please stop minimizing my diagnosis

I recently went to my dentist for a tooth cleaning. It was on Feb 10th...my surgery was Feb 12th. I toyed with the idea of telling my dentist about my upcoming surgery (we knew a lot of people in common socially; my husband is a retired oral surgeon). I decided, mostly out of whimsey, to tell her about the upcoming surgery. She told me that she would eliminate two steps in the cleaning process (what I call thee "sandblasting finale) She felt it might tax my body unnecessarily before the surgery.



I realized how important it is for each of us to present the whole picture of our health issues whenever we see a health practitioner. I don't think I would get much sympathy from my docs if I were to complain about tooth sensitivity immediately after my PBM and reconstruction procedure.

femme

Amen Sister!  Very well written!!!!

mittmott,

No, I don't see my oncologist any more.  I had a first appointment right after my surgery.  During that appointment the oncologist explained my recurrence risk (about 1%) and my risk to get a new breast cancer in my remaining breast (about 20% - 22%).  We discussed Tamoxifen but he recommended against.  I said I'd think about it.  When I came back for my 2nd appointment, I told him that I agreed re no Tamoxifen.  There wasn't much more to talk about after that.  Although he was going to schedule a 6 month follow-up, I asked whether it was really necessary and he agreed that it wasn't.  So we left it that I can call to set up appointment any time I feel necessary (for example, should I change my mind about Tamoxifen) but we won't continue with any regular schedule of appointments.  That was 2 years ago, and I haven't seen the need to see him since. 

I think you know your body better than anyone.  It's unfortunate but you have to be your own advocate.  You cannot depend on anyone else to make decisions for you - no matter how many letters come after their name.  It's frustrating and the research is time consuming but I think we can all agree that in the end it is time well spent.  This is a great place for us all to learn and share.  Keep up the fight!

As far as minimizing my diagnosis go - I had someone say to me that there are people muchj worse off than I am.  Well of course there are.  If I'm lying in a bed with a broken leg and the person next to me has 2 broken legs, they are worse off than I am, but my leg is still broken!

I'm glad there was some discussion regarding an oncologist.  After my mast when path showed no microinvasion or node involvement, my bs felt there was no need for me to see an oncologist as he felt my cancer was essentially gone (for now).  He felt i should be on tamoxifen but said he would follow me. My primary docotr does blood work and I see the gyn every six months.  Am I missing out on something by not seeing an oncologist.???

mich mom...I meant to say "blood work"

Hi I am Yvonne, I just wanted to let you know I am glad you are taking serious DCIS, I was diagnosed with low grade all less that 1cm in 2004, had mastectomy, no lymphnode involvement, was told I wouldn't need chemo, then because they found out I was her2 they suggested chemo as a preventative of reaccurence, well I did chemo and I was very ill, only got through 2 cycles instead of three as I chose the shorter route. I was told I was cured and go home have a long life, I was diagnosed with mets in Sept 2007, so your right don't be fooled by low grade DCIS, as it is not always the case it doesn't come back, most of the mets site are full of women who started out with DCIS. So make sure you get what you need and push for the right treatment...Yvonne

louishenry, this is what they tell us.  I had a tiny microinvasion also, and I'm on nothing.  I was also basically told, go home, have a good life, after my first bout, small invasive, and again now, dcis, with this micro.  Well, I'm  not going home to have a good life, and forget about it all.  My body made cancer twice,and bilateral or not, I'm not going to sit back.  I am seeing another onc for another opinion, and will hopefully continue to see them at least once a year , just for good measure. The onc in the huge cancer hospital doesn't feel she ever needs to see me again.

I had lcis 8 years ago. I had another lump a year later (benign).  They started me on tamox, said i was high risk.  After a full year on the tamox, I developed a small invasive cancer in the same breast as the previous lcis, and benign lump.  I had a lump. and rads.  Onc, took me off tamox.  said she felt it worked the opposite on me, and might have caused my cancer.    She said a tiny cancer like my first one, should not have broken through while still on tamox.   Fast forward 6 years later, and I just had a bilateral mast.  Found a new cancer in my same left breast, this time dcis, and a small microinvasion.  clear nodes. 

