Now DCIS - may have had it for 12 years!

[dawny]

Hi all
I found a new lymph node lump a few months ago, watched and waited for a while, decided to get it out, so I had a Node dissection with only 1/11 nodes affected, which is great (!) and only a couple of days before surgery the BS found another lump in the same breast, so she took that too, as well as the area my primary lump was. This came back as DCIS. So now I have to decide what to do about that. My BS is on holidays , so yesterday i went to another BS just to check everything was healing ok. He came into the room and said "I haven't seen you for 12 years" I was wracking my brain, thinking "have I met you before?" and then I remembered that when I was pregnant with my first child, I had some bleeding from the nipple. I was sent this BS, he had a look and did some reading, and said that it was a rare thing, but sometimes just happens during pregnancy. He didnt do a mammo or anything else. That was the end of that, no more symptoms, new baby, life was good. Now he thinks maybe I had DCIS back 12 years ago, and it developed into stage 1V invasive cancer last year. He can't be sure of that, of course, but talked about writing a paper, so other BS can keep an eye out for it. Now I am beating myself up over it, why didn't I go back after having my son to get it checked out again?. Obviously I wasn't thinking about cancer back then. Anyway, now I have to decide what to do next, if it has been there that long and already turned invasive, shall i just have a mastectomy? I now wish I had that last week, I am still recovering from that surgers, I don't like the thought of going straight back in! I am such a wimp, I hated all the drainage tubes, and blood! My other option is to wait and have a mastectomy if it goes astray again.

Any suggestions?

Thank you for listening to me go on and on!

Dawn

[LeahM]

Hi Dawn,

I can't help you to decide what to do next, it's such a personal experience, but I can tell you this:

The literature I rec'd about breast cancer said that it takes 9 years for 100 billion cells to reach a 1cm size, and another 2 years for that tumor to be palpable to the touch. My tumor was .8x.3cm and was not palpable.

Please don't beat yourself up with the "what if's" from 12 years ago. Now is the time to just move forward and plan your attack. Nothing you can do about the past.

I wish you all the best
Leah

[Jackie07]

When I was first diagnosed in 2003, also at 43 years old, my tumor was 1.2 cm with a super fast mitotic rate. The surgeon estimated the tumor had been growing for 2 1/2 years (coincided with the time when I was being 'poisoned' at work.)

Sounded like that doctor might be saying that the stage IV you've been through had originated 12 years ago. Be sure to get a copy of his writing when it's published. It may help you understand more about the course of your treatment.

DCIS is the precursor of invasive cancer. Your doctor might need to choose something different as the previous treatment had not been able to prevent it from forming.

Current understanding of angiogenesis - that more blood vessels will form when there's damage to the tissues/blood vessels - makes doctors think twice before suggesting surgeries for stage IV patients. You might want to seek a 2nd, 3rd opinion if you are not comfortable with your doctor's advice.

[Mandamoo]

Oh Dawny - don't blame yourself - we can't undo the past.
I can't see much reason for surgery. I had a mastectomy thinking I was stage 2b but in the wait for chemo after surgery and node dissection I metastasized. I look back at my mastectomy and see it as a complete waste of time and mourn my breast even more though it was the right decision at the time. We were not to know what was going to happen. I would get a few opinions but I would think as you are on treatment all the time there wouldn't be any advantage to surgery and I would be concerned about what is floating around while recovering from surgery and as Jackie says also how many blood vessels are forming while recovering.

[dawny]

Thanks LeahH. Jackie and Amanda. I thought that I would not have surgery for Stage 1V, but I got to thinking that if I could remove that one axillay node, maybe I could get back to NED. I also wondered about the effect surgery would have, but I have already had surgery now on the axillary nodes. Just need to decide on the DCIS, mx, or watch and wait.

Thanks ladies!

Dawn