5 year survivor f/u care?

Hello and welcome, though I

Hello and welcome, though I wish we didn't have to meet here!  I just turned five years in October and have wondered the same thing.  I had a bilateral mastectomy in 98, having been diagnosed with 3A ductal and lobular.  I did have a chest xray at my last visit in October and my Arimidex RX has been extended for another five years. Concerningly,  I was told I no longer need lab work for my next followup visit in April.  As do you, I feel that my care is standard, not necessarily the best. It will be interesting to compare our experience with others. xoxoxo Lynn

Welcome

Welcome.You will learn alot.

I was dx 4 1/2 years ago with non invasive DCIS.Clear margins.Tumor was 1/2 centimeter.For 3 years I went to the doctor every 6 months.Probably after 3 1/2 years it became annual for Mammos but i still see my oncologist every 6 months.I will hit the 5 year mark Aug 2014.

Seems after I had my dx I had a injury or sickness.Then of couree X ray.I read so much about all that radiation it   worried me.Felt the doctors weren't thinking of my health.To much radiation IMO for a cancer survivor. I don't get a chest X ray annually.The only reason I got 2 recently(within the last year) Was I had bronchitis that lasted months.I wasn't happy about the lung X rays.A worry of lung cancer.Just recenlty I put off another X ray.I thought I had a hip fracture BUT I'm sure I would'nt be able to walk.Had also been to the doctor and was probed.Still hurt so called the office.They told me likely it was a cracked tailbone.I agreed since I could at least walk.All of the put offs getting a X ray is because of the radiaiton.I go on line and read how much radiation is with the X rays we get ordered. To much.

Situation that happened with one of my X rays. A doctor ordered one in ER for my leg. The tech comes in to do it. Just as she started  I said"I am a cancer survivor I hate X rays. Suddenly she put the guard on to protect me but she had no intentions of doing this till I said something.I had no idea she had the guard  with her but she did and wasn't going to use it for my protection.  What patient care!!!!! Also The doctor who ordered the X ray was told I had BC,He should tell the tech to protect me.  

My question is Would all these tests be ordered by the doctors if it was their family.??? I'm in no  pain anywhere since and don't needs X rays.My annual mammo is coming up in january.Also my oncologist appt.Then I will feel better for the next 6 months to a year till my next mammo and oncoligist visit.

With my dx I didn't need radiation or cheMO.But got plenty anyway. Taking a break from it all.If you aren't having any chest discomfort and problems I wouldn't want a chest X ray. I went online once to check how much radiation in differnet X rays. The radiation dose varies with each. Within 3 years of my surgery and dx I had 8 X rays not countinng dental etc.  ENOUGH

Lynn Smith

My gist on what care we should be getting after 5 years.

I am 7 years out and I see my onc every 6 months.  When I was 9 years out I saw him every 6 months.  I asked him about the golden 5 year mark and he said "You can never say women are cured of the disease",  He said "after 10 years the ratio or a recurrence is on the edge of about 1 to 2 percent risk".  

I asked him what does the 5 year mark mean, some folks think it means they are okay...I do not, how do you view it....he said..."5 years got engrained because it is a stat reporting point for cancers, National reporting...they report at 5 years, 10 years, 15 years intervals...that is how they keep the stats.  With bc the main risk is about a 10 year risk factor beyond which is about a 1 to 2 percent risk.  Colon cancer is about 5 years,rectal is about 7, different cancers have different times to them based on their behavior."  

He then reiterated that " with bc because of the fact you can never say a woman is cured no matter how many years it is you never stop the follow ups you keep on top of things.  You can get relaxed but you keep on top of it!"

So what I got from my conversation with him is that it is vitally important to keep on top of our health in ref. to bc and that we should be seen and have regular test done, blood work markers, sed rate etc and should something seem odd then perhaps the old Pet scan.  Hope this helps.

My onco runs my blood markers every visit, he does not do any x-ray's unless there is a possible problem, for instance I had a recurring cough and he did one for that otherwise no x-rays.