In May of this year I was diagnosed with the following -
Examination of the tissue removed from your left breast showed an area of DCIS of high and intermediate grade measuring 23.5mm. The DCIS is associated with microcalcifications and we know that there are widespread microcalcifications in your left breast. Removal of these microcalcification would unfortunately require complete removal of the inside of your breast with immediate reconstruction if you so wished using tissue from another part of your body or a silicone implant. Some of the changes associated with microcalcifications in your breast are not DCIS but changes that often progress to DCIS. You do not have low grade DCIS.
High Grade DCIS can progress into invasive breast cancer. The probability of this happening is time dependent. According to the lowest reported estimates in the medical literature the annual rate of progression into invasive cancer is 5% (5%per year) but some evidence supports the view that this may be much higher perhaps as high as 10% per year. In addition, you must take into account the fact that there is an approximately 10% chance that this DCIS has already formed an invasive breast cancer in the rest of your breast that we have not been able to locate with our scans. Therefore the chance of you having invasive breast cancer one year from now is approximately 15-20%. " I have had minimal support from the a Brest care nurse to the point where there is no nurse available. In a nutshell I
Completely overwhelmed, and feel that my mastectomy is unnecessary. Any thoughts feedback would be most helpful. The surgeon provided further to the above & in the end I feel I am being railroaded when I asked if I could have another examination in a year (from May 2015). Peace & Love
Welcome to the forums, this must be a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
You may also like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
I’m so sorry you are going through this. It sounds fairly similar to my own case.
I was diagnosed with DCIS in April this year. Mine was much more extensive - 2 areas of high grade DCIS in the left breast and I too was told mastectomy was the only option.
I had my Mx in May (I chose not to have a reconstruction). When my post operation pathology results came back they showed that as well as 120mm DCIS I did have a small area of invasive cancer. Luckily this was only 3.5mm so despite it being Grade 3 (aggressive) I didn’t need to have chemotherapy.
I know it seems overwhelming at the moment, but do be aware that if you delay you may end up needing more aggressive treatment in the end.
I’m recovering well from my operation, getting used to the new-shape me and getting on with my life.
If your breast care nurse is not helping, do complain and ask for a new one. And use the helpline here - they will be able to answer your questions.
Hi Ali1962 so kind of you to reply. I am only just realising that I seem to be on a conveyor belt. Only after reading your reply and a couple of other threads am I realising how overwhelmed I have felt. Work, teenagers and single parentdom (recently divorced) has not allowed to ‘sit still’. I love my breasts, it’s my best features along with my legs - so I thought of reconstruction. Yet the more I think about it, I am less inclined. I think I was reacting so ‘logically’ as my ‘survival mode’ kicked in. Only after reading have I realised that only once the Mx takes places will I know if I have cancer. I originally wanted implants, only in that ‘flap’ would mean more invasive surgery to my body. So far my consultations have discussed the ‘process’ but not about my mental, emotional state. Also the assumption has been that I would have reconstructive surgery as opposed to delaying - to give me time to catch my breath… Hence the feeling that I am on a conveyor belt. Also the fact that I donot have invasive cancer, but have a highly chance? Whoa so many emotions. : (
Hi Mum3. I have to agree with Ali. I was diagnosed 6 weeks ago with a 14mm invasive ducal cancer along with intermediate dcis. The invasive part obviously grew from this. I had two previous mammograms 3 years apart with no evidence of dcis etc and both were recorded as clear. The Cancer was not palpable and had I not been called for my mammogram this year goodness knows what would have happened In my case it’s lumpectomy/radiotherapy/hormone drugs. My friend had multi centric high grade dcis 10 years ago. Had a mastectomy and no recurrence. I would think carefully about leaving it another year and ask for a second opinion. x
Hi, I have to agree with the other ladies. I was diagnosed Jan this year with DCIS in left breast (2 patches) too far apart for WLE so mx recommended. I chose to have immediate recon with mesh and implant. After surgery results showed as well as more extensive DCIS a 3mm invasive cancer which hadn’t shown up on original mammogram. Node was clear so didn’t need chemo or rads but am taking tamoxifen for 5 years. I personally felt more comfortable with getting rid of the cancer/breast, and will have yearly mammograms on other side. Recovery has been good and after surgery end of Feb was back at work by end of April. Good luck with your decision. Xx
You are right Mum_three, it does feel like a conveyor belt. In some ways it is reassuring that the medical teams know what they are doing and are experienced in similar cases. But it’s also hard to know when to accept that they know best and when to question what you are told.
