DCIS. - confusing information

[Coralie Stephney]

Hiya I'vejust discovered today that following my news in the corridor in front of people, that my consultant doesn't have a mastectomy list??, could i see someone else, so before i went in to my consultant i knew i was due a mastectomy? However my consultant said he made an appointment at 1pm next Monday to see the Plastic surgeon at St Thomas. I phoned to check as we havent recieved the letter and thoroughly pissed off as no appointment has been made. This happened after the microdochectomy for results. Im so fuming as its Thursday now and i was promised first appointment at 1 so i can get back for my son. Ive tried to get the consultant but he's gone home. The appointments guy said he can see on notes its been requested but not actioned. Ive just emailed the clinic manager but I'm so disappointed and stressed out by this all. I don't trust anything said now because it keeps changing. Rant not over but got to settle my son nowx

[Steph J]

Hi Schumi 

Just wanted to wish you luck for next week . Im recovering from my diep which I had on 5th Dec . I made my decision like yourself after reading as much as I could . The decision was right for me and Iv been given the all clear and no further treatment required . Ill be interested to follow your progress . Take care Steph x

[Coralie Stephney]

I feel the surgeons are learning lots of different operations before ending up with masectomy. Wish they never made this DCIS such a good cancer to have because ive still had to have a bloody masectomy. I was diagnosed August last year. Id be recovering by now if they had been realistic about common outcomes. I feel this cancer is a timebomb because with me, it never showed on any mamagram or CT scan??, the extent was not picked up on the MRI either?? It was only after microdochectomy on nipple did it show up! I now worry about the other breast.

[Coralie Stephney]

Good luck for next surgery Schumi

[schumi12]

Hi Coralie, sounds like you know exactly what you want so go for it and good luck. Have you any idea how long you might have to wait. I feel a bit sorry for the surgeons they used to be criticised for chopping breasts off willy nilly but now they seem to be doing everything to preserve the breast. I think they need to realise that some women (me included) would rather just have a mastectomy and not bother with excisions, cavity shaves and radiotherapy. Be strong and you will get there in the end. xx

[Coralie Stephney]

Hiya Schumi12
I've been researching DIEP and some of the others but i want the DIEP now. No more messing about. I feel like a DCIS guinea pig for experimental tissue. I wish i had gone wuth my gut instinct after reading lots on this forum. I also don't want to have and implant again after researching. The roller coaster ive been on. Because i was led to believe it was not too bad and it was easy to treat ect. The ducts are everywhere and i wish i had stuck ti my guns last yearx

[schumi12]

Hi Coralie, please, please don't rush your deciison regards reconstruction.  I was diagnosed with DCIS in October had a WLE in November but they didn't get clear margins.  I decided I did not want a cavatity shave as the surgeon said he could not guarantee clear margins.  After doing an awful lot of research I'm having the DIEP next week. I've decided on this type of reconstruction because I really do not want an implant, mainly because I don't want to be going back in 10 - 15 years to have it replaced.  Don't be rushed by anyone into making your decision take all the time you need.  I was also given the option of a "dermal sling" reconstruction which I had never heard of before, I must admit I was quite tempted but stuck with the DIEP which everyone says is the gold standard of reconstructions.  Good Luck.

[Coralie Stephney]

Hiya Pinky the bleeding was intermittent. It stopped the week i went to the doctor. My friend at work had same thing and she got sent away. Her cancer came back a year later where it was in lymph nodes neck ect. She just had a masectomy. They dont test the nipple blood only the duct thats bleeding under microdochectomyx i want it all soerted asap now.

[pinky3]

Hi again Coralie,

One bit of advice I can give you is do not feel pressured into making a decision about the type of reconstruction. When I was given choice the Surgeon gave me the info and an appointment to go back in a week with my decision. I felt overwhelmed and it was the breast care nurse who said I could take as much time as I needed and to get a later appointment if I needed more time. 

It is interesting reading about the bleeding you had, can I ask how long it went on for and if they were able to take a sample to check under the microscope? I was told the same about what might of caused it, but nothing showed up to explain it. My thought is that even if I have more DCIS it is not going to kill me and if anything invasive develops it will get spotted early as I am having yearly checks.  Hopefully it is nothing at all:)

[Coralie Stephney]

Hiya Pinky 3. I was told in the beginning that the bleeding nipple was just a blocked duct or papaloma. My friend, who had a previous bleeding nipple, told same and then developed invasive cancer.she came with me to ensure it was checked properly. Nothing showed so told its good news, then i had a microdochectomy. Results came back i had low grade DCIS. After op i had MRI. I asked do i need a mastectomy. I was told overkill. Now i feel DCIS is a hidden time bomb and bits and bobs taken out as ive had, could not predict the extent of this desease. Hence the mastectomy. All very confusing. My emotions are up and down. Now trying to get feed back of DIEP reconstruction compared with implants before Mondayx

[pinky3]

 Hello Coralie,

I am sorry to hear you now need a mastectomy, hopefully it will all go smoothly for you whatever type you decide on. Also you know there will be lots of support and advice available from Ladies on here who have had a mastectomy:)

I was treated in the past and managed to avoid a mastectomy, but have to say I sometimes wish I had chosen to have it when offered as I have had ongoing issues with pain and more recently bleeding from the nipple ( which has stopped) I have had scans and everything shows as clear. I accept that the scans are okay and am trying to forget about it. What really confuses me is that I have been told by a Consultant  that no treatment is given for low and intermediate grade DCIS anymore, which I am sure is not right! (I know there is a trial, LORIS, which is looking at the possibility of omitting treatment but it will be many years before the results of the trial are available) Sometimes I think they just say things hoping it will make you feel better, when actually it is just totally unhelpful!

