DCIS diagnosis almost 2 weeks ago

Heather2018

Hi everyone,

I hope you are all well. Just diagnosed with DCIS and LCIS after a lumpectomy - I'm 41 years old. I have a consultation scheduled with a radiation oncologist and a medical oncologist. It's all happening so fast, my head is spinning. I'd love your help. I'm compiling a list of questions for these doctors - what questions should I add? What was your experience like and how are you doing now?

I really appreciate the support!

AMLMom

Hi Heather, I am in a similar situation. I was diagnosed last Wednesday with DCIS/PLCIS. At the moment, I understand that the treatment will be lumpectomy and radiation (subject to the results of an mri and further biopsy on another area of calcifications)

I too am creating a list of questions for my discussion with the breast surgeon next week. I would like to ask about the risk of underdiagnosis and whether there are any options to mitigate that risk. I would like to understand the risk of recurrence. I would like to understand whether a plastic surgeon will be available for reconstruction.

I think a standard list of questions is a great idea. I wonder if that exists somewhere on this site

70charger

Sorry u r both here. At this point keep the questions to just basics. You are still in a shock state & nothing is going to stick. Make sure to take someone with you to appointments. Your Dr doesn't know much more than you at this point. Once your pathology report comes back that is when all is really revealed. The waiting is really really hard. Maybe section off the questions. Questions regarding surgery, questions regarding chemo questions regarding rads etc.That way ur questions are somewhat organized & u r not jumping all over the place. Take one step at a time. As in now is the time to ask about surgery & recovery. After pathology report is in & u know for sure your plan then that would be the time to ask about next steps. No sense getting ahead of yourself as it may not pertain to your individual circumstances. Some Drs are very good about giving you all that u need to know before you even ask. This board is helpful beyond belief, read read read, just remember the info may not pertain to you. Take it one day at a time. Good Luck, keep posting, join in. Fran

Heather2018

Thank you, Fran!! I've already had surgery and am interested in others experiences. I'm confident that preparing is key, and any help is GREATLY appreciated. Hope you stay well.

Heather2018

Hey AMLMom! Thank you for the reply. I've had my lumpectomy on the 9th of this month. Initial biopsy did not come back cancerous, but doc opted to remove trouble area which came back DCIS. When is your surgery? I'm here if you need anything.

My biggest questions revolve around genetic testing and what those results could do for my diagnosis. I'd love to hear other people's experiences and choices.

I wish you well!!!

Edit: also found a good start of questions you should ask at komen.org

Thisisbleak

Hi Heather!

I have a lumpectomy on Thursday, after finding a palpable mass (turned out to be two 1.8 cm tumors) that came back inconclusive on the biopsy. I saw that you went through almost the same thing, and wanted to ask if you mind sharing some more about what your "trouble area" presented as in imaging and biopsy.

As for genetic testing- I would definitely suggest doing the full panel of tests. It gives you such a great insight in to your body and what things you may need to watch out for or be aware of, and if everything comes back negative you get some excellent happy news!

Heather2018

Hi Thisisbleak,

Love your username! How are you feeling? I'm still a bit sore from my lumpectomy. So just like you, my biopsy was inconclusive although the microcalcifications they found were in a suspicious grouping. My doctor said there was no 'known carcinoma' but the cells were doing something strange. So, we opted for surgery which came back DCIS.

I have an MRI tomorrow and genetic testing next week. Scary stuff. Please keep me posted on your progress - good luck!

tgoldens

Hi Everyone, Sorry that we meet like this. I just had 2 biopsies yesterday in right breast that had ADH 5 yrs ago. MRI show linear enhancement and non mass enhancement. What showed up on your images? The waiting is horrible.

Heather2018

Hi tgoldens,

The waiting sucks, plain and simple. My imaging showed a suspicious grouping of microcalcifications. How are you feeling today? Sending healing thoughts. Please keep me posted.

tgoldens

Yes the waiting sucks. 5 yrs ago, 12/10/13, ADH found on lumpectomy for papilloma right breast.

May 2018 left breast radial scar diagnosed on biopsy. It was decided not to remove but watch which is why I had an MRI two weeks ago along with my routine mammo and ultra sound. Mammo and US were both negative. Left breast fine now but surprise surprise to fine linear enhancement and non mass enhancement on MRI

I will keep you posted.

AMLMom

Hi Heather, thank you so much. Sorry for the late reply. I've been off the board as I'm trying to process everything. I feel like things are moving very slowly. My LCIS diagnosis was dropped but I now realize that the stains to test for invasion/microinvasion are not in yet, so not certain that it's limited to in Situ. I hope to get results tomorrow because it's hard to keep waiting for answers! I need those results, plus I need an MRI and another biopsy before there is any plan on how to proceed. Likely won't know until just before Christmas. My original biopsy was Nov 4!

I hope you are doing well!

Edited to clarify that my current diagnosis is 1 cm grade 3 DCIS with necrosis with a second 1 cm area of calcifications yet to be biopsied. Also, they want a MRI given my dense breasts. I am being told that surgery may get done just before new year or early January.

