three weeks on from been diagnosed.

Hi

I don't haven't any experience with reconstruction but I noticed that your post hadn't had any replies yet. By replying to you it will 'bump' your post back to the top of the discussions list.

While you're waiting for replies, if you type 'reconstruction' into the search bar in this group you'll find loads of previous posts on this topic. You could have a read through some of the more recent ones and reply to any where you think the poster might be able to help you further.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi

I've just had a read of your profile and I am not sure if you mean you have been diagnosed with DCIS when you write you have been diagnosed with CDSI?
If so, then this is reasonably good news.  I know having cancer is NOT good news, but if it is DCIS, then it is sometimes called pre-cancer because it hasn't become invasive. The tags you had put in are to help the surgeon identify where to operate, so presumably with 3 tags, you have 3 areas of DCIS.  DCIS is described as stage 0 and then it can be 1 of 3 grades.  grade 1 is slow growing, 2 - intermediate, 3 - fast growing.
Have they specifically said that you will need a mastectomy (due to the amount of DCIS/size of your breasts/where it is within your breast) or have they mentioned Wide Local Excision (WLE formally known as lumpectomy)?

I had a 15cmm cancerous lump (IDC - invasive ductal carcinoma) - Oestrogen positive (ER +) , grade 2 and then 2 areas of DCIS -54mm in total, grade 3, ER negative (ER-).  The type of DCIS/cancer you have will depend on your treatment plan too.  ER+ is usually tablets for 5-10 years post op.  Also DCIS doesn't normally require chemo. because it's not yet invasive.  As too, with ER+, because the tablets do the job instead.

It is unusual to have 2 different forms (as I did), but not unheard of, of course.  Because of the IDC, the DCIS was 'lesser' ie-DCIS is not life threatening, so my treatment plan was based solely on my life threatening cancer.

Because I was able to 'get away with' the WLE, I had radiotherapy to the remaining breast and have been on tablets for the last 3 years.  Radiotherapy isn't usually used after a mastectomy following DCIS, but it IS for a WLE.

Have your team told you all the specific details of your diagnosis? (that they have at the moment - things might change after surgery as they actually get in to have a look, of course)  If so, it's worth adding to your profile and you'll find that the ladies here will be able to give you much more information.

Keep posting and asking for advice with as much information as possible and you'll be sure to get lots of support.

Kindest wishes, Lesley

Please forgive my stupid mistake. I do apologise to everyone. You have given my loads of information and questions for me to ask my surgeon on Tuesday. I need to find things out. The people on here are so amazing. I will post more on Tuesday . Thank you for taking time to write to me. All the best to you x

Hi

Don't apologise at all! - it was all gobbledygook to everyone on here at the start!  As you move through your treatment, you'll begin to hear all sorts of shortened versions of things that the experts talk about, so it's really useful to have this forum for you to ask what it all means and have the support.

Best wishes, Lesley

You are a woman of pure inspiration and keep up your look on life and enjoy every bit with your partner. You have helped me more than you will ever know. All the best x

Well I’ve had my appointment with my surgeon and he’s happy I have had my three “tags” put in. I have to go to the hospital tomorrow for my pre assessment then my Covid test. Then if all is clear it’s the big day next Thursday. Things seem to change through Covid it doesn’t stop for anyone. Never mind we will get through this. I hope everyone is keeping safe. All the very best to everyone x

Hi Sparlysnow,

I’ve just seen your post. I had a skin saving mastectomy and reconstruction, DIEP flap recently. I was diagnosed with IDC in August, initially thought to be grade 3 but pathology thankfully confirmed it as grade 2. I’m now awaiting my radiotherapy unless the Oncotype test points to chemotherapy.

Do you know what reconstruction you’re having yet? I’m happy to answer any questions you may have about the surgery. Take care x 

Hi Sparlysnow, I have had reconstrction with an implant, 6 years after a Masectomy. I did not have enough body fat for the Diep option, plus I wanted it to be as straight forward as possible . Everything was fine. Very little pain. An expander was fitted and then filled every couple of weeks. Then the tube for filling it is removed when its the correct size. I found everything straight forward, a bit weak for a few days after the op but nothing major. I waited until I felt I was completley  ready for recon. Dont feel like you have to rush into it. I hope everything goes well for you.  Kind Wishes. Anna. 

Thank you very much for your kind help. It was my surgeon who said he was doing it all in one go. Then wait two weeks for the results to see what the plans are from there. Hope you are well recovered now and doing well. My kind regards x x

Hi , You should be given the different options , you can wait for recon if you prefer. I wanted to get 100% well first. Your surgeon can't make the decision for you. Don't feel any pressure, speak to the breast care nurse if you are unsure. But of course if you are certain then thats fine as well, your decision though, not theirs. Kind wishes.