I do think there is an assumption in favour of reconstruction. And it’s such a tough decision to make when your head is all over the place with the shock of diagnosis. I could barely decide what to have for lunch, let alone what sort of new boob I wanted. Take your time and make sure you explore all the options before you make up your mind.
2 things made me decide against immediate reconstruction - firstly, because I’m an F cup I would have to have an implant. I felt strongly that I didn’t want that. Secondly, the possibility of problems with the reconstruction - additional surgery, failure of the implant if I needed radiation, additional time away from work (I’m self employed, so no sick pay for me!).
I think a DCIS diagnosis is very hard to cope with emotionally - you’re told you need this drastic surgery for a condition that isn’t (currently) life threatening. And there’s a small part of me that is actually relieved they did find something sinister as it proved everything I went through was necessary (although my head tells me that’s ridiculous).
I have taken the day off work because I am in a complete state. All your kind words has completely overwhelmed me to tears. Unfortunately I have no one to support me, as I am a domestic violence survivor, and my daughters and I live in temporary accommodation. If I become unemployed owing to my health, it out my housing situation in a very precarious situation. To survive what I had & I really thought I’d bloody made it. My new job had got my career on track, and as a mum in her late 40’s with three teenagers I patted myself on the back. Now with this. I am just exhausted, no one really understands. My breast care nurse support has unfortunately been non excistent, my GP is not listening to me and I just feel like I am just another ‘case’. : (((
I have taken the day off work because I am in a complete state. All your kind words has completely overwhelmed me to tears. Unfortunately I have no one to support me, as I am a domestic violence survivor, and my daughters and I live in temporary accommodation. If I become unemployed owing to my health, it out my housing situation in a very precarious situation. To survive what I had & I really thought I’d bloody made it. My new job had got my career on track, and as a mum in her late 40’s with three teenagers I patted myself on the back. Now with this. I am just exhausted, no one really understands. My breast care nurse support has unfortunately been non excistent, my GP is not listening to me and I just feel like I am just another ‘case’. : ((( peace & love
It’s awful that you are facing this when you have already been through so much. I know it’s not the same as having someone close to you that understands, but this forum and the helpline has been a lifeline for me. So you are not alone.
I hope you managed to speak to someone yesterday and that you are feeling better today. We’ve all been through days when we feel completely hopeless, but it does get better.
Remember that cancer comes under the disability discrimination act so you shouldn’t lose your job over this (although some employers may need reminding). Again, the helpline can give you advice.
I’m a bit late posting to the forum. Was dx following routine mammogram screening (over 50’s) at local doctor’s surgery January 2016. Had a niggling feeling I might have BC even though there were no lumps but I had noticed that under my arms was a bit plumper than it used to be but put it down to muscle and fat! The next thing was an appointment with BCN and further mammogram plus vacuum breast biopsy with clip. That happened twice and then in for lumpectomy but that was postponed cause Surgeon and Doctor saw further areas that had cx cells - Intermediate/High Grade DCIS. Went away again. BCN interestingly mentioned as I’m vertically challenged and dark maybe have Ashkenazi heritage which would preclude me to BC. My great grandmother who was buxom died at age 41 and I wonder if it was breast cancer - was BC known as a disease in 1901? In the end, Consultant recommended a MX and I requested an implant - now I’ve got a brand new bust! :womansurprised:
I’ve found the forum a great source of support because like you say this illness can leave you feeling rather alone and isolated at times .You may want to have a look at the the moving forward after breast cancer section too.