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Topic: Any IDC/Stage 1/Grade 1/ES&PR+ Her2- ever had recurrence?

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

Posted on: Jul 5, 2018 07:07PM

Jons_girl wrote:

Hi Everyone:

I am wondering about something. I caught (thankfully) my tumor very early 3-4 mm, IDC, ES/PR+, Her2-, Grade 1, Stage 1. They don't really study people like myself with recurrence. So I am asking here....has anyone had exactly the same tumor characteristics as mine and had a recurrence???? Or is this something that rarely if ever returns? It had a prolif rate of 9%. So low proliferation.

Thank you in advance for your answers. I am mainly interested in people with tumors exactly like mine as stated above.

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Feb 6, 2019 10:32PM kksmom3 wrote:

Jon's girl, I too wonder how I got this! I lost 40 lbs 5 years ago and kept it off, I ate pretty healthy.......I am chalking it up to a cell replication mistake. Who knows? I am 61, and the dense breasts. When I go back to the oncologist in April, I'm going to ask about having U/S added to the yearly mammogram. Can't hurt to ask, they'll probably tell me no, but it would make me feel better.

They preach early detection, and then when you ask for it, they say you don't need it.......ugh........hope they're right about that. I have made dietary changes too, way more plants, and have stepped up my exercise. I should go 5-6 days a week and I was managing that before the weather turned nasty. I just joined the Y, and I'm going to make myself go at least 4 times a week. Thanks so much for the chat!

Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/1/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Feb 7, 2019 05:33PM Jons_girl wrote:

Hi kksmom3: Yes thank you for chatting!! Wow 40 lbs!! That is great! It is always so tough to take weight off and keep it off. So great job!

Regarding the ultrasound thing....and dense breasts. Since you know you are level 3 in density....you would qualify for a ultrasound. Your profile doesn't say where you live. So if you go to this map: https://www.areyoudenseadvocacy.org/dense the states who have laws passed.....with a level 3 you have a legal right to other form of diagnostic other than a mammogram, just so you are aware. So depending on where you live.....you should be able to get the referral for a ultrasound. I just wanted you to know that.

Yes I agree. They do preach that. And for many women mammograms would just great! But for others like myself, the mammogram missed my tumor. I even requested a copy of the CD of my mammogram so I could see the images myself! And I was shocked! You could see the stickers where the tumor was marked...but the tumor was invisible.

Great job exercising regularly! I do get some exercise because I have animals and land. But I need to be getting more exercise. A goal of mine!!

Have a great week and weekend!

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Feb 8, 2019 10:10AM KerLyn wrote:

I was happy to have found this thread! I wonder the same thing....too often these days honestly. Every time I cough, I wonder....every slight backache..I wonder "is it back, did it spread, did they miss it". I am almost through my radiation treatments, 25 of 30 today, so only 5 left, I'll be finished next Friday! Then I'm on to Tamoxifen for the foreseeable future. I feel the RAD fatigue and falling asleep is NOT an issue......however - staying asleep at night is a different story lately and the logical part of my brain fights with the fear of the unknown thoughts I have. I know the risk of recurrence is low, but none of this is not easy for anyone.

Dx 11/16/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/10 nodes, ER+/PR+, HER2- (FISH) Surgery 11/30/2018 Radiation Therapy 1/7/2019 Hormonal Therapy 2/28/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 8, 2019 07:31PM Jons_girl wrote:

Hi KerLyn! Thank you for joining the dialog here. Yes I wonder that too. Have had on going pain in my abdomen, ultrasound and MRI all state ok. But the pain continues. But I have to trust all is ok. Just guess I am getting older with aches and pains. I hope the rest of your treatment all goes well! No none of all this is easy on any of us, that is for sure!

Have a great weekend!

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 4, 2019 09:04PM UpstateNYer wrote:

hi kerlyn. May I ask you how you got your surgery so quickly after dx? I was diagnosed in early Feb. and soonest lumpectomy with IORT scheduled for March 20th. Waiting seems like forever. Needed consults with surgeon, radiologist and appts for savi scout placement and seminal node injection.

Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/3/2019 Lumpectomy: Right Chemotherapy 5/8/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 5, 2019 07:30AM Twelvestring60 wrote:

Hello everyone. I saw this thread and wondered if anyone started out as borderline her2? First, I was unequivocal her 2 and er+ and pr+.

re tested and it  was her 2 (.+2) borderline but er+ pr+.But yet positive?

Breast surgeon call last  night and said the final test from the surgery( Double msxtmy family history heavy) was Negative her2  +ER +PR.

Today I go back to the Oncologist who is going to explain everything. For Now cancel the port this Friday, My Surgeon made appt. just in case so there was no waiting. Now, and Oncotype test. results in 2 weeks or sooner. wow. Since Dec. 19th the ride has been crazy. 

Stage 1a, no nodes grade 2-3? I am getting confused now. but today should clear it all up. 

Just curious if anyone was a borderline on the her 2 test. Thank you guys.

Dorene (fresh outta crazy town forum hehe)


Dx 12/19/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 2/8/2019 Mastectomy: Left, Right Chemotherapy 4/2/2019 AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Mar 5, 2019 12:06PM Meow13 wrote:

Yes I was borderline her2 but FSH test confirmed negative and oncodx test confirmed negative as well. I took AI drugs 4 years.

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Jun 1, 2019 07:55AM bevemar wrote:

I have been reading many of the posts written regarding invasive ductal breast cancer. What is the KI talked about in many of the posts? I have not heard this from my General Surgeon who performed a bilateral mastectomy on May 20, 2019, lymph nodes were clear.

