Not scheduled yet...help me think this through!

buffyjc

Hi ladies! I hope you're all having a great week.

According to the radiologist, my DCIS is "extensive" so when I met with my BS, we discussed the possibility of needing a mastectomy and she sent me for an MRI which I had Tuesday so she could get another look (I guess, to be in addition to the mammo images). I'm meeting with my BS again this afternoon (pre-op). So, I've got so many questions going on in my head, I need to make sure I'm understanding everything. Here goes...

1) If she advises that a mastectomy is my best option, I would prefer to have bilateral with immediate reconstruction. If surgical biopsy trumps all and something invasive is found, by this point, I would already have TEs in place. Doesn't radiation and chemo usually happen BEFORE reconstructive surgery?

2) The hospital I was sent to for my biopsy did NOT test for ER/PR receptors. I've questioned this and have been told that if someone orders it, they'll do it. Isn't this important to know NOW before we choose what type of surgery I need?

4) I'm terrified of general anesthesia having never had it. If I end up getting a DMX (is that the correct abbreviation?), how long will I be under?

5) FWIW, I'm 41 and my mom was diagnosed when she was 59 (10 years clear!!!). I've tested negative for all the gene mutations.

Any insight anyone could provide, I would truly appreciate it.

Thank you!

Meow13

Yes they usually want you to have had chemo and radiation completed before reconstruction. They should test the hormone receptors and her2 status. I believe even with DCIS they might recommend hormone and/or targeted therapy. Also there is an oncodx test for DCIS to help advise treatment.

Gkim

hello , I'm still going for sx too. Waiting on gene testing results. Did she not let u choose first between lumpectomy radiation tamoxifen vs mastectomy tamoxifen? We have almost the same Dx, except mine in left is 3.3 cm high grade according to ist biopsy .Yes, they'll do treatments first one at a time before reconstruction, they'll put a plasma expander to stretch the tissue and make a pocket I guess first , before they put the implant depends on plastics how long . Hope goes well for u.

Nurse101

I just got diagnosed with stage 0, DCIS almost 1 month ago. The area involved in the left breast is too large (5x4x3.9) to do a lumpectomy, therefore a mastectomy is recommended. I went for a second opinion which I highly recommend. I am staying with my second opinion BS and Plastic surgeon. The results of your genetic testing plus family history will change the course of your treatment. For example, my genetic markers came back negative therefore the recommendation is for a unilateral mastectomy vs. a bilateral mastectomy since I have no family history. But if genetic testing is positive, then after mastectomy chemo is recommended. During mastectomy a sentinel node biopsy is taken and if node is positive for cancer then that changes the course after mastectomy to include radiation.

I am very glad I went for a second opinion because the new BS I'm working with offered me a nipple biopsy and sentinel node biopsy prior to mastectomy so that when I go for the mastectomy I will know in advance whether nipple-sparing is possible and I can make the informed decision if I want bilateral mastectomy. You need to know ER/PR receptors to know if you will need long term medication. If been told chemo/raditation before reconstruction.

best of luck and prayers

Gkim

r u a nurse too? Sorry we meet this way, mine is 3.3 cm in breast in MRI , and weak staining on those other stuff , now my decision is mastectomy with reconstruction. After talking with a close family dr, then another plastic sx who also had early stage had mastectomy and my cousin who is onco nurse. And some other .i guess I'm going to edit my medical profile.

Lula73

Lots of decisions, I know. For what its worth, here's my $0.02.

First question (and you may not know 100% until pathology comes in) is do you have extensive DCIS (meaning many ducts or even just 1 duct with a lot of cancer cells in them) or do uou have invasive ductal carcinoma (IDC). Big difference as DCIS means it is limited to the area inside the duct and has not gone beyond the wall of the duct. IDS means it has gone beyond the duct. Its possible to have some areas of DCIS and others of IDS.

Second question is what size is the DCIS/IDC. This is part of the staging as well as whether or not it has gone beyond the ducts. ER/PR and HER2 testing is also important because it dictates what therapies come after the surgery. Chemo and/or radiation can come before or after surgery or both before and after. It depends on the factors from questions 1&2.

Third question, have you investigated the different types of immediate and/or delayed reconstruction that are available and options each offers for adjuvant treatment (chemo/radiation). Implants are not the only option-natural tissue reconstruction is also available which allows your breasts to stay as natural as possible as well as many other advantages. And since the tissue that is used for the reconstruction is not breast tissue it does not have any increased risk for recurrence compared to implants. Check out the Website for the center for breast restoration surgery in new orleans. It is very educational on all the different types of reconstruction available and you can see before and after pics of their work for the different types of reconstruction. Wimen travel from all over the US and the world to this group for their work-including me. (Note: no matter who you decide to use for reconstruction, make sure you've seen before and after pics of their work first and that you'd be happy with similar results for the rest of your life.)

How long you're under depends on whether you're doing 1 or both breasts, immediate or delayed recon, and type of recon. Its just like going to sleep when you're really exhausted at the end of a long day. You're asleep before you can count to 10. For me at least, its a really good restful sleep. When you wake up it will seem like you just closed your eyes a few minutes before. You will not have any sense of the amount of time that has passed.

Congrats to your Mom on 10 years! I'm just a couple years older than you with no immediate family history but I had other factors. We caught mine early but still opted for BMX with immediate recon for peace of mind-what a nice peace it is. I hope you have as good an outcome as i've had so far. Good luckand keep us posted!

gb2115

I was scared of general anesthesia too, never having had surgery before, but it really was ok. It's weird how fast you fall asleep and then literally wake up in recovery. I was highly anxious but about a second after them putting that mask on, I was out!