DCIS: Making lifesytle changes but feel I should do more.

Posted by pfitzp @pfitzp, Jun 3, 2023

Diagnosed with DCIS late last year. Had lumpectomy followed by 4 weeks of radiation. Hospital here in Ireland discourages genetic testing and I'm not sure what to do? Biopsy ER+. Follow up treatment 6 monthly checks. I'm making lifesytle changes but feel I should be doing more.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@tculton

its going on 2 weeks of waiting, its starting to get to me. and yes! i have a appointment in sept. for genetic testing. thank you! i will!

Jump to this post

2 weeks is definitely too long for biopsy . Mine took 8 days and the surgeon I went to see was really upset it even took that long . I’ve had friends whose results came same day or by next day . Just depends on where you are getting it done I guess . I’ve heard typical is 3-5 days but again it depends on who you are going with .

REPLY
@auntieoakley

Two weeks seems like a long time for biopsy results. I understand that everything takes longer these days but most folks in these discussions are getting them in a week. Do they understand that this probably the longest two weeks of your life? I was in my 30’s when I was diagnosed too, somehow the decisions are different and sadly the cancers behave differently too. I am just going to cross…….everything for you.
Have you called your doctors office and asked if those results are in, just to make sure they did not fall through some digital crack?

Jump to this post

it feels like months! and not yet. I havent heard from the office nor has the report came across my portal. I really need to call....but while waiting is awful and its letting my mind get to me...in a weird way not knowing yet helps too...if that makes any sense whatsoever.. if u dont mind me asking what were ur symptoms?

REPLY
@tculton

it feels like months! and not yet. I havent heard from the office nor has the report came across my portal. I really need to call....but while waiting is awful and its letting my mind get to me...in a weird way not knowing yet helps too...if that makes any sense whatsoever.. if u dont mind me asking what were ur symptoms?

Jump to this post

I had a strange feeling in my nipple for about a year, then a lump on my chest wall up high that grew fairly quickly. It felt like a bruise but grew to a golf ball size in about 2 months. Turned out to be pretty aggressive ductal carcinoma. I am now almost 20 years out from my original diagnosis.
I understand not wanting to know, but information is power and time is of the essence. I hope you can find out something soon.

REPLY
@auntieoakley

I had a strange feeling in my nipple for about a year, then a lump on my chest wall up high that grew fairly quickly. It felt like a bruise but grew to a golf ball size in about 2 months. Turned out to be pretty aggressive ductal carcinoma. I am now almost 20 years out from my original diagnosis.
I understand not wanting to know, but information is power and time is of the essence. I hope you can find out something soon.

Jump to this post

thank you, I did end up leaving my surgeon a message. To check up on results and ask about a rash that has developed after my lumpectomy. that too also has be worried...

REPLY
@tculton

thank you, I did end up leaving my surgeon a message. To check up on results and ask about a rash that has developed after my lumpectomy. that too also has be worried...

Jump to this post

Good for you, I am crossing my fingers and my toes. I am waiting with you 🤞🙏🤞

REPLY
@auntieoakley

Good for you, I am crossing my fingers and my toes. I am waiting with you 🤞🙏🤞

Jump to this post

Thank you!

Im glad i found this website....nothing makes you feel more alone when you have no one who understands.

REPLY
@mchler73

My lumpectomy was outpatient as well. The mass I had was the size of a walnut and my surgeon took out about the size of a lemon. The surgery and recovery was not too bad but the waiting for the biopsy results was extremely hard.
Are they planning to remove the cancer cells in your left breast? Or do you know yet?
Since you know it has spread to your Lymph nodes, I wonder what treatment they will recommend?
Good luck and positive thoughts coming you way! Keep us posted.

Jump to this post

Hello again. Well spoke with breast surgeon yesterday, she wants me to get a whole body Bone scan as well as Chest, abdomen& pelvic scan to make sure no cancer cells have traveled to other organs...once results come back , the medical team will decide what course of action..but she did mention surgery to remove cells in breast & lamps in armpit..she also mentioned radiation & +/- chemo...but need to know for sure if cancer is just localized only in breast & armpit...bone scans will determine course of action.
Oh yeah, she ordered genetic testing as well.

REPLY
@dmosssadler

Hello again. Well spoke with breast surgeon yesterday, she wants me to get a whole body Bone scan as well as Chest, abdomen& pelvic scan to make sure no cancer cells have traveled to other organs...once results come back , the medical team will decide what course of action..but she did mention surgery to remove cells in breast & lamps in armpit..she also mentioned radiation & +/- chemo...but need to know for sure if cancer is just localized only in breast & armpit...bone scans will determine course of action.
Oh yeah, she ordered genetic testing as well.

Jump to this post

Hello,
I’m so glad you were at least able to get some answers! The being in limbo part of all of this is soooo hard. Your mind goes crazy with thoughts of the worst. I am waiting on the results of my Sentinel Node Biopsy and also genetic testing and am scheduled to see the Oncologist’s next week.

I am praying your scan results come back quickly and no cancer has spread!
So will you have a lumpectomy and take out the lymph nodes at the same time?
I may have missed this, but Is your cancer diagnosis Invasive Ductal Carcinoma (IDC)?

Good luck with everything and keep us updated!
We are here for you!

REPLY
@faithsls

Making treatment decisions after my lumpectomy for DCIS stage 0 with clear margins and a really good pathology report has been just as hard as dealing with the original diagnosis. I avoided a lot of research until after I had initial appointments with the radiation oncologist and the medical oncologist. I understand no one can make the decision for me--wish they could (smile). But at 65 with the great surgery outcome and 0 stage, I want to avoid radiation since reputable research suggests there can be DCIS over treatment. I do plan to do hormone therapy even if I pass on radiation. Just wondering if others in my situation and butterflyeffect777 decided against radiation.

Jump to this post

I also was diagnosed with DCIS. I am 65. Unfortunately I am going for my third lumpectomy as I did not get a 0 margin. The surgeon recommended radiation therapy also. Not sure what I will do if I get a 0 margin this time.

REPLY

I am so sorry to hear your situation. Was the DCIS big? Or do you have more than one? I had two dimensions short margin, one is 1mm, the other is < 1. I decided not taking radiation, and denied the second surgery suggestion, only have MRI after 6 months. My DCIS was 8mm. As we all know each case is very personal, wish you the best.

REPLY
Please sign in or register to post a reply.