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dcis with mi....

19 REPLIES 19

Re: dcis with mi....

I can see the temptation with that! I think because they are suggesting tamoxifen and I'm not keen until they persuade me otherwise - I'm also going to start an oestrogen reduction diet. I'm looking forward to being 5 months post surgery so I can have start my nipple reconstruction!

Re: dcis with mi....

It's been  5 months more or less since surgery and it is as if I was never diagnosed. I don't consider I ever had cancer this I think is bad. Basically as it was all removed and no further treatment the doors were shut for 12 months until follow up.

Re: dcis with mi....

Hi Kat - so glad to read your story, I'm in week 3 from the exact surgery with a DIEP, it's tough but everyday 100% improvement and got my pathology result today was 9cm high grade in areas and other activity - whatever that meant! But thankfully No invasion but they still recommending tamoxifen - I wondered what you're experience was - if you do t mind me asking?

Re: dcis with mi....

Hello Negstar

It will all depend on the size of your DCIS - if removing just that area would disfigure you - then they will recommend a MX..  If it will not leave you disfigured and they can get a clear margin then you will be offered a lumpectomy with radiotherapy.  It is very much a whirlwind time when you are first diagnosed and it feels like it is all out of your control, once you have seen a surgeon I hope you will feel a bit more in control and know what you are dealing with.  Good luck and let us know how you get on. 

Re: dcis with mi....

I have a knitted knocker.. they are brilliant.There is a Uk branch for the site.I wear it in the house sometimes if I know the delivery is due.... hate it when I am stared at

Re: dcis with mi....

In my case from routine first mammogram recall biopsy and diagnosis was 12 days..... 3days later I was on the table. It's like a whirlwind..... your emotions are all over the place.you are bruised battered and not in control, you dont know what will happen next .... 

Then you are expected to make descisions that will affect the rest of your life. No wonder you feel like you do. 

I did not feel I gained control until after the surgery findings. Both then when you are clear the aftercare seems to stop.

I am at the hang on this is my body my decision stage. There is so much pressure reconstruct..... I say no.

Re: dcis with mi....

 

Hi Kat

I've had 2 WLEs and having MRI tomorrow to see if the margins can be seen, but don't think doc very hopeful of clear image.. so expecting MX to be on the cards. Like you say -how can I go from tiny hardly visible specks to this ? I thought I was fairly clued up but really had no idea that a a scattering of DCIS often ends up with the final solution. I'm too thinking that I won't have a recon, I had several months out of action last year with a broken ankle and expect that I'll need a hip repalcement before long, so the thought of more time recovering from bits being moved about and stiched on feels just too much.

 

 So, hope you keep well and kind regards to Myrtle, thanks for taking the time to post -it makes such a difference to me to read what other women are thinking,

Caroline

PS

Have you come across Knitted Knockers, try the US site it's so generous and kind and a bit bonkers!

Re: dcis with mi....

Hello. I am sitting at home after second biopsy and feeling very shaky. The first showed precancerous but the only person that told me the proper name was the radiologist today. DCIS. I am seeing a surgeon next week and all I can think of is my childhood fear of a mastectomy .....I  don't know how I got from squishing, to recall to biopsy, second biopsy in three weeks.......you all sound so positive and brave but tell me is an 'my' always the only option? Thanks for being there in the ether

Re: dcis with mi....

Hello

I had an mri and dcis was detected by this.

Any questions just let me know x

Re: dcis with mi....

Hi kat

 

I too was the same as you. Dcis but in two areas of breast so my performed in Feb.  I had mri to pick up second area as mammogram was not showing anything.

 

I m so glad I had my and have needed no treatment either.

 

I am going to discuss reconstruction in next appointment in Feb but will need reduction in other breast too. I am thinking of requesting mastectomy in other breast too to get rid of anxiety of developing there too. At least two then can be reconstructed and will look similar.

 

Hope you re doing well xxx

Re: dcis with mi....

I was given no further option as the area affected was 6.5 cm, my consultant said that it would be too disfiguring to do anything other than a mastectomy. I was not offered any other investigations and was in 3 days later for the op as thyey had a space.

When the tissues were examined, I had an area of 16.5 cm affected.

I just wonder if they are too get in there and get it off rather than lets just wait and see for a couple of month to see if it has devloped further. Thanking back I went to my gp 4 years ago with a clear discharge fron  this side. As I was doing quite alot of training at that time and had no family history I was told it was nothing to worry about, it was probably due to the treadmill. I wish I had pushed it further.

