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dcis confusion

11 REPLIES 11
stressy_messy
Member

Re: dcis confusion

I'm glad you mentioned it Annie.I had high grade DCIS and invasive cancer.I had central mastectomy so still have a little bit of boob.I was told not to worry about the DCIS as it was gone now into the bin and all the treatment I had (chemo and 33 rads) it wouldn't come back.I'm not scared about it I just wish that if there was a risk then they should say,I never think or worry about a recurrance in my breast and dont check them inbetween mammos, perhaps I should.I think more about distant spread.

Melxx

Annie22
Member

Re: dcis confusion

It was just DCIS (high grade) picked up on a routine mammogram, so went from dx in October 2009 to mx in November 2009 - so a big shock as I had no symptoms. And technically, DCIS is not cancer, it is a pre-cancerous condition. So, I had wanted to leave it and re-check it in 3 months time to see whether it really was changing. My onc. said that I could, but in my case, it seemed aggressive, and there was a risk that there was already IDC there that wasn't possible to see on any scans.

However, the pathology report on the removed breast confirmed that there was no invasive cancer, clear lymph nodes and I had clear margins. So, on the face of it, I should have been all sorted.

The Royal Marsden (where I had the treatment) are going back over their reports to see if anything was missed, but my current oncologist says that you can't eliminate risk - especially as we have do not have unlimited resources. As enluck says, I am one of the unlucky ones and clinical decisions are made on risk/benefit analysis all the time, which I'm OK with.

I didn't want to alarm you, I just wanted to explain that there is some risk. Everyone had been so clear that there wasn't any, and I wished I'd known, so that I could act more quickly than I did.

Let us know what you decide to do, so we can all support you.
Annie

stressy_messy
Member

Re: dcis confusion

Hi Annie I agree it is all confusing isn't it. was just wondering and maybe being a bit dim here lol,But was it DCIS you had first which is confined to the milk ducts or IDC which is invasive cancer.

Bet wishes Melxx

Daisy_do
Member

Re: dcis confusion

I had DCIS and a little invasive cancer and had biopsy, WLE and because it was found on screening and no lump to detect on feel I was lucky and decided to have mastectomy/SNB and therefore no need for chemo or rads. I am on tamoxifen and deem myself so lucky as it could have been worse.

I would also mention that I was 52 with grown children and it meant for me a complete change of life.

The decision is individual - and we must be able to live with our decision. Now having gone through it i find it was the right decision for me. I am more confident that the cancer was caught in time and although I know it could be back etc., I have learned to be the person I am - happy.

Good luck to everyone in all decision making
wishing you all happiness and health.
xx

Guest user
Not applicable

Re: dcis confusion

I know it is confusing and it is like wading through muddy waters. 1% risk they say with mastectomy. depends on so many variables, especially the surgeon and checking the sentinel node which still isn't done everywhere. mine was so early so i may be lucky but if you are the 1%(i just heard of another recently)... anyway it's risk assessment and the information to make decisions on what to do isn't really conveniently available out there; really you have to dig and there isn't much literature out there. I have a scientific background so I felt i could make an educated guess that fortunately turned out to be the correct decision for me, but that information isn't readily accessible to the general public; it's there but you have to know what to look for. and everyone's pathology is different.

Annie22
Member

Re: dcis confusion

It is so confusing. All I want to say is that even if you have the mastectomy, and there are clear margins, there is still a small small risk of there BC coming back (from a small bit of breast tissue left behind).

Don't be alarmed, as if you keep your eye on it and you are aware that this can happen, you can insist you get referred back to your team quickly. I was told 'go for mx, then there is no risk', so I did. 6 months later I found a tiny lump and went to doctor but was told 'you can't have cancer in a reconstructed breast'.

3 months later, this lump was bigger, so insisted I was referred. Stage 2, Grade 3 in re-constucted breast.

I will be fine as it is still early days, but if I had known of the risk I would have had it sorted earlier and would not have had to have so much treatment now.

I will lose the reconstruction and have a lot of chemo/rads/surgery etc. The outcome will be good, but I wish someone had explained the (very slight) risk, so I could take responsibility earlier.

