Hi - I had my first excision 10th May which resulted in 16mm Invasive DCIS ER+ PR+ HER2-. No clear margins.Second excision 24th May which resulted in 10mm invasive DCIS and a 6mm Tumor (whats the difference?) No clear margins.Three weeks later - yesterday I had an MRI as I thought they didn't know the second DCIS was there so lets have a proper look.Firstly I was told I would have the excision and then to radiotherapy and hormone treatment. After the second excision I was just really told what I had and given a booklet 'Breast Prostheses and Reconstruction' nothing else. I am going tomorrow to see the BS with a copy of my MRI and a decision will have to be made.My question is: (if anyone has any ideas) I would like to have a bilateral mastectomy with skin sparing DIEP flap reconstruction. (After a lot of reading and googling:) However if they throw at me radiation and/or chemo - should that come before reconstruction or after or not at all. I just haven't got my head around this bit.Thanks Julie.

Hi Julie. I had a double mastectomy with skin sparing DIEP reconstruction. I did not have radiation. Nothing left to radiate with all breast tissue removed. I asked my BS if there were circumstances where you would still have radiation. He said yes but very unusual & rare. Ask your BS tomorrow. I'd be interested to see what he/she says.I had a 16mm invasive ductal carcinoma, nodes clear & two excisions as well. I then paid for the oncotype test to see whether chemo would be curative if there were some random cancer cells looking for somewhere to make a new home. It came back positive so I had chemo and then the op six weeks after chemo finished. I did the test because of my family history (my mother had it at my age & survived, my sister had it and died). Otherwise it would have been straight on to radiation. Whether you have chemo before or after recon depends on your specific diagnosis but recons are usually after chemo.Whatever you decide and do, at the end of it all, as your cancer was hormone positive, you'll be advised to take a hormone inhibitor, Tamoxifen or an aromatase inhibitor, depending on your menopause status.Clear as mud?! Keep asking me questions, PM if you like. Our cases are quite similar. And don't leave the doctor's office tomorrow until you've asked and had answered all your questions! Hang in there, K xox

Hi @JJ70 going with DIEP, but a smaller version of what I have now (E cup) so will probably end up a C. Will post photos when things start happening. J

Brace yourself @Harvey1903, it's hideously expensive. Mine was $2998. We paid and then my dear father gave us the money.

Hi @Harvey1903 I had microinvasive DCIS and a mastectomy with immediate reconstruction and HER2+. My tumour was 9cms and the nodes were all clear. I did radio after chemo and 11months later I had a prophylactic mastectomy on my left breast in fear of occurrence. All my treatment was done at Peter Mac in Melbourne and the only things I've had to pay for was IVF/Egg Collection (personal choice) and the medication during chemo. Otherwise everything else was covered by Medicare.

Decision to make Invasive DCIS | BCNA Online Network

34 Replies

kmakm
Member
7 years ago
Good on you Julie. Always a relief to have big decisions made. I'm glad you found my photo story helpful. Sleep well tonight! K xox
Harvey1903
Member
7 years ago
Hi there - well thanks to everyone I have made the decision to have a mastectomy and reconstruction right breast and have the other boob balanced (right word?) DIEP reconstruction with skin and nipple saving. No chemo or radiotherapy.

MRI was OK, nothing to worry about. Was offered a 3rd excision - which meant I would need radiation after. ??

So now waiting for appointment with PS, two weeks. Then to surgery. Thank you to @kmakm and @JJ70 for your photo stories, and the others that were on the thread (though it took me a while to find you!)

Julie
Breathing easier now...
Sister
Member
7 years ago
Rads through public system - everything else private has kept my costs minimal so far ( if you don't count the massive health insurance premiums). With the genetics testing, there have been some changes to Medicare subsidies recently so still worth checking out. I got the Braovo test free as my sister was 32 when diagnosed and I have a cousin who had cancer (possibly BC). So it's worth checking into as I thought from reading the website that I would not qualify.
kmakm
Member
7 years ago
@nikov Rads is the one treatment I managed to avoid...
nikov
Member
7 years ago
@kmakm I know a few people who have, especially with radio
kmakm
Member
7 years ago
I didn't pay for chemo @Nikov. Well, private health insurance, so I suppose I did! But not at the point of having it.
nikov
Member
7 years ago
Haha, yeah definitely worth looking into RE: out of pocket expenses. I still find it odd and feel like I'm the only person that hasn't had to pay for chemo or radio. Am I missing something? :neutral: best of luck with all the decision making @Harvey1903
Harvey1903
Member
7 years ago
thanks @nikov - cost is on my list, going also to Peter Mac. No worry about egg collection that boat has sailed. @kmakm I think a double mastectomy is where I'm heading, I'll let you know after tomorrow. :)
kmakm
Member
7 years ago
It's brutal eh @Harvey1903? But with the family history and my responsibilities I felt had to throw the kitchen sink at it. The tumour being under 2cms meant that chemo wasn't automatic. The oncotype test sadly isn't covered under Medicare at all. I didn't want to have chemo unecessarily so with my oncologist's advice I did it.

Even with my father's help breast cancer has used all our 'emergency' savings. Cancer is an emergency so that's what they're for I suppose! It's a priority to build them back up now.
nikov
Member
7 years ago
Hi @Harvey1903 I had microinvasive DCIS and a mastectomy with immediate reconstruction and HER2+. My tumour was 9cms and the nodes were all clear. I did radio after chemo and 11months later I had a prophylactic mastectomy on my left breast in fear of occurrence. All my treatment was done at Peter Mac in Melbourne and the only things I've had to pay for was IVF/Egg Collection (personal choice) and the medication during chemo. Otherwise everything else was covered by Medicare.

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Decision to make Invasive DCIS

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