Help with LCIS Diagnosis
Help with LCIS Diagnosis Hi all…I wanted to first say how wonderful it is to find such a forum. Thanks to everyone who reaches out with help or just lends an ear to listen.
After 2 needle biopsies (the first didn’t hit the correct site), I received the diagnosis yesterday of LCIS with fibrocystic changes. A note on the pathology report stated that although there are conflicting opinions as to the need for an excisional biopsy, one is recommended. After scouring the internet for info on LCIS, I’ve learned that many doctors just have a “wait and see” approach with LCIS and nothing further is really done. This is what my radiologist also told me. But my OBGYN referred me to a breast surgeon and said they would do a lumpectomy. I didn’t actually have a lump, but instead a grouping of micro-calcifications so I assume they would just remove the general area surrounding these.
I just wondered if there is anyone else who has been diagnosed with LCIS (since from what I read, it is pretty rare) and if so, did you have an excisional and was the LCIS diagnosis accurate. My biggest concern is the accuracy of the LCIS diagnosis, since I’ve read in several places that these are misdiagnosed approximately 19% of the time and in fact turn out to be DCIS or other definite cancers when additional biopsies are performed or additional studies of same samples are done since it is often very difficult to differentiate between the two.
Thanks for any help. At the moment, I actually have appointments with 2 different breast surgeons and my husband is worrying that I’m spending too much time researching this. This, obviously, is causing a communication gap with us so I’m reaching out to others who can better relate to the way I’m feeling. Thank you so much.
Diana
Dear Diana You may find a post by evaie called ‘LCIS and surgery’ interesting to read as you appear to have similar concerns at the moment.
You are also welcome to contact our freephone confidential helpline if you feel that you would like to discuss your concerns and options with one of our trained helpliners on 0808 800 6000. The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
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Breast Cancer Care
Thank you so much for the info.
Difficult decision there’s some info on this site about LCIS under Information at the top of the screen.
the tendency now seems to be if in doubt take it out. The problem with this approach is where do you draw the line. There’s a condition called atypical hyperplasia in which cells start dividing abnormally. I had this. Should you cut all of this out in case it may go onto LCIS or DCIS?
Even if 19% of cases go onto become cancer that means 81% don’t. Therefore surgery will be unneccessary in 81% of cases. Plus as far as I understand it LCIS is a marker for cancer that could appear in either breast. So do you have both breasts removed?
Personally I’d go for watch and wait.
Mole
lobular cancer hi ive had a mastectomy after bieng diognosed with lobular cancer in may last year ,the surgeon said when i was diognosed i would have to have a mastectomy as lobular spreads into the milk ducts mine didnt show up on mamogram and i had to have needle biopsys before they could pinpoint where the tumor was, anyway im well now and have regular check ups in case it comes back in the other breast which it can well do. hope you continue to recover well .you are in the best hands posible and they do know what they are doing …take care im thinking of you love lynn xx
Hi Diana,
Nice to hear from someone with a similiar experience to me. Have been given a date for surgery 30 Apr. Going to have wires put in and then a WLE. Going to be in hospital from the Sun till the Wed am as going to have a drain, was a bit surprised at how long I am going to be in. I had thought it would be day surgery!
Let me know how you get on with your Consultants.
Evaie
LCIS Hi Diana
I have or had should I say LCIS and yes it is fairly rare and can be confusing because there is a lot of conflicting information around. All I can say to you is that I did not have a palpable lump so it was not felt but picked up on a first mammogram (age 51). I was recalled to BC clinic where I had ultrasound and 3 biopsies and was diagnosed with LCIS.
My consultant explained that a few years ago nothing would have been done other than close monitoring but as LCIS has the ability to become an invasive cancer, now they treat this more aggresively ie lumpectomy which is what I had done on 15th March. On the day I had wire inserted then off to theatre for the lump removal. The diagnosis was totally accurate and they took all of the LCIS cells away. I only had day surgery and very little discomfort. Wound healed very well and I was back to work within 10 days. I am now waiting for radiotherapy to start to ‘clean up’ the area and then hopefully that will be it until next year when I have another mammogram.
There was no question in my mind of not having the surgery. I have been treated fanastically well by my consultant and his BC team who have answered all of my questions honestly and clearly. I also did lots of research but at the end of the day I put my faith and trust in my consultant and thus far things are going my way. I saw him again today and he explained there are no guarantees with LCIS or any other form of BC. It could return in the same breast or the other one!! but they wanted to make sure I had the best possible chance for it not to return.
My husband’s first wife sadly died of ovarian cancer so you can imagine what he felt when I was diagnosed with BC . However when we sat down to talk about things he urged me to take the treatment, we can then face whatever comes together and get on with our lives.
I have probably rambled but hope this helps you. You have to be positive and try not to get too bogged down with lots of different opinions although I know that is not so easy…
Good Luck and please let me know how you get on. We will all be with you whatever.
Lorraine
LCIS Hi Diana,
I have LCIS in both breasts. The left breast also had two tiny tumours in (2mm and 9mm) so I had a mastectomy four weeks ago. The right breast is full of LCIS. I am choosing to have that breast removed also. My consultant is going to do it either later in the year or next year. I’d rather not ‘wait and see’. But that’s just me.
Jacki xx