Annie

Guest user
Not applicable

Re: dcis confusion

I was diagnosed with DCIS from a surgical biopsy in late October. The upper and lower margins were not excised and the other margins were within 1 mm. I chose to have a bilateral simple mastectomy with sentinel node mapping, 12/13/10. I was looking at 15+% recurrence with lumpectomy, etc.; too high for me, not a gambler. The pathology on the affected breast told me I made the correct decision. The DCIS was all excised with the biopsy and nodes are clear but the DCIS was surrounded by pre-cancerous crap. I researched and thought for two long long weeks to make the decision I did based on the little research there is. I had nothing you can feel; mine was all cellular grade 0 so early, but I had every known benign condition there is in my 'killer boobs.' I found mine when I asked for an MRI after a previous removal of some ALH detected on a mammogram. I know I won't die from breast cancer...now.

Guest user
Not applicable

Re: dcis confusion

hi there i was diagnosed with dcis about 4wks ago left side, i had had mammogram and it shown the LUMP and calcification, i had core biopsys and ultra sound scan done and they came back positive result, they told me i had to have mastectomy due amount of breast that they wud of had to remove it would leave me lookin really deformed and that i should only need this surgery no further treatment.I had mastectomy and strattice and implant reconstruction and sentinol lymph nodes 4 of them removed on 13 dec,

Before i do say anything else i totally understand how scared etc you must be feeling, i do think you have several questions that you need to ask, i know personally that each time i had to go to see the surgeons i had thought of a milion and one questions that i wanted to ask yet when i got there i had forgotten them!! you need to start firstly with writing down any questions that you have got no matter how trivial or silly you think they are!!! did they put you intouch with a macmillan nurse?? if yes get intouch with them they have lots of answers and liase with the surgeon which you will be treated by.
I am wondering why they are advising you to have the other breast removed as well does it have any lumps etc did they see anything on your mammogram??? I know you have lots to take in and think about and i know that this will be causing you lack of sleep etc etc i hope that i have helped with a little of what i have said!! take care of yourself and get together your list of questions which you want answering!!! Good luck if i can help with any questions etc feel free to drop me a message. Kind regards xxx

Guest user
Not applicable

Re: dcis confusion

RAGDOLL63,i RECEIVED THE RESULTS OF MY WLE for high grade DCIS on the 2nd Dec and was told clear margins had been achieved but due to size of area affected ,required either radiotherapy or I could go down the alternative route of mastectomy. I so understand how you must be feeling. I have'nt made my mind up yet but will be doing so on the 6th ,What I was told was that DCIS can return and sometimes it can return as an invasive cancer, even after radiotherapy.Can you speak with the breast care nurses to go through what you were told as it sounds like you were (understandably)overwhelmed .Keep in touch,I'm sorry you're in this situation but hope we can gain some mutual support from this!

Everton_babe
Member

Re: dcis confusion

Hi Ragdoll

Youve already realised it quite a minefield now that youve been diagnosed. Everyone has a different story and theres such a lot of different options, Id advise you to phone the breast care nurse and ask to see her or consultant in person to discuss whats right for you.
I was in a similar situation. Initially told a lumpectomy and chemo, then further tests showed several(multifocal)lumps, so was told mastectomy and no chemo! Very confusing and so overwhelming when its all foreign to you.
Im sure others on here will be able to suggest a list of questions for you to take to the meeting so you can be as well informedas poss.
I sometimes regret I didnt ask as many questions as I should have at the time, so I think youre doing absolutely the right thing to explore all your options.
Many best wishes
Cathie

Lucy_BCC
Member

Re: dcis confusion

Hi ragdoll and welcome to the BCC forums

In addition to the help you will receive here from your fellow users please feel free to call our helpline where you can talk things through with someone in confidence, the line is open 9-5 weekdays and 9-2 Sat on 0808 800 6000.

BCC have published a factsheet about DCIS which you may find helpful to read, you can order or read a copy via this link:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cance...

Take care
Lucy

Guest user
Not applicable

dcis confusion

Can anyone please help me? I was told i had dcis in situ in october,i was then told i needed to have a wide local excision which i had on november 2nd. I then returned on the 17th november for the results only to be told that was only a small clear margin & that it maybe more widespread than they first thought or something like that,& that it was the consultants advice that she recommended that i should have a masectomy on my right affected breast & that i should consider doing the same to my left breast aswell & take out lypth glands.I was also informed that if i had this treatment i would'nt need any further treatment. The lump was taken from the top right of my breast. I was told just like that so cold & clinical.
I was not informed of any other alternatives or anything just you need this surgery. also i was told to go home and think about it and not to worry ha. I am now scared to death.
If anyone can help me i will be so so grateful.