It helps me to remember that until we know otherwise DCIS IS cancer waiting for an opportunity to take hold and I took its opportunity away.

Was I ever going to get invasive cancer well it's clear to me that NO ONE has that answer yet.  There was so much confussion with every doc I saw even between breast surgeons.  And I trust the scientific evidence to a point - I like to know who funded the studies before I include it or toss it.  Very often the funding of these studies are by drug companies and I am very concerned that we are running low on good scientific studies, studies that have no bias (or at least as little as possible).

Oh and Mark, I am really glad to see you here as it's time to throw out the image of women and breast cancer and see it as a human  breast cancer.  My Dad was also included in some studies at UCLA - and his cancer was Stage 2 invasive ductal carcin. Because he lost his battle in 2001 - when I was given the news of DCIS in 2007 I let his life guide me and I did the best I could to take CANCER's opportunity away..

Best to all

Marian

Beth - Good point!  I also had to educate the doc's on the probability of BRCA gene being present in someone whos FATHER was the one with breast cancer.  Now in my case it was mute, my BRCA came back negative and still there was DCIS.. I have had a great deal of trouble trying to get other members of my family to take the test BECAUSE mine came back negative and they still found cancer.. so I think I have at least encouraged them to have breast MRI's..  My insurance company flat turned my bill down, and it took months to clear up, not only that but a PET scan to make sure that there wasn't any other sites in the body.  But BRCA is now done under MEDICARE if a male member of the family is diagnosed - my God when I showed them that they had to approve it becase normally Medicare is the last approver of any procedure! 

And for anyone other there that needs to know the cost it is approx. $4K (American) for just the BRCA 1/2 test!

Avasmom5.. I see the gyn every six months because of tamoxifen and risk of uterine cancer.  I'm not sure exactly how often i will have blood work but my last test showed elevated liver enzymes which the doctor is following.  I don't see an oncologist but MRI and mamos are recommended yearly.

Beth  I have a silly question.  If you had a double mast, which I thought included removal of the ducts and breast tissue how (where) did they find DCIS?

Michele

Well I too got 'if your'e going to get Breast Cancer DCIS is the one to get" !!  The biopsy indicated DCIS, but surprise surprise the pathology from the lumpectomy was IDC. Seems the little bastard cells had already broken free from the milk duct sometime between the biopsy and the surgery!  You can imagine my shock when I was referred to a Medical Oncologist and heard I had to have aggressive treatment including 8 rounds of chemo, followed by Radiation and a year's worth of Herceptin - 15 months of drug therapy!  The chemo just about killed me and they stopped it 3 sessions short of the full 8.  I had every side effect they said I would get, could get and may get!  I start Rads Oct 5 and continue with Herceptin until July 2010!

So don't underestimate little DCIS!  Things change as the full pathology reveals itself.

I too have DCIS, just had my lumpectomy and will have to start radiation. As I was waiting to have my surgery the anesthesiologist came in to talk to me and as she started to put info into the computer she commented that I didn't have breast cancer. Why? What was the purpose of this, it was more of a mumble to herself, she said it without looking at me. I wanted to ask her why I was having part of my breast removed and then having radiation treatments if it wasn't cancer, but I decided to just let it go, didn't want to go into surgery feeling any worse than I already did. I guess I was just kind of shocked at the callousness of her attitude, nice bedside manner.

I totally get where you all are coming from, and you have opened my eyes.

While I have invasive cancer, my husband keeps on saying we are so lucky because it's very early and tiny, only 1.4cm.

I have to have surgery, I have to have rads, and I may have to have chemo. If I decide to skip chemo, I may be gambling my future survival. And I have really pretty hair . When I talk about coming to terms with the fact that my life may be shorter, my friends say, you only have a "little" cancer. They have said "it's not serious".

So sorry you have to go through all this, having bc is isolating, and you guys get a double dose.

I do realize someone with stage 4 would give anything to trade places with me, that helps me find some balance.