It would be so much better if there was a clear countrywide protocol for dealing with DCIS of all grades and that we were all  given clear and concise reasons, including appropriate statistics to assist in decision making.

Another area of concern is that there does not seem to be a way for surgeons to determine the extent of DCIS,  it would save a whole lot of trouble, worry and no doubt money if it was clear from the beginning how much of the breast was involved! We can only hope that improvements in scanning provides a solution in the future to save other women from needing to go through multiple surgeries and the associated  physical and psychological trauma.

Well that's my little rant of the day over, apologies Coralie for hijacking your thread but I do feel it important we discuss how it feels to go through a DCIS diagnosis, it may be minor as breast cancer goes but it sure does cause a lot of trouble!

[Coralie Stephney]

Hi everyone  one. Since July I've been on this DCIS roller coaster.  Started with a bleeding nipped.  8 days later seen in Lewisham and several mamagrams and CT  scans later was told nothing to worry  about. No sign of cancer. Had a microdectomy  to remove bleeding duct. Results Low grade DCIS. Told to have a central resection. I asked should I have a masectomy  and was told no no that's overkill. Well they didn't get clear margins and was told yesterday following a 3rd operation  for a cavity shave that I have to have a masectomy.  I wish I went with my gut instinct  and insisted on masectomy  in first place. Now looking at reconstruction  options. I'm leaning  to a DIEP. any thoughts wellcome

[76Ag]

I had already read articles about whether or not DCIS is over treated so wasn't really surprised about his opinion on the matter but what did confuse me was the difference in the recurrence risk given by the first and second oncologist.

[76Ag]

Hi Ali49. The radiotherapy was fine. I used Aloe Vera when I got home after the radiotherapy and E45 at night. My skin got slightly pink towards the end of the 3 week session and a little bit more pink in the following 2 weeks. Now 3 weeks after finishing my skin is practically back to normal. Also I never experienced  any tiredness. The only other symptom was a very slight itch around the nipple. Hope all goes well for you.

[Steph J]

Hi 

I too had the awful decision of whether to leave my DCIS to chance or whether to go for surgery .. It was  painstaking as mine is low grade . The area is 59mm x25mm which is beyond the size in which they prefer to leave alone . I used the information from this site and from speaking to other ladies in my area who had also experienced BC . Id probably say I made my mind up after speaking to a lady who said never believe what youre told first time because the story  can change , and theres no way of being absolutely sure what is in the tissue unless its sent to the pathology lab . I could well be overtreated but for me my mother died at 57  ( gynae related cancer ) and my grandmother at 29 .( I dont know what from ) . 

The surgeon and breast care nurse went over the trial with me , but I figured what the hell would I be waiting for year in and year out ...for it to become invasive ! Im extremely lucky to be in the low grade group as it is . Im having my lymph node biopsy in a couple of weeks and a  mastectomy about 3 weeks later . I feel that Iv made the right decision for me . x

[Caroluna]

Hiya

I think that the confusion is that  the medics just dont know, and thats why we end up not really knowing what to do for the best. My breast surgeon said right from the start that if my DCIS was left it may come to nothing,but it may... so I had a second opinion and had the same advice so I went ahead. Until the research can identify which DCIS will become invasive and which won't,  most of us will go for surgery. Its no comfort but...hope you get to feel ok about the treatment you decide. 

Every bestwish that you get through this ok, Caroluna

[Ali49]

Hi 76AgMy BCN told me that trials are currently be8ng held to see what happens when DCIS is treated and what happens when it's left. There will always be differences in opinion. As I face surgery for the 2nd time tomorrow I no I wouldn't choose all this but I would rather treat it than leave it until the professionals say otherwise. However you have done it now so you have given yourself the best chance. Well done!! How was the radiotherapy?

[76Ag]

I had a WLE in June followed by a re-excision after being diagnosed with high grade DCIS. The first oncologist I saw after the op to discuss radiotherapy told me there was a 30% chance of recurrence without radiotherapy and a15% chance of recurrence with it. The second oncologist I saw yesterday post my 3 weeks of radiotherapy said there was a very low chance of recurrence and when I told him about the 30% /15% risk quoted by the previous oncologist he said these figures were out of date and quoted about 5% after radiotherapy. He then went on to say he believes DCIS is over treated and if he had his way surgery and radiotherapy would not be given unless the patient was under 40 but unfortunately policy dictated the treatment he had to adhere to. I would like to believe what I was told yesterday but must admit to being a little bit confused.