I am ER and PG positive as well as the HER2 positive Grade 2, Stage 1A. My cancer was 2mm and I am to see my General Surgeon every 3 1/2 months.

I should have another doctor to see as well, should it be a GYN? I am not sure at this point and it was not brought up by my General Surgeon. I am 73 years old and have posted my initial diagnosis on this site. I am scared and cannot help but worry about this type of breast cancer coming back somewhere else. I will be seeing an oncologist on June 7, 2019 for whatever treatment is decided for IDC. I also do not know anyone who has had breast cancer near my age, older or younger. I have no family where I live. My husband has early dementia, Parkinson's and Type I diabetes and 6 stents in his heart, I am his caregiver 24/7. I would greatly appreciate any suggestions, advice about what I have written.

bevemar
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Jun 1, 2019 08:14AM Jons_girl wrote:

twelvestring60: how’s everything going?

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Jun 1, 2019 08:45AM - edited Jun 1, 2019 08:47AM by Jons_girl

bevemar: Thank you for sharing with us. You've been through a lot! And needing to care for your husband as well 24/7....this is a great forum for support and answers from others who have walked the same path I have found this forum overall to be a very supportive place Others will more than likely respond as well we are here for you!

Regarding the ki-67 test. It is a test to tell the doctor and pt how fast the tumor is growing. Proliferation rate. Here is a link I found a bit of a explanation on this site:https://www.breastcancer.org/symptoms/diagnosis/rate_grade hope this helps.

I had a little different tumor. Mine was small too. But grade 1 and her2neg. I had a different treatment I chose. I had been seeing my onco doc and a breast specialist and saw them once every 6 mo. Having ultrasounds every 6 mo. Mammos don't work so well with my breast tissue due to my extremely dense breast tissue. www.areyoudense.orgI have been sticking to having ultrasounds. I may have mri as well down the road for complementary testing. But I'm switching now to seeing just breast surgeon (an associate of my breast surgeon) once a year with ultrasounds twice a year I think . Everyone has a bit different story and treatment.

Sorry for the book I just wrote🌺. I hope all goes well with yr oncologist appt. keep in mind that if that dr isn't connecting with you, you can always choose another oncologist. Chose one you like....

We are here for support your not alone

Blessings, Jons_girl.

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Jun 1, 2019 10:31AM Salamandra wrote:

Hi bevemar,

Are you being seen by a medical oncologist? With triple positive breast cancer, there are definitely drug options to help prevent recurrence.

Not all labs report on KI, and many doctors apparently don't find it reliable. I never received the KI from my biopsy. I think 2mm is too tiny for genomic testing, but I'm not sure and a medical oncologist would be.

You have so much on your plate! I wonder if some mental health care could be supportive for you? Or some kind of support group. It's a lot to manage and I'm all for leaning on whatever help you have access to.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 1, 2019 01:45PM bevemar wrote:

To Jons girl......I am not sure how to reply to anyone who has written to help and inform me about the IDC I had been diagnosed.

I am very appreciative to you and others who have posted suggestions, caring and understanding about my IDC breast cancer. I have an appointment with an oncologist on Friday, June 7th, 2019. I am honestly frightened the IDC may show up somewhere else in my body, bones or brain as I was told because any minute cancer cell can move and multiply.

Again, thank you so much to everyone for their concern, suggestions, caring and help.

beve

bevemar
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Jun 1, 2019 05:48PM - edited Jun 1, 2019 05:49PM by Jons_girl

bevemar:

I want you to know it's very normal to be concerned it (cancer) may return. We all struggle with that. But I think that's life after cancer—-or it is for me. Wondering if it will return is very normal thoughts. As time passes it does get better-those thoughts get a little more distant. When recheck times happen those thoughts come back. It's something we all live with maybe others will talk about how they deal with those thoughts

Hobbies or listening to music or whatever you enjoy doing is important I think. For me it is anyway😊. Make time for you. Maybe get a sub caregiver for a day or 1/2 day. Go to lunch with a good friend. Somehow try to de stress a bit. I have not always been good at that. But I am Learning to be better at that.

Let us know how your oncologist appt goes if you don't mind sharing.

Blessings, Jon's gir

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Jun 2, 2019 07:05AM Salamandra wrote:

I'm glad you have the oncologist appointment coming up! If they're a good doctor and a decent communicator, I bet you'll feel a lot better afterwards.

Yes, IDC *can* come back elsewhere in the body. That's why they treat it very seriously even when it's a tiny tumor like you had. But for most of us, especially early stage, it will not. The hard part is not knowing. It's a mental/emotional challenge for sure. But I agree with Jon's girl that for most people the stress and anxiety will get better over time, and if it's not, it's totally appropriate to get support/help.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 11, 2019 10:38PM swsw wrote:

Thanks for the links. My oncologist pointed out this is survival rate, not recurrence rate though. recurrence rate is much higher than survival rate

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Jun 11, 2019 10:42PM swsw wrote:

May I ask why you chose not to use Hormone therapy or radiation? Did your doctors give you green lights on that? Thanks.

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Jun 12, 2019 12:28AM - edited Jun 12, 2019 01:59AM by Jons_girl

swsw:

You made two posts above but I'm not sure who your directing your comments to? The survival rate/recurrence rate I'm not sure I spoke to that so I think perhaps you were replying to someone else on that.

Regarding my treatment decisions: Yes my oncologist supported my decision. He's been practicing for approx 30 yrs. I do also have regular diagnostics (every 6 mo)and check in with one of my doctors periodically as well as a yearly manual exam each year.



Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel

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