IDC - recently diagnosed - treatment

Kkmoore

I have recently been diagnosed with grade 1 IDC in my right breast, estrogen/progesterone receptor positive. I don’t want radiation, I want a double mastectomy. What treatment have you chosen and why?

edwards750

I was DX with IDC, Stage 1b, Grade 1 in 2011. I opted for a lumpectomy and 33 rounds of radiation. My BS told me I had a wimpy cancer and he was all about saving the breast or what’s left of it. I have a nasty scar but I think in my case the lumpectomy was the right decision.

I also had the Oncotype test which is a test to determine if chemo benefits you. I did have a micromet in my SN which was a surprise and an unpleasant one. Because it was so small my oncologist ordered the Oncotype test. My results were an 8% chance of recurrence and a score of 11. The lower the score the better. It allowed me to dodge chemo thank goodness.

Regardless of all of this the decision for treatment is strictly your choice. Your body, your life. Good luck whatever you decide.

Diane

AliceBastable

I had a lumpectomy and 33 radiation sessions. The radiation was kind of tedious but not a problem otherwise. What is your objection to it? It's your body and your decision, but it's best to make that decision based on facts.

PamEP

I had a lumpectomy because my tumor was unifocal and small and I wanted to keep my body as intact as possible. I am currently finishing up hypo-fractionated radiation (3 more sessions out of 16 total). The radiation is easy enough and I feel comfortable about its eradicating any left over cancer cells.

Good luck with your treatment. This website is a terrific help with women who know the road.

MountainMia

There are a lot of different reasons to choose one treatment plan over another. It's important that you know, though, that having a mastectomy (single or double) doesn't necessarily keep you from needing radiation. The pathology of your disease won't be fully known until after surgery. What happens if after surgery, your medical team recommends radiation anyway?

NNS121317

Do consider what MountainMia said - a double mastectomy does not necessarily mean you won't be advised to have radiation.

At biopsy, I was diagnosed with grade 3 DCIS and grade 1 IDC. The tumor was described as a goldfish, not a dragon. Lumpectomy was recommended, but I opted for a double mastectomy because of family history. During surgery, they found a 4mm macromets in a sentinel node. Pathology upgraded my IDC to Grade 2 with a higher Ki-67. My Oncotype is 25. I start chemo Friday, and will have six weeks of radiation after chemo is complete. My surgeon didn't believe I would need chemo or radiation, especially after a BMX, but here we are.

What are your reasons for wanting a BMX, and for not wanting radiation? Ultimately, the more thorough your answer to those questions, the better your chances that you'll receive care you're happy with, and won't regret if something changes down the line.

farmgirl888

I had a lumpectomy with IORT @ UCSF, IORT is interoperative radiation therapy, which is a one time dosage of radiation done at the time of surgery (adds about 30-40) minutes to surgery targeted to the tumor bed. IORT has been studied to be as effective as whole breast radiation treatment.

Reasons I went this route - tumor was on left side and I wanted a more controlled dosage, I also did not want to have to take time off work to go to 20 treatments as I live an hour from the treatment center.

chmoore88

Hello everyone.. I am 33 and was diagnosed last Friday with invasive ductal carcinoma, with a 19mm (1.9 cm) mass, grade 1. I have not yet heard of the "make up" of HER2 and all of that. I know that will be a game changer as far as treatment goes, so I am worried about that. There is a significant history of cancers in my family. Of note, my Mother passed from ovarian cancer at the age of 59, her sister also had ovarian cancer, and my paternal aunt was diagnosed and treated for breast cancer. I learned since my diagnosis that she began having abnormal mammograms at the age of 23 (but no concrete diagnosis until post menopause). My maternal grandmother passed away from colon cancer, my paternal grandmother from lung cancer, and my paternal aunt at a young age to skin cancer (hence the genetic testing). About a year ago I completed genetic testing and was referred for a one year high risk follow up. The mammogram showed 2 areas of concern, which was followed up with an additional mammo, then an ultra sound, and a biopsy of both of the areas last Friday. I have a surgical consultation next Thursday. I have been researching different treatment options and it is pretty overwhelming.

Here are a few of the options I am considering:

Double mastectomy with breast reconstruction using my tummy fat - (hello tummy tuck!)

But also getting a full hysterectomy and tube removal.

Does anyone have experience with this type of combination?

Waves2Stars

Chmoore, if you make this your own post you will likely get a lot of response from people with similar dx. I am very sorry you are facing this at your young age!

AliceBastable

chmoore88, that's very similar to my family history. My genetic testing showed no connection. It's not that common for cancer to be genetic.

Salamandra

Hi ChMoore,

I'm so sorry you're dealing with this. I wouldn't get ahead of yourself now considering treatment options - you really need the expertise of your team to weigh in on that. I think the best thing you can do now is to make sure you've got a medical team with considerable expertise and experience with young women with family risk factors like yours. Many people find it useful to also get a second opinion.

Your surgeon should lay out some options at your first appointment and also tell you what kind of support they can give or referrals/connections with plastic surgery for the cosmetic aspects including any reconstruction.

A nurse navigator or social worker (many treatment centers have or there are free services like Sharsheret) can be very helpful for thinking through options as well.

Since (hopefully) many of the procedures you are contemplating will be prophylactic, you might find some helpful information on the high risk forums.

serendipity09

Kk- I'm sorry you find yourself here. I went into a BMX thinking the same thing, no radiation (that went may only reason, but it was the biggest one.) The pathology from my surgery came back as the beast having spread to my lymph nodes and radiation was back on the table. My RO and a second opinion felt it was not necessary, so I went with that. I could have done radiation, but I heard the words "not necessary" and went with that. In July I had my exchange surgery and was diagnosed with a recurrence (something that was already present not 5 months after surgery.) Radiation was my only option. I wish I had done it last year. I'm grateful to say that I'm a month and half out from my last rads session. Don't count it out just yet.

I hope everything goes well for you.

Chmoore - I'm sorry you find yourself here as well. I saw you started another post and hope you get the answers you are looking for. Best wishes to you.