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DCIS. Guilt and do you tell people it's cancer?

9 REPLIES 9
DebraC
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Hi there, you should not feel guilty about telling friends and family you have cancer. I'm not sure where you are, but it seems to be an American thing to call DCIS "pre-cancer" because it's non-invasive. The literature here in the UK calls it pre-invasive cancer. And speaking to a friend who is a surgeon, the word "cancer" is not truly a medical word, a professional would use "carcinoma" or "sarcoma" etc.

Please don't beat yourself up about the words you've used. You're going to have surgery and possibly follow up treatment, so you need the support of friends and family whatever the thing is called.

I am in the same situation as you. I'm yet to meet the surgeon to decide on treatment options, but mastectomy has been mentioned as I have smaller areas of calcification than you, but more spread out in the breast. We need to be kind to ourselves, not feel guilty and keep stress to a minimum.

 

take care,

Debra.

Kiki2
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Yes same applies to me, if I hadn't had mx the invasive tumour wouldn't have been felt or spotted, so it saved my life too! So no guilt required! Xx

Laineybo
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Hi Bottyboo

If you look at Kiki earlier post she was found to have 3mm invasive which is why I  believe dcis is never a less than cancer scenario

I had 4mm invasive discovered when I had mastectomy and also went on to have tamoxifen. This was grade 3 and her 2 positive - so the mastectomy  saved my life

Best wishes and hope all goes well x

 

 

 

 

Bottyboo
Member

Re: DCIS. Guilt and do you tell people it's cancer?

You wouldn't be having a mastectomy if it wasn't necessary. You're having it to prevent what is there now becoming worse and you needing full on treatment. You still need support you still need to get through this and you will still be able to help everybody else. Don't be so tough on yourself xxx
Swede
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Thank you.
I had a good talk with my husband and bff last
They both reminded me that as the consultant says. I DO still have breast cancer. They do not know the final diagnosis and outcome until all the breast is sliced up under a microscope. And I am having life changing surgery by having a mastectomy. So just need to get over the feelings of guilt I have for others worrying And the guilt I feel for worrying when there's ladies (and men) that will have to go through a lot more treatment than me. These last couple of weeks have all been one big head spin.
Bondgirl
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Swede, keeping posting on your thread with your worries and anxiety all the ladies here will help you through the next few weeks. And don't feel guilty you were just lucky they caught it in time had it been months later you would be writing a different post so keep smiling we will help you through. Sending hugs

Kiki2
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Please don't feel guilty, I had DCIS and it was described to me in various ways by different consultants. Pre-invasive, very early stage etc but because I had 2 patches spread apart I had mastectomy straight away with immediate recon and sentinel node biopsy. The good news is that DCIS is very treatable . Although they found a 3mm invasive tumour in the pathology my nodes were clear so no chemo or rads, but on tamoxifen for 5 years. A year later I'm fully recovered and think less and less each day about it, though it's always at the back of your mind! So good luck, hopefully your prognosis will be good too! Xx

Swede
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Thank you. x
My surgery date is not until 19th April. I could've had it sooner with a different consultant but I'd rather wait for mine to come back off holiday. So I guess the anxiety of waiting another month for that isn't helping my guilt feelings at the mo.
pinky3
Member

Re: DCIS. Guilt and do you tell people it's cancer?

Dear Swede

 

I know exactly how you feel. I was diagnosed with the same and ended up with three surgeries to get clear margins and then radiotherapy. Tamoxifen was discussed but for me risks outweighed the benefits.

 

When asked I tried not to go into too much detail and just described it as very early stage cancer and if anyone wanted more details I just described it as pre invasive breast cancer. 

What really matters is that you are going to have a major surgical procedure and possibly further treatment depending on pathology. You will need  support from family and friends and that support will need to be the same whatever words  are used to describe your diagnosis.

 

Please don't feel guilty you have not mislead anyone, it is just that at the moment you have been given the best news in that your cancer has not had the ability to spread and is most likely curable.

 

Do you have a date for surgery yet?

Swede
Member

DCIS. Guilt and do you tell people it's cancer?

Ah my heads in a spin. Two weeks ago was told I had lobular breast cancer. Went back for MRI. Had appointment with surgeon yesterday. BCN says its DCIS and it's just a pre cancer change. Surgeon then says its cancer and I'm to have a mastectomy as its over a 10cm (yes cm not mm) area. Also she's gong to do a node biopsy. She says they need to look at all the slices of tissue under the microscope incase the original US guided diagnostic biopsy only got the 'good parts' of the area. She's hooeful that I won't need any other treatment but can't say 100% until it's out.

Now after my first apt I told close friends and family I had cancer. And now I feel guilty for upsetting them if I don't have 'real' cancer. But then I won't know for sure if it's invasive until it's out. I feel like I've kind of lied to them.

What have you done?