second guessing decisions

pbgirl

Hi everyone.  I know no one can tell me what to do (wouldn't that be nice sometimes??)  but I need to just talk this out.  I have (had?) dcis grade 3 micropapillary and comedo type which from what I understand is terribly aggressive.  I had a lumpectomy without clear margins therefore a revision.  I am now really worried that I made the wrong choice.  I am afraid of the cancer returning and in an invasive form. I wonder if I will ever stop worrying about it.  There is no family history at all so this is still quite a shock (just diagnosed in January).  I keep reading about women on this forum who had mastectomies for dcis and then the pathology showed much more!  I'm frustrated and tired of all this...  ok, I think I'm done now...thanks so much ladies for listening (reading)

Blessings and good health to you all 

geebung

Hi pbgirl,

So sorry that you are going through this. I worried a lot in the months following my surgery even though I had a mastectomy. My DCIS was also very aggressive and the pathology from the lumpectomy showed that I had several microinvasions and the margins were not clear. So I had no choice but to have a mastectomy.

Did your surgeon get good, clear margins on the second surgery? That is the important thing. If the margins were clear it should all be fine. If it was pure DCIS with no microinvasion and the margins are clear, then there is really no physical need for further surgery. Are you having radiation? If so, that, with a lumpectomy, is equivalent to having a mastectomy.

On the other hand, many women seem to have mastectomies for peace of mind. If you are going to worry, it might be worth considering. However, I think some of us (I'm talking about my own experience here) cope well with the initial diagnosis, sail through surgery and then the shock hits us a few weeks afterwards and we begin to react to what has happened. I worried for a few months but it gradually faded. Four years later, all is well.

Have you discussed your concerns with your surgeon?

Be gentle with yourself. Your thoughts are normal. We are all different. Some of us prefer to get the least amount of surgery possible, others go ahead with double mastectomies. You have to do what feels right for you.

Hugs,

Jane

pbgirl

Thank-you Jane, well said.  Yes, my margin were clear on the second surgery and I will be having radiation.  I see my surgeon tomorrow and will bring up my concerns.  I would really like to talk to an oncologist to see what they think.  Will I be refered to one even if I'm not having chemo?  and do you know if I will see the oncologist prior to the radiology oncologist?  Navigating all this is sometimes confusing, and I work in health care lol!!

Thanks for calming me down a bit 

Anonymous

hi pbgirl,

re: will you be refered to an oncologist if you are not having chemo?

answer: you really have to see an oncologist nevertheless, just do not be pressured to make a decision on the same day, specially if your questions were not answered properly (by the onc)..

re: do we know if you will see the oncologist prior to the radiologist?

answer: normally you will see the oncologist first prior to the radiologist.. probably depending on their schedules.. you have some control in the sense that whoever you see first or later,, you need not be pressed for a decision..

if possible-- ask for an appointment wherein both the oncologist and radiologist can sit with you at the same time and discuss treatment plans with you..

bring a notebook and pen in hand (wherein you have written all your questions-- including all of your concerns)..

sweatyspice

As I understand it, an onc can only (a) prescribe Tamoxifen if you're hormone positive, and (b) discuss your situation, fears, recurrence risk, etc. (If yours was a case of "pure" DCIS, the only drug protocol currently approved is Tamox.)

Whether you see an onc or rad onc first is probably up to you, and their schedules. 

MamaMia41

Hi pbgirl,

I seem to find myself in a similar situation.  I have DCIS and have had a lumpectomy and a re-excision, still have one close margin (.5mm).  Radiation oncologist will not start rads becuse the margins are too close (wants 2mm+).  My surgeon wants to do another re-excision, based on the area (very low and traveling down) she does not want me to have a mastectomy.  I really don't know what to do, I just found all this out two days ago. Like you, I want to do whatever it takes to decrease the worrying, but it will probably always be there.  I think it will fade with time, but it will always be part of my life.  I keep thinking about something I read recently, it said "do you have cancer, or does it have you"?  At this point, I have it and I hope it stays that way.

From what I am told, pure DCIS is never treated with chemo; not sure why you'd be meeting with oncology.

Eloise

Oncologists also recommend (or don't) hormonal treatments such as tamoxifen, so that's why you'd be sent for a consultation with one, even for pure DCIS where chemo is not an issue.  At my HMO the protocol is the surgeon hands the patient off to the medical oncologist, medical oncologist hands off to radiation oncologist.  But that isn't necessarily the only order you could see them in. 

LiveFreeinNH

I am also in a similiar spot. I have had 2  surgeries and still one close margin. My surgeon is recomending mastectomy. but said  she would do a re-excision if I wanted.  I just want this all behind me but I know it won't just go away. I wonder why one will encourage a mastectomy while another (surgeon) will tend to push for re-excision. I had a second opinion in Boston and that surgeon said pretty much the same thing. I am so torn about making a decision I will regret but have come to the point where I just want to get on with my life. Everyone is different but I agree we can't be too hard on ourselves. I am promising myself that I won't regret whatever I decide and leave it in God's hands. If it happens again, well that I will deal with then. (I know I will worry too) Thank you all for your input here I am so greatful for those who are a few years out and stick around for us who are new at this. (ie:geebung)

CTMOM1234

All of this is so stressful and the best one can hope for is to make the right decision for herself with the information available at that time. And then find inner peace with the decision. 

When I was where you all are about 1.5 yeas ago, I found a lot of comfort in posts by Beesie, who eloquently explained her own situation, and you can still find her threads and posts on this dcis board. Mastectomy is amputation, and I just wasn't willing to go there if I still had the option. But with that comes the acceptance of a slightly higher chance of recurrence, as well as having to undergo rad. treatments.

I'm a thinker but once I made my decision, I vowed I'd have no regrets. That included a lumpectomy, snb, rads, and no tamox.

Good luck and may you, too, have no regrets.

BeckySharp

pbgirl--I was dx with DCIS high grade in January.  I had surgery in February with clear margins.  The following week I had mammosite radiation for five days.  Now I am on tamoxifen for five years.  I have decided to not second guess and hope for the best.  I followed the best advice given to me.  Not getting clear margins the first time is not particularly bad.  Go back and read some of the advice on margins.  With DCIS you can always make further choices later such as a mx.  Becky

pbgirl

Thank-you so much everyone.  I too really appreciate the women who are "a few years out" to help the rest of us through this nightmare.  I am sticking with my lumpectomy and starting rads May 16th.  I think I will take Tamox.  No regrets.

Blessings and good health to all