Jun 24, 2008 10:06PM Gitane wrote:

I wrote you this humungous post explaining a bunch of stuff about my blood tests, then lost it.  Probably just as well as I talk too much.  Short and sweet......I have blood tests to monitor my health and the CA 15-3 tumor marker test every 3 months to watch for recurrence.  I told the onc I don't want to know the results unless he feels it would be of benefit to me, and that's the way we do it.  I don't have any scans.

I think you are wise to find an oncologist who communicates well and who inspires conficence.  There's nothing more important to a cancer patient.  Keep in touch!  We ILC ladies are few and far between and need company, 

Jun 25, 2008 09:02AM wishiwere wrote:

Geepers!  They are all so different!  You onco actually touches you?  :D  Kidding, but....the only time my has touched me, is to shake hands when he enters, to listen to my heart and lungs and that's IT!  NOTHING MORE!  He's never even seen my mast site, which I thought was wierd.  Then again he's never mentioned what to watch for in signs of recurrence, or anything since. 

He does have blood draws for Comp and metabolics and the CA27-29.  My understanding is that those markers aren't consistently something they can watch.  Many don't change with a recurrence, so I'm not sold on them.  The comp and metab, are to watch for as you say, signs or damage also, from the chemo too.  I'm ready to stop this 3 month thing, and I'm also ready to switch onco's to someone who 'deals' with BC, as this one stated under his breath at my last visit that he doesn't 'normally deal with BC pts!'! UGH!  No wonder I've felt inadequately cared for! :(

I have heard that Ovarian Can test are very good at indicating recurrence for that though.

Jun 25, 2008 10:57AM melmedic06 wrote:

Jun 25, 2008 09:06PM SammieKay wrote:

Hi fellow "lobs",

This is the first time I have posted here.  I was diagnosed in Nov.06.  I finished chemo last July  07.  I opted out of radiation as I had bilateral mastectomies and there was no breast cancer cells in any of the tissue removed.  Couldn't see what good radiation would do.  I have an oncologist at MD Anderson in Houston and one here in Victoria,TX.  The onc at MD ordered my chemo and the onc here in town administered it.

The onc. at MD told me he didn't do any post testing because it "would just drive me crazy".  He said they show a lot of false positives and you go through a lot of biopsies and tests that are unnecessary.  He also told me if I had a recurrence, I was incurable and would be on aromatase inhibitors.  I take Arimidex everyday.  I am 68, post menopausal and feeling great.  The Arimidex side effects seem to have lessened.  I have been on it for 10 months.

I was originally diagnosed with ductal and said to be small, not requiring chemo or radiation.  Just Arimidex.  But after the lumpectomy, the diagnosis was changed to lobular, 4.5cm with a microscopic drop of the dye in the sentinal node.  Actually there were 2 microscopic bits in one sn and one in another.  The doc at MD said they don't call that positive, but they don't call it negative either.  He said they didn't really know what it means.  So, being on the border for needing chemo due to the size, I opted to take chemo.  I wasn't too well informed at that time and didn't know that the chemo really doesn't do much for lobular bc.  Oh well, I felt like I was doing something.  I was, poisoning my body.LOL 

My mom died from ovarian cancer.  She lived 7 years past her diagnosis.  Pretty amazing.  Many of those were good quality.  The CA-125 is quite accurate to diagnose ovarian cancer.  My understanding is there isn't such a marker for breast cancer,  If someone knows of a good one let me know.  I will certainly ask for it.

I lost a 37 y/o niece to breast cancer in Jan.  She was diagnosed at age 32.  She had 3 young children.  She fought it with any and every clinical trial MD Anderson had to offer her.  She wanted to live until her children were older.  She saw one graduate from High School and one a senior and  the other one a sophmore.  Bless her heart.

I see the onc every 6 months.  He doesn't draw blood.  I do see my Internist every 3 months for blood work because I am on a statin.  She checks all my things that need to be checked for bc, so I feel good about that.

I am going through reconstruction, but it is not that great.  My breasts were D and now the implants don't have very good projection.  One is better than the other.  I have Mentor "gummy bears".  He also got one nipple to far toward my armpit.  The other is in a good place, but that is the implant that looks much smaller than the other.  I am scheduled for a revision in Sept.  He is going to change out the "flat" implant for a larger one.  They just don't look like real breasts to me.  I am resigned to the fact that man cannot make what God makes.  I was not a candidate for a tramflap and I just didn't want to go through a long operation for a latismus flap or a DIEP.  So I opted for expanders followed by implants. I am thinking maybe I have too much skin left from the mastecomies and that allows the implants to "ooze" out and flatten out.  They aren't very pretty.  But, I am glad to be alive and I am really feeling good these days.  So, Hallelujah and Praise the Lord.

Well, I think I covered everything, even though I think I jumped around  a lot.. 

I am glad to find this thread and will keep in touch.  I loved reading posts from the longtime survivors.  That is always encouraging.

Hugs to all, Sammie Kay

Jun 26, 2008 09:37AM GayleB wrote:

SammieKay, thanks for the info.  I, too, am on a statin, along with zetia and colestid to control cholesterol.  That is why I have the labwork every 4 months and want to consolidate these tests.  I am sorry about your difficulties with the recon.  But, I do hope they can get things right soon.  I didn't do the chemo, and I didn't know it wouldn't help much with lobular, which is what I had.  I just believed that the risks far outweighed the benefits.  The Armidex is all for now.  Love the flying pigs--really cute.  Take care and stay in touch.