AMLMom

Hi tgoldens, wishing you good luck for your results. My Mammo showed a group of linear branching calcifications and a second cluster of calcifications. Keep us posted

tgoldens

Thank you for your thoughts! hopefully get results today or tomorrow. I don't want to go thru the weekend not knowing.

Heather2018

Wow, AMLMom. Hang in there. Just had my MRI yesterday. Wasn't as bad as I thought. 18 minutes face down on the tube. Really glad I took a lorazepam beforehand. Our diagnosis seem quite similar.

Just started reading a great book that focuses on anticancer diets called Anticancer: A New Way of Life by David Servan-Schreiber. I highly recommend this!!

tgoldens

Hi Everyone,

Diagnosis is DCIS in both areas. Saw the surgeon yesterday to go over everything. Will be having mastectomy of both breasts.

I had lumpectomy 5 yrs ago for ADH. If I have 2 more lumpectomies the breast will end up looking deformed......pretty much nothing left inside from 6 o'clock to 11 o'clock which is why the nipple sparing mastectomy is being advised.

I see plastic surgeon on 12/17/18. When I talk about it I feel like I'm talking about another person.....not talking about me.

There were also Atypical Lobular Hyperplasia

Heather2018

You got this, tgoldens!! Please keep us updated. Anything you need, please let me know. I'm in Boston but am here for you wherever you are!

alto

Diagnosed with Paget's last month via punch biopsy. I had an MRI which only identified the Paget's. During surgery they found DCIS under the Paget's (grade 3, one cell showed early microinvasion). The DCIS extends down to the edge of the removed tissue. Now I have a choice between re-excision and radiation or mastectomy. I'm early 40s. I'm also in the Boston area.

Heather2018

Wow, alto, that's crazy. I can't believe the MRI missed the DCIS. Keep me informed of what you decide to do. Let me know if you need to meet up for a tea (or wine!).

alto

My doctor said maybe it was covered by the Paget's. My doctor and husband are leaning toward the less-invasive procedure. My therapist said, "I'd want the one that got it gone" which I must say, I'm inclined toward as well. But then you hear recurrence stories even in people with mastectomies. And it's such a long healing time, then you have to figure out what to do about the unevenness, if anything. It's hard. I may just decide to do the less-invasive one because I can do it without much additional planning and prep. Seems like a bad way to make a decision, though. Although my doctor said I couldn't make a bad decision here.

alto

I had the re-excision done, and still no clear margins, so I'm going in for a mastectomy next week. I had to decide on reconstruction or not, which was difficult. I think my doctor and husband thought recon would be good for me, but hearing the plastic surgeon talk about it, it sounded like it could be a tough road with no guarantees.

I really wish I could have lots of wine! And a re-write of this part of my life! But I'll have to settle for ativan, deep breathing, guided imagery, and episode after episode of the Great British Baking Show.

I hope you are doing well!

Heather2018

I'll be thinking of you on the 19th. I hope it goes as well as possible. Recon is a difficult choice, I'd have a hard time deciding what to choose.

I start radiation next Wednesday! Looking forward to getting it done.

Please let me know how it goes.

MBPooch

alto - Sorry you've found yourself having to make that decision. After my DCIS diagnosis last year I chose to have a BMX (I had previously had some B9 findings in both breasts). I didn't want to worry about the future testing, already had implants and wanted symmetry in both breasts. I was able to do Direct to Implant so reconstruction was done at the same time as surgery. It wasn't a picnic but I can tell you recovery was far easier than I thought it would be. Best of luck in making the decision that is right for you!

alto

Heather2018, I just saw you started rads on the same day I was in for surgery. I hope you are doing well!

On the other side of my decision-making process, I can see how ‘recon or not’, they're both good options, albeit with their own paths and adjustments. It's just preference - but two weeks ago, I was convinced there was a 'right' one and I was going to botch it.

tgoldens

double mastectomy, skin sparing with extenders, this past Tuesday. all I can say is Wow BUT it's ok

Heather2018

Good luck tgoldens. Keep us posted on your progress. You're in my thoughts!

tgoldens

Thank you Heather2018. Received pathology report today. There was more DCIS in right breast and ADH in left breas. Clean margins. Double mastectomy was clearly the right choice for me.

Saw plastic surgeon today. Drains came out and bandage off.

eliza_246

So glad the decision was right for you and all going well.

Take care

Eliza

tgoldens

Its been a few months. How is everyone doing? I hope you are all doing well.

June 4th I will be getting expanders out and implants put in.

eliza_246

Hi

Good to see you are on track.

My recovery has been a long one, massive seroma and then bruising, and now a cupped handful size hard swelling over the area, surgeon says that can be normal for some people and it may not be flat for at least a year!!!

Is anyone flat by 11 weeks? Would be interested to know.

alto

I did not have any issues with seromas and I was pretty flat right after surgery. I’m sorry to hear you’re dealing with this challenge in your recovery, and hope it gets better sooner,