The good news is that I had no spread to nodes and need no further treatment. I have decided against reconstruciton, I have had enough and even though its only 8 weeks along the line I am quite happy with my prosthesis, called myrtle. But I will also go out without, I dont have an issue with being lobsided.. its them others!!!!

Re: dcis with mi....

Yup, and me... how can this non invasive, caught early, itty bitty DCIS go from little calcified spots on a routine screening to an MX in a few weeks. I've gone for a second opinion and this surgeon is willing to give me an MRI to see if the margins can be shown, but ... so anyone had an  MRI to search for DCIS margin?

I'm not holding any hopes that the MRI will be helpful, but maybe I'm being pessimistic. 

Re: dcis with mi....

Hello - like you I was diagnosed after my first mammogram - high grade 5cm dcis - no choice other than a MX, Diagnosed in Jan 14, Mx and Sentinel Node Biopsy Feb 14.  I had immediate reconstruction with implant and dermal matrix, and have since had symmetry op and fat transfer, though I have not taken up the offer of the nipple reconstruction or tattoo so far.  I do not imagine your surgeon would be suggesting MX if they did not think it was medically necessary, and until they can determine which cases of DCIS will NOT become invasive cancer I do not think there is much they can do but treat it. 

Re: dcis with mi....

3 pages of questions with the breast care nurse Ifeel fantastic. No mention of mi pre op. Understand that the dcis is spread over area of 65mm so no way the beast can be saved. The nodes are being sampled purely because its standard practice with mx at my hospital. Ithink it has been shock as its only been 24 days from the initial mamogram to biopsy to op.
I just wish there was not the contraversy in the news at the moment in regards to treatment overkill.In 5 years time its too late for me to save the breast but how can you live with a ticking time bomb in you.
Support here is fantastic... you lovelies are getting me through this x

Re: dcis with mi....

Hi Kat,
Hope you got all of your questions answered this morning and you feel more informed and empowered xx

Re: dcis with mi....

Thank you,

I have an appointment tomorrow morning to plan my treatment but this time I am armed with questions and will not leave until I am happy with the information I have been given, unlike last week.

I know its still early days and I still need to get this clear in my head.

 

Thank you everyone for the support so far, you are life savers x

 

Re: dcis with mi....

Hi Kat, reading your post took me back to the way I felt after my diagnosis 16months ago. The shock is overwhelming and hard to accept yet at the same time convinced it would have spread to lots of other places. I also got fed up having Angelina used as a shining example...not to undermine her situation but if I'm correct she didn't have cancer, her mastectomy was preventative surgery.
As you get more information and a plan with dates etc. You will hopefully feel more confident that whilst not what you want, the treatment will get you through this and out the other end.
I had a mastectomy, the sentinel nodes out and reconstruction and for me none of it was anywhere near as bad as I had expected. Thanks to fantastic pain relief I had slight discomfort but no pain. I've just had my nipple reconstructed and await tattooing. Though my breast isn't the same it looks amazing considering everything, best of all I am cancer free.
No matter what lies ahead, voice your fears to your doctors, cut short conversations with people that aren't actually being helpful, remember this is treatable and you will find the strength to get through it.
Wishing you well and always happy to answer any questions xx

Re: dcis with mi....

Hiya Kat, Sorry you have had to join us but we all try and support each other and I hope you will find the forum of some help too, the way you have described feeling is so normal in these circumstances, especially the bit about wanting to thump every well meaning person that tells you to be strong etc!!  The thought that it will be every where is one we all have , the slightest twinge anywhere and we are convinced it has to be cancer! Am I right in thinking that you have been diagnosed with DCIS ? Xx Jo 

Re: dcis with mi....

Oh dear i have just read the post the quality is awful.... i need to not use my phone to post x

dcis with mi....

After my first routine mammogram and biopsy i have been diagnosed. However i sat looking at the doc and clearly remember his lips moving a card with pics being shown to me but the words he was saying seemed to be going straight over my head.All i can remember is the opening wirds of i am sorry. I was so sure the biopsy would be negative as i have no symptoms. I have been told i need a nastectomy and have an appointment monday.
All that i have thought this weekend is that they will open me up find the cancer elsewhere and i am full of tumors. I just feel numb.... am i crazy.... i have not cried and want to slap the next person who mentions Angelina Jolie or gives me the Iam sorry with the there there look. I don't need sympathy, I need to understand.At the moment i feel like I have a death scentance over me. Is this a normal reaction or am I actung like a sulking vhild.Sorry to rant but feel better for letting this out