Diagnosed with IDC

Mia1984

Well we all have these thing that are either down by our knees or under our armpits.... you know those things that are now giving us sleepless nights.    I have just been diagnosed with stage 2 IDC in total shock I still think they are talking about someone else.  Went totally blank and speachless (uncommon for me) did not  ask a single question.    Anyhow I have loads to ask lined up for him next time.   Having lumpectomy on the 27 of November,   I have been reading all the booklets and as I have lots of other medical problems and belive me the list is long this is really the cherry on the top.    The consultant seemed to give me a very brief explanation and lets wait for the results its 17mm big hummmm lucky for me I had a mamogram for a cyst and they found this,  i say lucky because in the Uk you only get the mamogram at 50 so if I had waited two more years....who knows what would have happened.  Whats really bothering me right now is the booklet say that my breast might change shape conturing etc,   will I be offered surgery to make it look normal again? or will that be it,  I am thinking well if I have the surgery and then they say I have to have more surgery etc that would just tip me over the edge,  I am hanging onto it as it is.    I am really tempted to just say give me a mastectomy and reconstruction and take the risk away once and for all!   I have ME and other conditions the compromize my immune system so any surgery is difficult for me.   I have also read I have to wait 3 weeks for the results after lumpectomy, the stress.    Can I ask to see my mamogram and have a copy of the pathology report?  I had core biopsy done.    Mine was picked up on mamogram as microcalcifications,  and hence the biopsy.  Consultant said I would be sent appointments for other test?  what are these?  I am due to have bowel and major shoulder surgery in the next few months... what should I do about these?   Plus belive it or not we have a major problem at home and its been going on for 3 years,  we have had to move out twice for a total of 8 months now the insurance want us to move out again for six months! as they failed to do the job right,  this sure has caused me so much stress and I dont know how I will cope in the coming months with treatment and whats happening at home,  the last thing I need is a move.  It never rains but pours in our lives..  gentle hugs to all xx  

somanywomen

Mia1984...sorry for all the shock of what you are going through.....Why do they wait so long to give you appointments?...I dealt with stage 1 IDC three years ago and had been on BC drug Arimidex since, which apparently gave me a massive blood clot in my left leg about a month ago and now taken off BC drug (since it could have caused this)....Went for my 6 month (I have been having a 6 months mammo/ultrasound) for the last 3 years and now have a small area of concern on my other breast that they found last Mon, OCT 15 and am having biopsy this Tuesday Oct 23......I will have results within 3 days.....Why in the world do they make you wait so long for results??....In the US we can pick up all copies of any proceedure within about 3 days unless it is blood work that takes longer....I have a three ring binder about 3 inches thick of all my reports, scans, blood work, surgery, etc.....They say knowledge is power so try to demand your copies and sooner proceedures....So sorry you have all of this going on, but as you can see by this site, somanywomen are dealing with so many things....Take as much control as you can and try to find a Doctor that will give you a sedative to help you deal with this....Best to you.....

Mia1984

Yes thats how they do things here its all a waiting game and the stress that goes with it.   How where you treated for Idc did you have an operation as well as treatment.   I went 18months ago to the breast clinic with the same breast as I was concerned about thickening in the same area I now have the IDC at the time the consultant did not send me for a mamogram - said it was not neccessary I do wonder now if this started that long ago.   Our hospital has just swopped to digical mamograms, so they said lots of women had call backs,  I was just the unlucky, that it had to be BC.   Sorry to hear about the clot really glad they are giving you six monthly mamograms good luck for Tuesday wow three days for results I had to wait 10 days!  I am going to get as much knowledge as I can I need to be in control.  I am pre-menapausal and want to find out about hormones etc It sounds like they will know more after the lumpectomy, because  consultant just gave me the basic of the basic as I was in total shock and still can belive it,  keep thinking they have got it all muddled up.

somanywomen

I also have copies of all my scans on digital discs.....That way if I ever change doctors, I have it all....I believe one of the most important of doctors is to get to know your radiologist, I have been having 6 months rechecks for 3 years now and every 4 months seeing my oncologist for blood work and tumor markers and all has been fine....Tell them you want your copies of everything and do your own research, they will treat you with more respect if you have more knowledge...I force myself on my docs and always have a list of questions for them...My radiologist will even let me come back and show me my scans and explain them to me....He is doing my biopsy on Tuesday, I trust him and just hoping this is not a recurrence issue..

I had a lumpectomy after thinking long and hard 3 years ago....At first I just wanted both off....Then since mine was 1.5 cm and Stage 1 IDC with no lymph node involvement and having an Onco Score test (do they do that testing there?), I went for lumpectomy....Now depending on results on Tuesday, can't believe I may have to rethink decision...All my docs want me to do the BRCA TEST since my older sister just finished her radiation for Stage 0 DCIS breast cancer...I guess I will do it, just scared of results since it will mean other drastic measures...

Good Luck, and ask me anything you want...Like I said "KNOWLEDGE IS POWER"......

edwards750

Mia bless your heart you are definitely on stress overload. Its enough to be dealing with bc but all the other issues on top of that. Take a deep breath and take it one crisis at a time. I know thats hard to do but you can do it. Really what choice do you have? Of course you can and should have the scan information and path report. They should give them to you. Cant imagine they wouldnt. One thing that stuck in my mind when I was dx, and we all know they inundate you with information, was the chances of recurrence are no different from a MX and a lumpectomy. Hard to believe but thats what the BS told me. I elected to go for the lumpectomy because my tumor was small, non aggressive and Stage 1..at least initially. After the first surgery they found a micromet in the SN. The BS said that would get me chemo. It didnt. The Onc recommended the Oncotype test which is done by Genomic Labs. Pricey but some insurance companies pay for it; ours did but even if they dont they will work with you on the payment. Worth it. My score came back low - 11 and my tumor was determined to be non aggressive and smaller than first thought. With that score I had 33 Rads treatments instead of chemo. Of course I would have done what I had to do to prevent recurrence but have to admit I didnt want to do chemo. Frankly, who does? None of us are promised guarantees no matter what stage or grade our bc is but remember the treatment of bc has come a long way. My mother was dx in her late 60's which was over 20 years ago and that meant mx even though there was no cancer in the lymph nodes. Now you have choices. Remember whatever you decide it is your life so when you make the decision dont second guess yourself or let anyone talk you into something. I read a lot of material like most of the other ladies did but it can be confusing. I like and trust my ONC. She will be the most important dr you will be dealing with. Shop around if you dont like the one you have. Good luck. Keep us posted and try not to worry. We have all been right where you are...this forum is a godsend. Diane