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Topic: Bilateral IDC

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Apr 12, 2021 02:04PM - edited Apr 12, 2021 03:13PM by Annake

Annake wrote:

hi, I have been diagnosed with bilateral IDC. My scans came up as non-mass, although the physical lumps are very large.

I have been told it is grade 2. going for a CT tomorrow and oncologist Monday.

anyone else with bilateral IDC?

Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-
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Apr 12, 2021 03:02PM LivinLife wrote:

Whoa Annake! That is sooo unusual! Hopefully someone else will respond who was diagnosed bilateral. I know folks are out there though would be a smaller percentage... Please check back in once you've met with the oncologist tomorrow. I'm assuming you're having the CT just prior to that appointment. I hope all turns out well with that!

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Apr 12, 2021 03:14PM Annake wrote:

hi, sorry I corrected my post. Oncologist is on Monday. Thank you LivinLife.


Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-
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Apr 12, 2021 03:46PM typhoon wrote:

Hi Annake - As you can see from my bio, I was diagnosed with bilateral BC (IDC and DCIS) about 5 months ago. My tumors were smaller than a centimeter (8mm, 5mm, and 5mm if I recall correctly). All were grade 1-2, strongly ER+/PR+, and all of the IDC was HER2-. I ended up getting a skin/nipple sparing bilateral mastectomy, direct to implant reconstruction. Both my surgeon and oncologist said that, while it isn't terribly common to see synchronous bilateral breast cancer, it also isn't particularly rare. In my case the cancer was very slow growing and had probably been there for a good long time. Because of the small size of my tumors, the low Ki-67 index, low oncotype score (9), and clear nodes and margins, chemo and radiation were not recommended for me. I am taking anastrozole for the next five years, with zometa infusions every six months for the next three years.

Wishing you all the luck in the world as you pull together a treatment plan!

Dx 10/23/2020, DCIS/IDC, Both breasts, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 12/9/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 1/14/2021 Arimidex (anastrozole)
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Apr 13, 2021 08:00AM SummerAngel wrote:

Yep, I had synchronous bilateral IDC, which isn't very common, no. For those with issues in both breasts it is more common to have one side invasive and the other not, as typhoon had. As you can see in my signature, both sides were Grade 1 tumors and I haven't had any issues since my treatment in 2015. I didn't need radiation or chemo, and I ended up only taking Tamoxifen for about 4 months due to severe side effects.

Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/28/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/4/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Apr 13, 2021 08:37AM Trishyla wrote:

I also had bilateral breast cancer, but unlike some others, both sides were invasive. For me, one side was triple negative, while the other was hormone positive. They focused on the most aggressive cancer, the triple negative, so I had neoadjuvant chemo, followed by a bilateral mastectomy. Even though I had one node positive for a micrometastis, I chose not to do radiation.

Have they given you any information on your hormone receptor status? That, and your node status will drive your treatment plan.

Good luck. I hope everything works out for you.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Apr 13, 2021 10:02AM GreenOutdoors wrote:

Hi Annake,

I’m sorry you find yourself here. I was diagnosed with bilateral synchronous IDC a few months ago. Though not common, my doctors all insist that having bilateral cancer does not mean a worse outcome overall. They just focus on the “worst” one. Just gear yourself up for lots of appointments and know that it does get better once you start active treatment.

In my case, the biopsies and scans indicated grade 2 on the left and grade 1 on the right with no lymphs involvement. However the surgery pathology report changed that to grade 3 on the left and grade 2 on the right with a 4.5mm lymph node out of one sentinel node. A total of 4 tumors were found, as well as lymphovascular invasion on both sides. So I’m undergoing chemo now and will do radiation next.

Dx at 45. Bilateral IDC. Doing my best to live in the moment. Dx 12/24/2020, IDC, Left, <1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 1/14/2021, IDC, Right, 2cm, Stage IIB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 1/25/2021 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 6/9/2021 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 13, 2021 10:30AM typhoon wrote:

SummerAngel - The surgical path report showed that there was a small amount of IDC in the (primarily) DCIS tumor on the right side, so I did have IDC in both breasts - all medium-low grade and slow-growing. My apologies, I should have been more specific in my original comment.

