Topic: 9 year Survivor DX again

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: May 22, 2022 08:30PM

Posted on: May 22, 2022 08:30PM

tedebarre wrote:

Hey Everyone. Sure don’t like being back here. I had DCIS 9 years, 8 months ago & have just been DX with IDC & DCIS grade 2 ER+,PR+(Low positive, HER2-, in the opposite breast from my prior DCIS. My quandary is…my prior DX was TNBC now it’s positive. Waiting on appt from Oncologist to see where we go from here. But it’s All Gonna Be Ok!

Dx 9/28/2012, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR-, HER2- Surgery 10/8/2012 Lumpectomy; Lumpectomy (Left) Surgery 11/11/2012 Lumpectomy; Lumpectomy (Left) Radiation Therapy 12/16/2012 Breast Surgery 7/5/2022 Lumpectomy (Right); Lymph node removal (Right): Sentinel Surgery 8/2/2022 Mastectomy (Left): Simple; Mastectomy (Right): Simple Hormonal Therapy 9/8/2022 Aromasin (exemestane) Dx IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2-
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Jul 15, 2022 07:24PM oldladyblue wrote:

Hi tedebarre, it is great that genetics aren't involved and your daughters can breathe easy. I had the same reaction when I found out. Sounds like things are in control for moving ahead for you.

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/10/2022 Arimidex (anastrozole) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Jul 25, 2022 10:23PM tedebarre wrote:

Kotchaj, I know! It doesn’t make any sense to me. No family history (guess future generations won’t have far to look for a starting point), no genetics, just a nasty draw of luck! But I’m still waiting on the oncotype results and I know it could be way worse. God’s got me, so I’ve got this! Now to move on to the new normal. Geesh I hate that term. I’m a stubborn mule when it comes to change, but I’m trying really hard to embrace what I know will be the new me, but still the old me! I have my DH, 2 DD & 7 DGC, and lots more family & friends, I intend to make many more memories with! So as is my Marine vet, son-in-law, says Semper Fi! Love to all y’all! 💗💗

Dx 9/28/2012, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR-, HER2- Surgery 10/8/2012 Lumpectomy; Lumpectomy (Left) Surgery 11/11/2012 Lumpectomy; Lumpectomy (Left) Radiation Therapy 12/16/2012 Breast Surgery 7/5/2022 Lumpectomy (Right); Lymph node removal (Right): Sentinel Surgery 8/2/2022 Mastectomy (Left): Simple; Mastectomy (Right): Simple Hormonal Therapy 9/8/2022 Aromasin (exemestane) Dx IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2-
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Jul 26, 2022 03:29PM jonib wrote:

I had a recurrence in 2016 after 8 years of being cancer free. The second time was much worse than the first emotionally. I had genetic testing done and there was no genetic link to my cancer although my sister was diagnosed a year after my first diagnosis. Genetic testing did find that I have a slightly greater risk of colon cancer than the general population. Stay positive and enjoy every day.

Two time breast cancer survivor. Recurrence after 8 years. First time 3 mm ER-, PR-, HER2+. Recurrence 4mm - triple positive.
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Aug 12, 2022 11:21AM tedebarre wrote:

Good Afternoon Pink Sisters. So surgery went well on 8-2. Have been for follow up 2 times now & am down to 1 drain. It will probably be with me for a little while longer. Still have staples & stitches and tons of soreness and phantom feelings. BUT…the Cancer is GONE! Still some “minor” residual DCIS, but No Cancer. Now on to AI & Oncologist will discuss that at appt on the 18th. *sigh*

Dx 9/28/2012, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR-, HER2- Surgery 10/8/2012 Lumpectomy; Lumpectomy (Left) Surgery 11/11/2012 Lumpectomy; Lumpectomy (Left) Radiation Therapy 12/16/2012 Breast Surgery 7/5/2022 Lumpectomy (Right); Lymph node removal (Right): Sentinel Surgery 8/2/2022 Mastectomy (Left): Simple; Mastectomy (Right): Simple Hormonal Therapy 9/8/2022 Aromasin (exemestane) Dx IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2-
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Aug 13, 2022 05:51AM oldladyblue wrote:

Woohoo tedebarre! Glad all is going well and cancer is gone!

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/10/2022 Arimidex (anastrozole) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Sep 24, 2022 02:07PM - edited Sep 24, 2022 02:07PM by swgeewi

I was diagnosed with a second primary BC in August, about 3 months short of my ten year cancerversary. Same as the first, IDC. Had a mastectomy last week. One sentinel lymph node removed showed micro-metastases. Meet with Oncologist on the 29th. My Surgeon thinks I'll have radiation. (Ugh! I was tired for 6 months last time around!) I guess I assumed I'd have chemo if there was lymph node involvement, but the surgeon said they'll check my Oncotype score for that. Due to change in my insurance I'm at a different place this time around, too. I think I'll get a second opinion at the University Hospital I was at ten years ago. I already checked with my insurance and as long as my PCP orders it, it will be covered. I was diagnosed with PsA last year. Im not sure if that figures into anything this time around. I'm working full time and can't really imagine going through treatment and trying to work. AI's made my liver panels sky rocket when I was on those. I was kind of hoping for some new medicines or therapies since 2012/2013. My oldest daughter who was 18 first time around is now a chemo nurse at the University Hospital. She was able to take FMLA to help me with appointments and such. (DH has MS). Good luck tedebarre! Sending positive vibes to all

