DCIS diagnosis. Heartbroken.

[Bazoo23]

I was diagnosed with DCIS yesterday. They have booked me an MRI to ensure its just DCIS present, they are confident it is.
Then I'm going to be having a masectomy. At 27 years old.
I'm terrified and heartbroken. I have two babies who are my world.
Has anyone else been through this?

I haven't but my mum has. I'm so sorry this has happened to you at such a young age. It must be frightening.

Not me personally (although I do have a different type of cancer) but there are some lovely ladies on this thread who have and who can help

Cancer support thread 62 - here comes the sun (hopefully)www.mumsnet.com/Talk/general_health/3239572-Cancer-support-thread-62-here-comes-the-sun-hopefully

Hi Bazoo - maybe try posting on the cancer support thread here and you'll probably find women who've gone through this.

www.mumsnet.com/Talk/general_health/3239572-Cancer-support-thread-62-here-comes-the-sun-hopefully

Sending you best wishes and hoping you have plenty of real-life support too. You must be reeling from shock at the moment but you'll get through this and you'll still be there for your babies.

Take care

Sorry, crossed posts with purpleunicorns! Am too slow...

Sending huge hugs, take these early days slowly, ask questions, ask them again if you need to. Write things down as the shock numbs your ability to remember details. Accept help, love yourself and who you are and talk talk talk to someone who will support you and just listen while you process this.

I was diagnosed at 36 with 3 children. Still here at 42 with a surprise 18month old, married earlier this year.

You can and will do this. Yes there are days treatment sucks (I won't lie) but at the end of it you are still standing there with your children.

Happy to talk if you want to. Otherwise

Thanks so much everyone.
Minxmumma that gives me so much hope. was it DCIS? What treatment did you have?

Yes it was DCIS, I was staged as 3B as there was some spread to my lymph nodes etc. I had a big lumpectomy (they might as well have done a mastectomy but didn't), removal of all the lymph nodes on my left side, 6 rounds of chemo and 28 radiotherapy sessions. After that 6 monthly checkups and scans for 5 years.

I have a prosthetic boob called George as I didn't fancy reconstruction - the tot thinks george is hilarious and chucks it in the bath. And I have breast fed with my remaining boob for 18months.

I didn't have my eggs frozen or anything as it was expected that chemo would trigger early menopause anyway - it didn't! If you are offered this and are not sure you have completed your family then talk to your specialists and take the opportunity.

Please please take gentle care of yourself and your loved ones. It is mentally physically and emotionally hard but you can and will get through it all. Take one step, one day, one bit of treatment at a time. Try not to think about the whole lot or it can get overwhelming.

Bazoo, if the MRI shows you have pure DCIS then you are highly unlikely to need chemo. DCIS means ductal carcinoma in situ, i.e. it is confined to the milk ducts and has not spread to the breast tissue, lymph glands, or other areas of the body. I think Minxmumma must have had an invasive cancer as well as DCIS, since her lymph glands were involved.

The usual treatment for pure DCIS is lumpectomy followed by radiotherapy if there is only one area of DCIS, or, if the DCIS is dotted around the breast, mastectomy. That's what happened to me; I had pure DCIS when I was 44, mastectomy with reconstruction, no radiotherapy. I'm 58 now and have had no further trouble.

I'm sorry this is happening to you at such a young age. It sounds as if they are doing the MRI just to be on the safe side. If it comes back clear, then you are almost certainly going to be OK with just the mastectomy. It still sucks, I know.

Hi kettleon stories like yours do make me feel better, knowing you're okay years on.
The DCIS is quite large and my breasts are only small so its a masectomy. Did you have a double or single if you dont mind me asking?

I only had DCIS in one breast, but I requested a double mastectomy anyway. My DCIS was symptomatic – I had a discharge – but because my breasts were extremely dense nothing showed up on the mammogram and ultrasound. In the end they did exploratory surgery and that's how they found the DCIS. I knew if I had kept the other breast, I would always be worried what was going on in there!

I am like you; I had small breasts with a large area of DCIS (in my case many small spots over a large area).

I'm planning on requesting a double too. As I'm only 27 I have to see a psychologist apparently but I'm the same as you I would always be panicking about the other side. Did you have immediate reconstruction? I so appreciate you answering my questions I feel so isolated

No wise or useful words, just sending you a handhold lass

I had to see a psychologist too. I don't know whether everyone does, or whether it is just younger women (I was 44, but apparently considered a "younger woman" because I was pre-menopausal!)

I had immediate reconstruction with implants. Most people have a recon created from their own flesh (usually abdominal), but apparently I was too skinny for that, so they had to use implants. Unfortunately I had lots of problems with them (that I won't go into because they were purely to do with my own physical quirks), and several years later I was re-reconstructed by another wonderful surgeon who was able to use flesh from my buttocks – apparently the only bit of me with enough fat to spare!

