Hi Kat

Really sorry you find yourself having to post here but nice to meet you. Do you have DCIS without IDC - is that what you mean by the tumour? If so, it sounds like quite a small area which is positive. It's such a hard decision and I often like them to talk me through the risks and benefits. DCIS behaves differently I know but hopefully if you know the grade that should mean they can give you some sense of what your best option is. It's got to be what's right for you and your life.

I have got invasive breast cancer, diagnosed a few weeks ago. But I also have some areas of suspected DCIS that still need to be biopsied. It's such a personal decision. I'm 41 and waiting for genetic test results but I feel like I want a mastectomy even if the recurrence risk is less that I expect it to be, I have got loads of cysts and benign issues that have recently come to light and so I will always be worrying about the latest lump or scan result. They have given me a macmillan book on reconstruction options and the photos have some  good examples of how new boobs can look if you do opt for mastectomy with reconstruction . That said, a very close friend had bc a few years ago when she was 38, and she hated the idea of a mastectomy so did everything she could to avoid one. I don't feel as attached to mine, especially not right now!

have you got a breast care nurse you can talk things through with? Mine has been really lovely and it's helped to chat with her.

wishing you all the best

lisa x

Hi Lisa

Thank u for responding m, yes at the moment I only have DCIS but got an MRI booked for Sunday to make sure there is nothing else. I have always had problems with my books, I gave had a cyst removed a few year back & also had part of my milk ducts on both breast removed due to infection, I gave always had a discharge even after having some of them removed but they just said to deal with it as they did not want to operate & possibly remove the nipples at quite a young age, so I am now thinking if I have a mastectomy that that will also sort that problem out. As yet I've not been assigned a nurse but hoping they will once I have been for the results of the MRI. They decision may be taken out of my hands if the MRI shows anything else but wanted to get it clear in my mind when I go. I just think if I have a mastectomy then there will be less tissue to become cancerous, I am like you, I'm not that attached to mine just want to make sure that there is minimal risk for a recurrence. My daughter is 21 & I've always drummed into her & shown her how to check for signs but she is now concerned that she has the faulty gene. 

I do hope that the biopsies come back fine for you & that you are sorted soon

Thank you so much, its so nice having someone who understands ️ 

Kat xx

Hi Kat, 

Really sorry to hear that you have been diagnosed with DCIS and have a big decision to make. Hopefully the MRI will reveal no hidden nasties and then you will have all the information to make the right decision for you. 

I was diagnosed with 24mm DCIS intermediate grade back in Feb. MRI showed nothing extra and I opted for lumpectomy. Pathology upgraded it to high grade but had clear margins so that was a positive. I am also having five rounds of radiotherapy starting 12th July. My mum also had breast cancer (invasive) but no other family history. I'm 44 so young-ish but would definitely opt for mastectomy if I ever had any further DCIS or worse in the future.

I wish you all the best for your MRI and in making your decision. 

Vicky x

I think the MRIs are good at picking up very subtle and very early issues so hopefully it won't change anything for you. My consultant was talking me through DCIS today and said it's stage 0 so the 'best' possible time to find it. I feel very positive for you! My suspected DCIS areas are bigger eg 3cm so that will also impact the surgery plan.

Sorry you have also got other breast issues too - I feel like they are more hassle than they are worth right now! I'm sorry your daughter feels worried too. I totally understand that but the geneticist I saw said issues don't tend to appear until you're over 30 if you do have a mutated gene. My little girl is only 5 so has no idea what's going on thankfully. If I do carry a gene mutation then I feel like at least she can be scanned early and hopefully monitored closely. My cancer was only found because I felt a lump which was actually a cyst. The mammogram found the cancer behind it but quite far back so I wouldn't have felt it – not at the moment at least. I could have been diagnosed a lot later so feel fortunate in that sense. The suspected DCIS issues were an extra surprise but weren't visible on mammogram or ultrasound but that's why I think the MRI are good as unlikely to find something too bad as mammo and US are obvs really good at that!

wishing you all the best for the mri on Sunday and hope the results help you decide about your treatment. I'm sure you'll get a nurse at your next appt and that will be really helpful. I feel positive for you but know how stressful this all is so sending lots of strength vibes your way! Let me know how you are doing xxx