I have loved the stars too fondly to be fearful of the night (Sarah Williams) Oncotype Dx 18. May 2013 breast LE Dx 11/6/2012, IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 11/28/2012 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Radiation Therapy 1/21/2013 Breast Hormonal Therapy 3/19/2013 Surgery 7/22/2014 Mastectomy; Mastectomy (Left); Reconstruction (Left): Free TRAM flap Surgery 9/15/2022 Lymph node removal (Right): Sentinel; Mastectomy (Right): Modified Radical Dx IDC, Right, 2cm, Stage IIB, Grade 3, 1/1 nodes, ER+/PR+, HER2- Radiation Therapy Chemotherapy Hormonal Therapy
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Sep 24, 2022 05:18PM mavericksmom wrote:

Glad I found this topic! I am on my third diagnosis with breast cancer. IDC in 2003, 2 lumpectomies, due to margins, chemo and rads. Dec 2018 diagnosed in same breast with ILC, treated with mastectomy with DIEP reconstruction. I was on Letrozole for 6 months but quit. I was refused a bilateral mastectomy at the cancer hospital I went to in Philadelphia because the surgeon said the policy there was not to remove a healthy breast. He said I could get a second or third opinion, but I was already in shock from getting cancer again after almost 16 years of being cancer free. I couldn't stand the thought of gathering records and disks and seeing another doctor. I thought I was already at one of the best facilities in the area. I was wrong. Thankfully I transferred all my records to a local hospital in July and saw a wonderful breast surgeon, oncologist and plastic surgeon (he specializes in lymphedema which I have) prior to the mammogram that started the whole diagnostic process. That is huge because it is the first time, I wasn't diagnosed first and then assigned a doctor.

I received an invitation to a survivor's event at the cancer hospital ironically to be held on the same day as my upcoming mastectomy! I wrote a letter to them telling them I couldn't attend because I will be having a mastectomy that day! I was professional, not angry, but I told them how their policy is affecting so many people. Not only does this affect me, my husband, children and grandchildren, but I work with special education students in a school, and they will be without support in many of their classes while I am out on disability. The worst part is it is their fault because they refused to allow me to have a bilateral mastectomy. I do have a strong family history, mother, two sisters and a cousin on my mother's side all had breast cancer! My letter to the hospital explained all that and it is my hope they will change that policy so no one else goes through what I have gone through!

I think there might at least be a chance for policy change because they wrote me and told me it was under review, and they will let me know in writing within 30 days. The letter was sent certified.

I did see a genetic counselor in 2020 and was tested for 54 gene defects. I had been tested for BRCA genes only in 2004, so I knew I wasn't positive for that.

I am still trying to wrap my head around all of this. Having it for a third time is like having it again.....for the first time!

It is just starting to feel real now. I had my pre-surgical appointment with my PS last week. I didn't realize that it will be an outpatient surgery, but I am actually glad, as I can do my own thing in the comfort of my own home. The only downside is no IV pain relief. At least no one will wake me in the middle of the night to take my blood pressure! I also have a phobia of hospitals, whenever I am in one, I get panicked! They don't know that, but just another good thing about it being an outpatient surgery! I messaged my breast surgeon and told him that since this would be an outpatient procedure, under NO circumstances will I stay overnight! I refuse to get hit will all kinds of medical bills because even if you stay overnight, it can still be considered an outpatient procedure.

As someone else said, I am much older now too, late 60's! I am also scared to death. I want to cancel the whole thing, but of course that would not solve my cancer issue! The only reconstruction choice I have now is with an implant. So I will get two drains and an expander. Oh goodie! Ironic because I wanted both breasts removed without reconstruction in 2019, but they would do that. They talked me into the DIEP surgery. I thought about going totally flat now, asking them to remove both my real and fake breast, but I went through so much after the DIEP surgery and I really like how my fake breast looks and feels. I heard from others that the implants are not nearly as good, so I have a feeling I am not going to like the end result of this surgery. Not much I can do about that.

And, as if having an arm twice the size of the other due to lymphedema from 23 nodes being removed in 2003, now, thanks to my former breast surgeon, I must have lymph nodes removed from my other side! I will just look really fat with two lymphedema arms! I might get lucky and not get lymphedema, but luck isn't something I normally have. My PS this time specializes in lymphedema and plans to do a lymphovenous bypass. He did tell me there is a chance he won't be able to do that. I am fully expecting a double whammy of lymphedema. Prepare for worst, hope for the best, right?

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Sep 24, 2022 09:15PM molliefish wrote:

I was diagnosed with a second primary in the opposite breast 3 weeks ago. Had a revision surgery last Tuesday since the margins weren’t clear. DCIS for now but waiting for the next pathology is ……….. uncomfortable. I’ve been through chemo once. I was ok to do rads a second time. I’m sure you are there with me. I get results on the 12th. Until then. Smile

Dx 5/24/2015, IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2- Surgery 6/8/2015 Lumpectomy; Lumpectomy (Left) Chemotherapy 8/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/9/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 11/9/2022 Whole breast: Right breast Dx DCIS, Right, 2cm, Stage 0, Grade 3, ER+/PR+ Radiation Therapy Whole breast: Breast
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Sep 25, 2022 01:00PM mavericksmom wrote:

I have my mastectomy on the 12th. Let's hope it is a lucky day for both of us!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Sep 25, 2022 01:30PM parakeetsrule wrote:

Mavericksmom, you DO have a choice! Whether you have reconstruction and what kind is always your choice.If you don't want an implant you don't have to get one. There are lots of us with only one boob and prosthetics are easy to use and often free! Or you could simply go flat like you wanted in the first place. (though I totally get wanting to keep the nice boob you worked so hard for!)

Whatever you end up doing, do it because that's what you want. You have choices other than an implant you already think you won't like.
Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Radiation Therapy 11/6/2017 Whole breast: Lymph nodes, Chest wall Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left)

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