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Topic: Low onco - no radiation?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jan 10, 2019 10:08AM

shellgirl wrote:

Hello all,

I was diagnosed with ILC on Nov. 7 and had a mastectomy on Dec 3 (right side only). I had to have a mastectomy due to the size of the tumor and my small breasts. I was told that I would require radiation after the mastectomy to kill any stray cancer cells not caught by the surgery. I could not have immediate reconstruction because of the radiation I would need. So tissue expander was placed in during surgery. Surgery went well, no lymph node involvement. My oncologist said she wanted to do Onco testing because of the size of the tumor and my age (50). Results came back today.....8! Great chemo. However she also mentioned that I would not need radiation. WHAT? I thought that was why I had the expander put in so that I could have the radiation. She said she didn't think I would need the radiation since the score was low. I'm wondering about these stray cancer cells they talked about earlier. Has anyone had a similar experience? I meet with the radiation oncologist on Friday. I certainly don't want to go through radiation if there is no benefit. But I also want to be sure I've done everything possible to beat this. What types of things should I ask her about on Friday?

Also, will not having the radiation speed up the process for my reconstruction surgery? I had my last fill today. My surgeon said that I wouldn't have the reconstruction until April of next year. That would give my body time to recover from the radiation. Well, if no radiation, I don't know why we would need to wait so long. Thoughts?

Thanks so much to everyone who shares their stories. This community has brought me such comfort the past 6 weeks!

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Jan 10, 2019 04:32PM - edited Jan 10, 2019 04:34PM by Meow13

I would think radiation if acceptable margins were not reached. This is not related to oncodx score, the oncodx is an indication of whether chemo may be beneficial as well as hormone therapy. I would get a second opinion.

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Jan 11, 2019 01:42AM - edited Jan 11, 2019 01:43AM by betterdazeahead

My understanding from my team here was that radiation is needed in these situations...

1. If you did a lumpectomy it is a must

2. If after your mastectomy they found that your lymph nodes were affected then radiation would happen.

3. Possibly if you don't have clear margins

At my last appointment I questioned that I have an appointment scheduled with an RO before my surgery and asked if I really needed to keep that appointment as I am having a double mastectomy and so far it seems like my lymph nodes may be OK (they won't really know until my surgery is complete 1/31) BUT I learned at due to my age (41) and my family history (no genes but multiple family members all also with no gene identified) and other factors (multicentric and some other stuff) that radiation is not off the table at this point in my situation. They wanted me seeing the RO ahead of everything due to information they already know, this way if RO deems I need it we can move forward accordingly after surgery without further delay.

I was also told that onco score only relates to wether or not chemo will be benifical.

If I were you I would ask your RO just as you posted on here about what was said to you and hopefully they will be able to clarify a bit more from their end how radiation works and in what situations they deem it necessary and vice versa. Since you have had your surgery already I would hope that they will have all the information needed to make the best decision for your situation. AND of course.....if you don't feel comfortable go elsewhere for a second opinion.

I too would think if you aren't having radiation then he may put the implants in sooner as well. You could always call his office and ask that same question.

I hope your appointment goes well tomorrow and that you do not need to have radiation. (((((HUGS))))) 

Diagnosed at 41 with multicentric ILC 4 tumors and LCIS throughout entire breast Dx 12/3/2018, LCIS/ILC, Left, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/30/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 3/13/2019 AC + T (Taxol)
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Jan 11, 2019 06:31AM dakrock wrote:

Hi Shellgirl

Sorry you are going through this.    I had my biopsy in December 2017 and it came back ILC.  BS said I could do lumpectomy and 26 rounds  of radiation and then he would have to keep checking margins on my breast to make sure they were clear.  He also worried about the damage the radiation might do to my heart and lungs.  He said to be sure do the mastectomy and have it over and he would do an immediate reconstruction nipple sparing implant.  He started me on Letrozole immediately in December 2017 and Surgery was February 24, 2018.   I did really well and was pleased.   However about 6 months later I developed melanoma on my face and had to have a plastic surgeon remove it.  It was quite large.  This past Monday I had gene mutation testing to see if the breast cancer and melanoma carried the same broken gene.   I am a nervous wreck.   One good thing is the AI really did shrink the tumor.  Before surgery the Ci67 score was 39 after surgery and the AI I was under 5.     Keep us posted 

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/4/2017 Femara (letrozole) Surgery 2/22/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Jan 30, 2019 02:43PM Suzyshacklechick wrote:

Hi ....I have a question about the Oncotype test. I had lumpectomy one month ago and went in to talk to my radiation Dr for the first time today. I do the simulation next week and he said I will do 15 sessions. But then he pulled out a folder and said I could have the Oncotype test and it would tell me if I need chemo (😳 My surgeon said I didn’t wil clear margins and clear lymph nodes and 5mm tumor) and then handed me another pamphlet about Heredity Screening test( I have zero family history), all covered by Medicare. I felt like it was a sales pitch because from what I understood I was having surgery, radiation, and a pill. He didn’t insist on these tests. Have you all had these? Thanks. I feel I have enough to worry about and chemo was never mentioned to me before. I am stage 1, Grade 1. Please tell me what you think. Thanks ❤️
Dx 11/2/2018, ILC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 12/27/2018 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 2/19/2019 Arimidex (anastrozole)
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Jan 30, 2019 03:20PM TB90 wrote:

Shellgirl: Ask specifics about your margins. I had a positive margin even with a mx. I opted for radiation, but that is not the best route for all. Discuss with your RO. All the best.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
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Jan 31, 2019 01:45AM Peregrinelady wrote:

Suzy, with the size of you tumor you are right at the cutoff for Oncotype testing. If I were you, I would read the Oncotype threads to see what others with small tumors have done. The good thing about Oncotype is it can give you an idea of whether chemo will work on you cancer. Just because it is small does not mean that it may not be aggressive. If your score comes back low, at least you can feel good about not doing chemo. If Medicare covers both types of testing, you might as well get as much info. as possible. Also, it is not the surgeon’s job to tell you your treatment plan. Good luck with your decision making and keep us posted.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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Jan 31, 2019 09:28AM beach2beach wrote:


I had a mastectomy and needed no radiation or chemo. Onco score 9. I was told by my surgeon from the beginning if nodes all clear then def would not need rad. If I chose a lumpectomy then radiation would be in play. The onco is only for benefit, if any of chemo.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 15, 2019 08:01AM windingshores wrote:

I had a 1.5cm tumor and mastectomy with low Oncotype score of 8. I did not do radiation. I did meet with a radiation oncologist who told me maybe 1 out of 5 RO's might consider it for me, but only because I had lymphovascular invasion. I would think about NOT doing it in your shoes, but that's me.

My understanding is that the Oncotype not only tells you whether to have chemo or not, but also addresses risk of recurrence. Get your full report, hard copy. It gives risk with and without chemo Assuming hormonal therapy, which halves the risk.

In my case chemo would have done more harm than good. The same was possibly true of radiation so I am just doing an aromatase inhibitor. Fours years out.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy

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