Hi, sorry to find you here and that you are going through this.  I was 54 when I was diagnosed with a 1cm invasive breast cancer back in January after they found calcifications in a routine mammogram.  I was due to have a lumpectomy but 2 days before my surgery it was cancelled and I was told more had been found which after further biopsies resulted in low grade DCIS.  
Making the decision to have a lumpectomy or a mastectomy is so difficult and a very personal choice.  I decided on mastectomy and I'm now 12 weeks post surgery.  Initially I was just "get it off" I don't care what it looks like as long as it's all gone.  That was naive of me because I underestimated the trauma I felt afterwards about losing my breast, especially as I couldn't face the quite radical surgery of reconstruction.  
 

However, despite the sadness of losing my breast, I'm now very glad I did!  I decided to get a copy of my post op histology report and it was quite clear that as well as the two areas, they also found LCIS and lots of other changes, inflammation and it was very cystic.  There was things that hadn't shown up in the biopsies and it was all a bit bigger than they thought (although thankfully still stage 1).  I was SO glad it was all gone frankly and mastectomy was right for me.   Very often, there is no radiotherapy needed after mastectomy.   I've no experience of it but I understand Radiotherapy isn't without risk either so that's a big bonus. 

I didn't want the worry of the surgeon not getting clear margins with a lumpectomy, that must be incredibly difficult, especially if further surgery is needed.  With mastectomy I found the finality of it all very reassuring once I got used to it.

Wishing you all the best with your decision.  Once you've had your scan you will have the information you need to make the right decision for you.

Mary x

Hi Vicky

Thank you for your response. I am so pleased that they managed to get clear margins & fingers crossed with the radiotherapy that will be the last of this horrible disease. It is such a young age to be having to through this & i sympathise with you.

Good luck & let me know how everything goes

xx

Hi Lisa

Thank you so much for the positivity & it is so nice to be able to disucss this with someone who is going through the same thing. My husband & family are very supportive but it is helping a lot more discussing it with someone who is in the same boat. I really hope that you never have to have the conversation with your little girl. I have been very open with my daughter from around the age of 13 because i wanted to make her aware of the potential risks, i have waited for 9 years for this day to come, i knew deep down it was coming one day just didnt know when & i would hate the fact that my daughter would need to worry about if the time came like i have. She has said that she would definately want the test to know either way. I am very close to her so we can openly discuss it, which i am very lucky to have, it is not a conversation that anyone would like to have. The nurse told me that because i inquired about the faulty gene 9 years ago that the mammogram has done its job as there is no lump with mine as it is deep so i would not know that i had it.

Have you had a date yet for our further biopsies? & hopefully you will hear back soon from the genetics. Sending positive thoughts to you & we CAN & WILL get through this

xx

Hi Mary

Thank you for your response & it is so nice knowing that we are not alone with this. I am glad to hear that you made the right decision & it has worked out for you. I would definatley want reconstruction as I am not small breasted & they have told me that i will not be as big as i am now but to me that is a small price to pay for getting rid of cancer. I have always told myself that if I did get breast cancer & that it was down to a faulty gene that i would deffo get a double mastectomy, i alway think that if you remove the problem then the future looks brighter. Now i have breast cancer & do not know if I have the faulty gene my head is spinning. I am leaning more towards a mastectomy now i have done some research. Even though there is still a chance of a reacurrance of it getting it again & chances are slightly less with a mastectomy. I am so pleased that you are coming out of the other side. Are you getting any more treatment? or is that it for now? 

Take care

xx

Hi Kat,

It must be very difficult for you to make the decision at the moment.  I think you said you were having an MRI?  This horrible inbetween time waiting for tests and results is awful.  Once you've got all the information you need you can make that informed decision with your consultant.  
 

I totally get how you are leaning towards mastectomy, I felt the same and it does have its advantages, notably you won't usually need radiotherapy afterwards.  
My treatment has finished and was just surgery and hormone therapy (Tamoxifen) for now.  It does give me some comfort that they have taken the breast off, it's gone and I'm told, God willing the cancer is unlikely to return.

Prayers and thoughts for you and everyone going through this, you will get to the other side, keep going taking it a day at a time and stay strong.

M x