dumb question: am I considered "high risk"?

I think anyone who has had breast cancer or any cancer for that matter would be considered "high risk". I have a problem with people categorizing their breast cancer as " the good type or " bad type" ??? What does that mean?

 I was told, and I have read that the first 2-3 years after treatment are the most critical. After that, risk goes down. I have also just finished treatment and have had my port out. I'm a little uneasy because I finished all major treatment but am still continuing with Tamoxifen ect. I know where you are coming from. I have my 3 month check up in the New Year and if my onc ordered some scans / tests I personally would be ok with it. If it is causing you anxiety right now, don't do them. Maybe in a couple of months you will be ok with the idea. Talk with your onc about your worries.

. There we go..grade 3 = high risk. lol.

I don't think you hate your Onc, I think you are not happy that you can't move on with life without having to worry about more cancer.

Do you not have a "medical" oncologist? The Oncologist that I see isn't a surgeon. He's a straight-up Oncologist. Perhaps you'd be happier with a cancer doctor who didn't split his time amonst areas.

Anyway - you are probably considered "high-risk" because you were her+. and er -.

You should remember that you have the option to tell your doctor "no thanks" to continued testing. There is one train of thought that suggests that scans and tests to detect reoccurance before any noticable sympthoms occur doesn't really change any ones's chances -- and it causes a lot of anxiety.

If you don't want scans/tests say you'd rather not. Whatever helps you to move on and live your life like this never happened.

Hey Mary Jo,

My oncologist told me that I was at the highest risk for recurrence the first 3 -12 months after finishing herceptin (anything the herceptin was only keeping in check and not destroying would start to develop as the herceptin levels dropped down to nothing in the body).  That is why she sent me in for the "baseline" CT/PET scan 3 months after finishing herceptin (mentioned on the other thread).

So, while HER2 + made us "high risk" before treatment (thank god for chemo and herceptin), you were dropped down into a lower risk category as soon as you opted for the treatment.  A second oncologist I used in Maryland (so I could get my herceptin when visiting my daughter) excitedly got out his charts and tables to show me that while Her2 + is very high risk at diagnosis, the chemo and herceptin dropped us down into the low risk of recurrence category when we finished treatment. 

However, you are currently at your highest risk for recurrence over the next year even though you are now in a lower risk group (does that make sense?)

 I understand the crashing.  I have been sailing along but now find myself getting nervous about my next 3 month check up in January.  A few more weeks and I will be breaking out the sleeping pills untill I get my results.

Mary Jo

sherryw,

I feel the exact same way about scans / tests as you do. And bluewillow, I too find it very hard not to be able to move forward so fast. It is getting easier though, I'm better than I was last week and so forth. My family's attitude is " you WERE sick and now your not, move on" HUH?!!  And then of course it's running into people and having to insure them that " I'm fine" and everything has been dealt with.

Last month, like I mentioned, I finished with my Herceptin treatments. The following week I was a wreck. Even though happy to have finished and have that port out, I was not sleeping and crying through out the day. I decided to go see my second oncologist. I use him as my second opinion. I like my onc a lot but I feel better when I have two views.

Just like sassa's second oncologist, mine said the same thing about the Herceptin. He said BEFORE Herceptin Her 2 disease was " bad". He jestured with his hand a low level. But NOW with Herceptin it has completely rotated. Her 2 disease is now the more favorable prognosis. He also said, that since he has been giving Herceptin treatment he has seen very very few women with recurrences! * Remember that ! * He then smiled and said Merry Christmas.

bluewillow, it took several months for me to understand why I was regarded as high risk. DCIS, no big deal, right? But I had a 1.9 cm DCIS, comedo type with necrosis, with 1 mm margins & other areas of interest because of microcalcification & hyperplasia. My oncologist's strongest recommendation was a bilateral mastectomy with SNB. At first I regarded this as total overkill. A bilat for DCIS? 

But breast cancer isn't treated in isolation. It occurs in a patient. I have mild systemic lupus, and a few years ago in my 50s I had had a heart attack. Each is a risk factor for chemo. Together, they make both the more potent chemos & Herceptin risky--and probably off-limits. My case went to the tumor board, which was not able to agree on a course of treatment.

While our situations aren't the same, we share these three markers of more aggressive tumors:

1. nuclear grade 3

2. HER2+ 

3. ER-/PR-

According to my oncologist, patients with those markers who do experience an invasive recurrence (but many, many will not!) are somewhat more at risk for progression because there aren't as many treatment options. Therefore he strongly encourages hitting those tumors early and hard with whatever options are appropriate to the patient's situation. Herceptin is indeed great targeted therapy--but unfortunately for me, they won't use it if I develop an invasive recurrence. I regard myself as fortunate that my oncologist was plain-spoken and told me that in advance; I agreed to the bilateral mastectomy to minimize my risk, which he says is now in 1-2% range.

You've done minimized risk with your treatment and so have I, though that treatment has taken different paths. Beesie and everyone else who's suggested talking to your oncologist is spot on. I've found it helpful to have a written list of issues/questions. The numbers that matter most are the ones that apply to you. I hope they are very good indeed.

I hear your anxiety about the tests. There is generally a range in terms of recommendations for how often they "should" be done. Myself, I think of additional testing as a burglar alarm--and I sure want to know if an "outsider" has gotten into the house!  But again, talk with your MDs and negotiate. Standards of practice aren't written in stone.