hi, amongs all my other types of cancer in my lump there is lots of DCIS there is also LCIS in the lump and the surrounding tissue.
I looked this up and they say that tamoxifan would be the treatment of choice but the side effects do not warrent it. fortunately/of infortunately one of the other cancers was invasive, er8 pr8 so I am having tomaxifan anyway and hopefully that will sort it all out.
I was only offered Tamoxifen because of the small amount of invasive they found. If it had been just DCIS I wouldn’t routinely have been offered it.
i think it is worth mentioning that it is not hot flushes they are worried about. Tomaxifan increases the risk of uterine cancer and of strokes. I have not got womb or a cervix so that is not a worry, and they say because i a active i should not throw off clots and get a stroke.
If you have not had a hysterectomy then you might want to risk tamoxifen to get rid of invasive cancer but not to guard agains DCIS
That’s true. I have felt it’s a hard decision because of that. I just felt that if it did come back and I hadn’t tried everything I would kick myself. Still not sure if it’s the right choice.
the one thing to realise is that you do not need to make an immeadiate decision, it does not have to be a yes or no answer, it could be a let me think about it and get some more information.
I am a recent convert to dr susan loves breast book(latest edition) she realy explains DCIS and treatments and decisions. So you might want to get that off amazon, its absolutely great and sensible about all aspects of breast cancer.
You have got the invasive stuff that tomaxifen would help especially as its PR posative, tomaxifen works best with pr postaive types. So you could ask your onc–if i did develop uterine cancer how easy is it spot, and what is the treatment and prognosis-- I dont know anything about that. It might turn out to be a better risk than the risk of the invasive stuff not being treated.
That’s sound advice O and L.Thanks.
am 46 and have been going for breast check-ups for last 15 years. Since turning 40 I have an annual mammogram. My Mum had breast cancer and a mastectomy at 42 year old and then another mastectomy at 53 followed by ovarian cancer at 54, another lump then open wound appeared under her arm at 55 and she passed away aged 56.
My sister and I had our ovaries removed a couple of years ago as it was discovered scan/blood tests were not reliable and we wanted to reduce our risk.
I went for annual mammogram on 3rd and the nurse felt a small lump, I was scanned and a biopsy done, got results yesterday - lump ok but pre cancerous cells have been found, Lobular carcinoma in situ! Naturally I am really worried and scared, has this ticking timebomb been lit!
Hazel x
Hi Hazel and welcome to the BCC forums
In addition to the support and information you will receive here please feel free to call our helpline on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat.
Take care
Lucy
there are some people that say lobular carcenoma in situ should have another name.Because it is not cancer, and not realy pre-cancer. its not lots of baby cancer cells waiting to grow up into the real thing. Its lots of abnormal cells that could probably stay there quite happily for years, but it is a warning that in future cancer could develop and should be watched. But I dont think its any more of a concern than having a genetic trait to watch out for.
these cells are normally only found when people go in for investiagations. I did read once figures for how often they are found in autopsis of ladies that did not have cancer, or from breast tissue taken out for reductions, and it was realy surprisingly high.
So it must be a worry to find them, but you are already doing the right thing, having regular checks and watching for any breast changes you might have.
what did your surgeon say about it??
I see surgeon on Wednesday to discuss options. The more I am reading about DCIS the more worried I am getting, what with people having radiotherapy/chemo/mx. All the cancer nurse told me was "A tiny focus of Lobular carcinoma in situ was also present in the specimen which was adjacent to the lump. This is classed as pre cancerous tissue which has the potential to develop in the future. The recommendation from the breast team was to remove the fibroadenoma with a rim of tissue around it.
The fact that my Mum had breast and Ovarian Cancer puts me in potential high risk, I don’t have BrCa gene but possibly another undiscovered one.
Just a bit anxious and tearful.
Hazel
hi,
I dont know if you made a typo there, but DCIS is not the same as LCIS.
DCIS is a type of cancer that is still in the ducts and has not broken out into the rest of the breast and needs treatment because if left alone it will get bigger and break out of the ducts and potentially spread round the body.this is short for ductal carcenoma in situ
LCIS are abnormal cells in the lobules but they are not cancer. They could just stay there in your lobules for ever without developing into anything else. They keep an eye on it because anything abnormal is of concern and it MIGHT develop into cancer one day. But they dont treat it because any treatment has a a risk, and most people with LCIS do not go on to develop cancer. this is short for lobular carcenoma in situ but even though thats what its called its not cancer. If you only had a small focus thats not too bad. I am riddled with the stuff but they are still not worried.
With your family history you are bound to be concerend that they found anything that is not normal, but I am sure the surgeon is going to be able to reassure you when you see him on wednesday.
But no matter what anyone says its going to b e an worrying time between now and then, you are bound to be tearful, the whole situation is fraught with anxiety, and you are not going to really feel better till you have spoken to your surgeon
Hello to anyone;eight days ago I was told I had DCIS and that I would need a mastectomy.Despite my notes haveing been faxed to my local hospital and several fruitless phone calls I still have to hear anything about future treatment.I JUST FEEL BAD.
Hello Lilasdeprovence,
Welcome to the club that no one wants to join.
I know myself that waiting is a very difficult time for all of us. I suggest you contact the helpline here, number is at the top of the page or your Breast care nurse if you have been assigned one.
Come back and let us know how you get on.
Regards,
Maggie
Hi Lilasdeprovence
I was diagnosed with DCIS after my first routine mammogram three years ago. After a biopsy I was told I would need a mastectomy. I was offered an immediate reconstruction but this was because the surgeon was fairly certain I wouldn’t need radiotherapy. I had to go to another hospital to enquire about the reconstruction but, to cut a long story short, I decided against it and I was referred back to the original hospital. Once I had made the decision to have the mastectomy without reconstruction I had to wait for the date of my operation and I felt, like you, that I had been forgotten. That is the first time I posted on here and I remember the title of the post was “I feel so isolated”. Lots of lovely ladies came on to help me.
I started ringing my breast cancer nurse until I was given a date.
As for future treatment I don’t think you find that out until after your surgery when they have a better idea of what is involved. I did have a small tumour developing but it was succesfully removed so I didn’t need radiotherapy. You will find out more after your operation.
Good luck with everything. Concentrate on getting your date for surgery first, it is no good thinking too far ahead at the moment. If you want any advice about the mastectomy come back here and I will help as much as I can as will other ladies who have had the same surgery.
Love
Maude xx
Hi Maude
I would bve interested to hear if you were offered any back up treatment after your mx. I am 12 months down the line now and still worry that I have not been given any further treatment after my mx.
suziex
Hi Suzie
I didn’t have to have radiotherapy (I did have a small tumour developing but the surgeon said it was far away from my chest wall and he managed to remove it successfully) He said my cancer was oestrogen receptive so I had a slightly more chance than average of developing cancer in the other breast so he gave me Tamoxifen. I had very bad side effects with the Tamoxifen so he told me to stop taking it, he said the side effects weren’t worth it for the benefit I was getting.
I go for annual check ups at the moment. I have a “manual” check around the mx scar and on my other breast then I have a mammogram. I think I will go back into the screening system eventually but I am not sure whether that is 5 years post diagnosis or 10 years. (I might ask that at my next check up which is coming up soon)
I hope that helps.
Love
Maude xx
Forgot to mention - I didn’t have any cancer in my lymph nodes.
Maude xx