Invasive ductal carcinoma (IDC): Anyone else?

Posted by 6750 @6750, Mar 2, 2019

I have rec’d 4 chemo + 16 radiation treatments for invasive. Has lumpectomie 1st....then one week later...
Dissection 17 lymph nodes & 3 tumors removed tumors
Got clean margin.

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@val97

I am feeling frustrated. My doctors don’t communicate well so I carry around a three-ring binder with all my tests and notes. I have early-stage invasive ductal cancer but there are aspects that have grey areas so decisions about what to do have not been clear. I’ve had to do a lot of research on my own and be my own advocate, which is exhausting.

I have 1B cancer on left with no nodes involved; there was 7 different spots of tiny cancer, and I was told that I needed to have a mastectomy on left because of the amount. I have 1B with 1 node with a micrometastases on the right. ER/PR+ Her2-.

I opted for a double mastectomy, and they took out 4 nodes on each side; surgeon didn't get clear margins on the left, so I just had a second surgery (that I had to insist on vs. her wanting me to just do radiation to clean it up) and there was a spec of cancer removed. Got negative margins. Oncotype on left was 0 and 12 on right- no chemo.

I've been to 3 different radiation oncologists. Two stated I absolutely need radiation because of lymph node involvement (micro cancer that was taken out). Both said I would be radiated from collar bone to hip on right and entire chest wall on left; however, one said 5 weeks and one said 6 ½ weeks. I felt like I was getting bullied into radiation by both of them and my surgeon. I finally went to a 3rd Radiation Oncologist at Moffitt who gave me pros and cons and didn’t make it sound like skipping would be a death sentence. I'm considering not doing radiation. I'm supposed to start Tamoxifen now. I think I’m okay with doing that but worry about side effects.

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@val97 get as many opinions as you need to feel sure of your path! That's all I can say. It helps avoid regrets and helps confidence in your plans.

You could also post about your situation on breastcancer.org.

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I am feeling frustrated. My doctors don’t communicate well so I carry around a three-ring binder with all my tests and notes. I have early-stage invasive ductal cancer but there are aspects that have grey areas so decisions about what to do have not been clear. I’ve had to do a lot of research on my own and be my own advocate, which is exhausting.

I have 1B cancer on left with no nodes involved; there was 7 different spots of tiny cancer, and I was told that I needed to have a mastectomy on left because of the amount. I have 1B with 1 node with a micrometastases on the right. ER/PR+ Her2-.

I opted for a double mastectomy, and they took out 4 nodes on each side; surgeon didn't get clear margins on the left, so I just had a second surgery (that I had to insist on vs. her wanting me to just do radiation to clean it up) and there was a spec of cancer removed. Got negative margins. Oncotype on left was 0 and 12 on right- no chemo.

I've been to 3 different radiation oncologists. Two stated I absolutely need radiation because of lymph node involvement (micro cancer that was taken out). Both said I would be radiated from collar bone to hip on right and entire chest wall on left; however, one said 5 weeks and one said 6 ½ weeks. I felt like I was getting bullied into radiation by both of them and my surgeon. I finally went to a 3rd Radiation Oncologist at Moffitt who gave me pros and cons and didn’t make it sound like skipping would be a death sentence. I'm considering not doing radiation. I'm supposed to start Tamoxifen now. I think I’m okay with doing that but worry about side effects.

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@colleenyoung

@dmsnovember23, welcome. It's a relief to hear that the lymph nodes are clear. As you prepare for your appointment next week, what questions do you have? Will you be meeting with the surgeon or oncologist? How are you doing?

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Hello. 3 of the nodes were cancerous...so treatment plan is 8 rounds of chemo & radiation.

I had my 1st round Nov. 29th.
1 down & 7 to go

I'm taking at 1 day at a time & giving all praise to the one who created me, Jehovah!!

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Does anyone have arm and shoulder aching after mastectomy?

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@dmosssadler

Hello everyone, I too was diagnosed with Invasive DCIS
with lymp node involvement.
Had a Lumpectomy. Now scheduled for 8 rounds of Chemotherapy with all 3 chemo drugs starting Nov. 29th.
Also have to get Radiationas well.

Just wanted to know what to expect.

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I see! So nerve racking! Not sure what advice to give except take one day at a time. Surround yourself with people you can vent to and voice concerns and get as much info as you can for an informed decision. This is a good resource. There are others also.

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@dmsnovember23

Was given the diagnosis of Ductal Cacinoma IDC on November 21. Told that the lymph nodes are clear. Not sure what to expect. Have first appointment on December 4.

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Lymph nodes are clear? So you had a biopsy already?

First appt. Fir what exactly?

Just trying to get more info.
What do you want to know?

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@dmsnovember23

Was given the diagnosis of Ductal Cacinoma IDC on November 21. Told that the lymph nodes are clear. Not sure what to expect. Have first appointment on December 4.

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@dmsnovember23, welcome. It's a relief to hear that the lymph nodes are clear. As you prepare for your appointment next week, what questions do you have? Will you be meeting with the surgeon or oncologist? How are you doing?

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Oh I forgot to add 14 lymph nodes were removed & 3 of the 14 were cancerous..soo, the doctor recommended 2 tighter & 1 !by it self

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Hello everyone, I too was diagnosed with Invasive DCIS
with lymp node involvement.
Had a Lumpectomy. Now scheduled for 8 rounds of Chemotherapy with all 3 chemo drugs starting Nov. 29th.
Also have to get Radiationas well.

Just wanted to know what to expect.

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@dmsnovember23

Was given the diagnosis of Ductal Cacinoma IDC on November 21. Told that the lymph nodes are clear. Not sure what to expect. Have first appointment on December 4.

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What kind of cancer? I had IDC and it was Triple Negative, no lymph node involvement. I had a lumpectomy, Adriamycin (The Red Devil), Taxal, and 6 weeks of radiation. That was 17 years ago so have faith and courage!!! Good luck and I’m sending prayers to you!

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