Dx 10/23/2020, DCIS/IDC, Both breasts, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 12/9/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 1/14/2021 Arimidex (anastrozole)
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Apr 14, 2021 03:33AM Annake wrote:

hi, I don't know much yet.

on my Histology:

ER+/PR+, HER2-

KI67 in left breast : 25-30%

KI67 in right breast : 10-15%

Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-
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Apr 15, 2021 01:43PM Annake wrote:

hi, good news. It hasn't spread. so double mastectomy with reconstruction around the 28/29th. chemo after, they are not sure if radiation will be needed yet.. she mentioned they will do some sentinel lymph node mapping (something like that) before the opp. so stage 2, grade 2 at the moment.

still need to see the oncologist on Monday


Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-
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Apr 17, 2021 01:49AM Annake wrote:

how long did some of you take to recover from a bilater diep flap surgery? I am a single mother with a 7 year old, so I think it might a rough one ahead

Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-
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Apr 17, 2021 08:28PM typhoon wrote:

Annake - Great news that your CT scan was clear! That's a big hurdle, and one less major thing that you have to worry about right now. I'm glad you've got an initial treatment plan in place - hopefully it's helping you to recover a sense of control.

My reconstruction was direct-to-implant, so unfortunately I can't be of any assistance with your specific DIEP flap question. In addition to the first hand experiences you will undoubtedly hear from others on this site, your breast surgeon should be able to give you informational literature on the surgery and recovery. I will say that I had a relative with me for the first week after my surgery, to keep an eye on me the first few days when I was still loopy from the anesthetic and pain medications, as well as to help with stuff around the house, driving to doctors' appointments, and that sort of thing. Even with my much less complex surgery, it was about a month before I was back to mostly normal. Bottom line, you will probably need some assistance. If you've told friends and family about your diagnosis, then you've undoubtedly heard a lot of, "What can I do to help?" Take people up on their offers, and give them specific things to do - they will be truly grateful to be able to help you out.

Continued best wishes to you.

Dx 10/23/2020, DCIS/IDC, Both breasts, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 12/9/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 1/14/2021 Arimidex (anastrozole)
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Apr 17, 2021 09:17PM Trishyla wrote:

Hi, Annake. I had bilateral breast cancer, diagnosed in late 2016 when I was 58. After five months of chemo, I had a double mastectomy with immediate DIEP flap reconstruction.

I won't lie. It's a big surgery, with at least a four to five day stay in the hospital. But it is totally and completely worth it. I highly recommend it to anyone who qualifies. You go to sleep with warm, natural feeling breasts and ten to twelve hours later you wake up with warm, natural feeling breasts.

As far as being a single mom, do you have an adult who can stay with you the couple of nights? Those were the hardest for me. After that, I was completely self sufficient. Heck, I was dancing in high heels at five weeks out. I would imagine you're much younger than I was, and will probably heal pretty quickly.

With so many food and grocery delivery options, you should be okay for food. And at seven, your little one is the perfect age to be a big help to you.

Biggest piece of advice I can give you is to make sure you have a highly qualified microsurgeon/s to do your surgery. It will make a HUGE difference in your outcome.

Only other advice would be to build up your thigh muscles as much as possible. They will be your go to muscles for everything from using the bathroom to getting up off the sofa. Can't stress that one enough.

Please PM me if you have further questions about the process, or recovery.

Good luck!

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Apr 24, 2021 12:26AM Annake wrote:

hi everyone, thanks for all the responses thus far.

so I am going in on the28th. I read that a rib will be removed to access the vessels. is this always the case?

Also how is the pain after the operation? I have heard it is extreme, but don't you get medicated enough to alleviate the pain?

after recovery it is 6 month's chemo, then radiation and 10 years hormone treatment.

Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-
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Apr 30, 2021 02:47PM TexasMama wrote:

I wish I had seen this earlier. I had bilateral cancer and received the same treatments and surgeries as you. I would be happy to answer any questions you have.

You mentioned you are concerned about pain. If your medication isn't alleviating your pain, tell your doctor. They should be able to give you something else. I found it helpful to walk frequently after my DIEP. I wouldn't go far- just a few laps inside the house. I really think it helped me heal quickly.

Because I had bilateral cancer, my doctor sent me for genetic testing. I am so glad she did. I learned that I have a brca2 mutation. Knowing this, I have been able to make informed decisions about how to treat my breast cancer and lower my risk for other cancers.

I hope your surgery went well and you heal quickly.

Dx 10/11/2019, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 2/12 nodes, ER+/PR+, HER2- Surgery 12/11/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 2/16/2020 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 5/18/2020 Whole-breast: Breast, Lymph nodes
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May 7, 2021 12:25PM Annake wrote:

hi all, I am recovering well. all my drains are out. had my first check up with plastic surgeon today. he is happy with everything thus far.

i have an appointment with breast specialist on Monday to discuss histology. i know they did an axilliary clearance on one arm and a few on the other one which we will be using for chemo.

my stomach skin still feels very tight. operation was 9 days ago, anyone else had this. feels like it will tear if i walk up straight. it is very uncomfortable.

Dx 4/12/2021, IDC, Both breasts, 6cm+, Stage IIIB, Grade 2, 11/24 nodes, ER+/PR+, HER2-

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