Oh that's actually a relief I was thinking a psychologist might mean they would be reluctant to say yes. I'm just so shocked by it all I don't know if I've really taken it in. My doctor was really positive and said in 8 weeks time I should be back to my normal life which I just keep holding onto.
Just praying it is all DCIS and not anything more invasive as I do have a lump but they're not concerned about that. Apparently my lymph nodes looked completely normal on the scan etc which they said is a good indication.

Yes, it's a very good sign if the lymph nodes look normal, because that is usually the first place cancer spreads to.

Bazoo, I understand what a shock it must be for you. I had symptoms for a long time before my diagnosis so I was fairly sure something was going on, but in your case it sounds as though it's come out of the blue. Could you ask one of the breast cancer nurses whether there is anyone you could speak to? I have vague memories of being pointed towards some kind of group or organisation specifically for younger women when this was happening to me.

Bazoo it's probably worth seeing clinical genetics before you decide about whether to have a double mastectomy. If you have one of the BRCA genes you are then much more likely to develop further malignancy the other side - but if not the risk is only fractionally more than the general population so you'd likely be having body-image altering surgery for nothing.

Keep talking - to your breast care nurse, find a Maggie's centre (they're amazing places to come to terms with things) and the long running cancer thread on here is massively supportive.

Radiotherapy has shortened now to 3 weeks so it really will all be over in 8 weeks or so, though you'll almost certainly need tamoxifen too. I'm not surprised it's scary - hang in there and enjoy those little ones.

Macmillan.org.uk seems to have a lot of good info on it.

Hi I'm so sorry about your diagnosis. I had dcis aged 37. I am now 49. I had an itchy sore breast and went to the doctor. Had a mammogram and they found dcis all over my breast. Had a sentinal node biopsy and that was negative. Because of my age the doctors kept erring on the side of caution believing it to being invasive cancer. So I had a mastectomy and when the results came back it as widespread dcis with maybe a bit of micro invasion. They said it had hormones in it. I saw the oncologist then who said on the balance of risk I could take tamoxifen which I did for a while. Then around 2 yeats after i had a diep reconstruction. Here I am 12 years later no issues at all with my breast or under arm. I had a mammogram every year for a while then every 2 years. My advice to you is. 1. Don't google everyone is different 2. Listen to what your doctors tell you. The oncologist told me that in years to come with research dcis will be treated differently 3. Don't pay any attention to horror stories about mastecomies. Mine was done in day case and it wasn't painful just sore 4. Ask for immediate recon if that's what you want 5. Take loads of time to process this it's a big shock.

You're all so lovely, I go months without using MNet but its always one of the first places I turn to for something important or worrying.
My consultant said she is hopeful that with a masectomy I shouldn't need any more treatment so hopefully no radiotherapy or anything. I suppose with a double the risk would be so small I maybe wouldn't need it? I'll have to ask her. It sounds so shallow but I'm worried just having one removed they won't match up? Which really isn't important but I'm only young, surely my bikini days arent over
They have recommended genetic testing in the future due to my age to check if I'm at risk for ovarian cancer also.

It's a huge shock for you and suddenly you have all this information to contend with. With regards to lopsidedness have a chat with the breast nurse about your feelings. Although my prosthesis didn't cause me any problems whatsoever I noticed I was always looking down to check it. With the recon I don't do that at all. I did loads when I had a prosthesis ironically more than I do now. I rode a motorbike went camping a swimming walking. It's does need some adaptation and some figuring out but it's doable. It's important that at this stage you really self care and keep up your self esteem. Losing a breast has no relevance to being attractive. You are young. I was too and one thing I became aware of is the magnitude of my feelings couldn't be felt by my friends. People will react in all sorts of ways. Keep people who are able to listen and be a bit objective close to you and don't forget to have fun too when you can and distract yourself

I keep having low moments where I panic its not just DCIS and it has already spread in my body Is this likely? Seems so surreal that a week ago my biggest worries were so unimportant.

This is a good documentary. Wishing you well...

I had a single mastectomy for DCIS at 23. Before kids. Didn’t want a reconstruction. I just wear a prosethis in a normal bra.

No other treatment at all. It’s over 20 years ago now. And I have not had a single problem with any of it.

It really wasn’t as big a deal as I thought it would be. Nobody knows I wear a prosthesis.

I wouldn’t recommend a reconstruction. Or a double.

Salty, wow even younger than me! Was it DCIS? That's amazing that its been over 20 years x

Sorry I see you said it was. Was up with baby!