being followed by my Primary Care doctor.

I was Stage IIb with lymph node involvement and ER-/PR-. I see you are Stage 1. And from England. I really don't know the standard of care in your country, but one of my friends did her follow up with the breast surgeon instead of the oncologist. At our support group meeting we talked about how every place does follow up differently.

[Jaimieh]

I think you maybe in the market for a new oncologist.

Our standard here in most of the US is too follow the patient for at least 5 years.

[caya]

My oncologist followed me until I finished Femara, which was basically 5 years after chemo started. My breast surgeon discharged me after 3 years.

I believe this is the standard of care in Ontario, Canada. Because I am in Toronto and had my mastectomy at Princess Margaret Hospital (Canada's major cancer hospital), I was offered an annual follow-up at a Post Breast Cancer Clinic at Women's College Hospital, and I agreed to that. My GP examines me as well at my annual physical.

I don't know what the standard of care is in England, but I see you are ER+ and on Tamoxifen - are you going to be on Tamoxifen and/or Femara (or another AI) for a total of 5 years? If so, I would ask around...

all the best
caya

[Bunty]

I'm surprised Emmastarr about your onc's position. I imagine you are probably NHS in the UK - I'm a public patient here in Australia and after I finished my initial treatment visited with my onc every 3 months for a couple of years, and then every six months (until I was diagnosed Stage IV). So in totatl that was for about seven years before Stage IV. Of course I see him all the time now!

Best wishes
Marie

[SoCalGal]

NO, it is NOT right! I think you already know the answer, and if your doc won't see you, or is running so late that he can only spare 5 minutes, then perhaps you need another doc who "sees" patients as people. Unless it is an extreme financial hardship, I would be seen every 3 months for the first year, then every 4 months for several and many, many, many years...(and many, many more)! To stop by for a blood test and physical exam is the best way to stay on top of your own health. Even with the assumption that you are cured, which is as good as any assumption to go by, and a great way to live your life, but even so --- in my opinion, it would be risky and foolish to go un-followed.

I have been seen by a doc every three months for the last 16 years. For MANY years, it was ho-hum routine, see ya next time visits. But when my markers jumped, it was good to catch things EARLY.

Best of luck to you!!

[Andrea Barnett Budin]

I thoroughly agree with Dr. Flori! I saw my onc ev 3 mnths and finally graduated to ev 6 mnths. STILL -- I had comprehensive bld work done ev 3 mnths until, practically forever! That is how I (yes "I") caught my metastasis. My liver enzymes were slightly elevated. Nothing to worry about, my oncs said. 3 mnths later, same dialogue. What could be causing that? Could be from anything, from the statin you take for example. I wouldn't worry about it, I was told, it was very, very slightly elevated. 3 mnths later -- same scene.

I asked for a sono. Which they decided could be substantiated (to the insur co). Which led to the CT, which led to the biopsy. Tumors throughout my liver. Yes, I felt fine. No symptoms but for my very very slightly elevated liver enzymes. Red flag!

We need to live our lives joyfully and with positivity, but it just makes sense to keep an eye out...

Plus, you need to feel free to actually have a conversation with your docs, to feel they are listening, hearing you, responding with thoughtfulness. When you feel rushed, things slide and little things get missed. Oncology is about details, as I see it. Heck, Life is about the details!

Andi

[Mary Jo]

My onc. followed me for 5 years also. Actually, I saw him about 6 months prior to my 5 year mark and he gave me the choice. I could continue to see him once a year (if that would make me more comfortable) or I could see a doctor where I live, that I trusted. I opted for the latter of the 2 options. I definitely would NOT have felt comfortable at 2 1/2 years out being told I was finished with my oncs care.

[suzan w]

5 years for me...and she told me I can schedule an appointment whenever I feel the need!!! I thought I would be beating down her door...but I have gone 2 years without a "fix"!!! I do, however have my reg GP do the tumor markers etc.

[emmastarr]

Thanks for all your replies, am still shocked that the Oncologist has cut me loose! I will speak to my breast care nurse when she gets back from annual leave to see what she thinks. If my current Oncologist says that I am done, then I will look around perhaps for another one, as you suggested. I will probably need to go private for that as opposed to the NHS. I will be on tamoxifen until 2015 so assumed I would carry on seeing the Onc until that point. Emma x

[tricia keegan]

I still see my Onc seven years out plus the breastcare nurse and Jr Dr every year too!