Fill Out Your Profile to share more about you. Learn more...

9 year Survivor DX again

Tedebarre
Tedebarre Member Posts: 10
edited November 2022 in Second or Third Breast Cancer

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!

«1

Comments

  • rah2464
    rah2464 Member Posts: 1,192

    Tedebarre - sure am sorry to hear of your second round. Sending you huge hugs as you step back on the merry go round of doctor appointments.

  • moderators
    moderators Posts: 7,688

    tedebarre - We hate the reason you had to come back here... so sorry about your new primary diagnosis. Please, let us us know how your appointment goes and keep us posted with news of your new treatment plan. We're thinking of you!

    The Mods

    Edited by Mods to improve accuracy of response.

  • cathy67
    cathy67 Member Posts: 409

    tedebarre,

    Sorry to hear that you have to be back here, I wish treatment journey goes well.


  • susielen
    susielen Member Posts: 3

    I’m sorry you have to go through this again.

  • Tedebarre
    Tedebarre Member Posts: 10

    Thanks for your support everyone! MO said even tho IDC is “on the move” it hasn’t affected lymph nodes, but we’re doing PET scan next week to be absolutely sure! Had BRCA test today & should have those results when we get PET results. Surgeon is going to contact me before days end with consult appt—thankfully same surgeon I used 9 years ago. So long story short……not as bad as I thought, but worse than last time. Probably no chemo (that depends on PET too), but probably lumpectomy & rads! Happy day! 🥰


  • Tedebarre
    Tedebarre Member Posts: 10

    Wow! Things moved right along since I last posted. Didn’t get a PET, instead got CT & Bone Scan. Both showed No Mets! Surgery was scheduled for 5 July, dr did lumpectomy & took 5 lymph nodes. Now to wait for path results. Should have them when I go back on 14 July. Dang this pesky monster. *sigh* Y’all take care

  • Tedebarre
    Tedebarre Member Posts: 10

    So … the saga continues. 0/5 lymph nodes! Yay! But…..(isn’t there always?) margins are Widely Involved. Discussion was that we “could” re-excise, but since the tumor is larger than the ultrasound showed (3.5 cm -size of a 1/2 dollar) mastectomy was recommended. I made the decision that if that is the best route, we’ll do a bi-lateral mastectomy since this is my 2nd go around & I just don’t feel I can at 62 yo go thru this a third time. Again Good News—-no radiation or chemo either, still aromatase inhibitors, but no “hard stuff”…..*sigh* I’m scheduled for 2 August. 🤕❤️🩹😜❤️🤣😭🥴 current feelings…anyhow, thanks for listening.

  • oldladyblue
    oldladyblue Member Posts: 302

    Tedebarre , so sorry you are having the C monster back. I can understand your decision for mastectomy. Close or involved margins are scary, and if you did re-excision wouldn't they recommend chemo and rads again? I am finally feeling recovered from my chemo and would hate the idea of doing it again. My surgeon said we "could" do a re-excision as I had a close margin, but then said it wasn't necessary if I did chemo/rads/AIs. Problem is, AIs react badly on me, so I worry about that close margin and recurrence in the future. I can understand your decision for bi mastectomy and no chemo or rads. If you've been on AIs and are doing well on them, that's great. I wish you well with surgery and recovery.

  • Tedebarre
    Tedebarre Member Posts: 10

    Thank you LadyBlue. My surgeon feels with the bi-lateral MX he will get all the Monster. I do have an appt with my RO on Tuesday to discuss all the options, but it’ll most likely be aromatase inhibitors in the surgeons opinion. But I’ll post what I find out. I just never thought I’d be facing this C again. No family history & thankfully no genetics either. My girls can breathe easier!

  • kotchaj
    kotchaj Member Posts: 205

    Tedebarre-

    I'm sorry you're back and you've had some mixed dang the margins, results. I'd do the same as you and go with the bi-lateral mastectomy, too. Sending you some good vibes and healing thoughts. It still just floors me when this stuff jumps around. UGH.

  • oldladyblue
    oldladyblue Member Posts: 302

    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.

  • Tedebarre
    Tedebarre Member Posts: 10

    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! 💗💗

  • jonib
    jonib Member Posts: 85

    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.

  • Tedebarre
    Tedebarre Member Posts: 10

    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*

  • oldladyblue
    oldladyblue Member Posts: 302

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

  • SwgeeWi
    SwgeeWi Member Posts: 199

    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

  • mavericksmom
    mavericksmom Member Posts: 1,048

    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?

  • molliefish
    molliefish Member Posts: 650

    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

  • mavericksmom
    mavericksmom Member Posts: 1,048

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

  • parakeetsrule
    parakeetsrule Member Posts: 605
    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.
  • parakeetsrule
    parakeetsrule Member Posts: 605

    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.

  • Tedebarre
    Tedebarre Member Posts: 10

    Geesh. Since I last posted on here in August my recovery has been A L L over the place. After the Dr removed some staples & all but one drain…I was going back to see him on a Monday, that Sunday afternoon the incision on the right side opened up like the flipping Grand Canyon. I butterflied it together as best as I could & when I went in the next morning he scheduled me for surgery on Tuesday (August 23) for dehiscence of the wound. Was supposed to be outpatient, but when I came to in recovery the nurse said “we’re waiting on your room”….no, no, no….I’m supposed to go home! They said I’d just be in overnight for observation because they found that the wound was infected & had put a Wound VAC on me. Well “overnight” turned into one solid week. Staph infection so bad infectious disease Dr had to get involved to figure out what antibiotics would work on this staph. So over the course of the week I got a portable Wound VAC & a PICC line installed & Finally got to go home…now I’m feeling like Terminator— new parts & antibiotics by IV every 8 hours! Dr appts twice a week since 8-30. I thought I was doing so well…….until today…..went back to surgeon today (infectious Dr kept up antibiotics week-by-week) & he was not happy that the wound is not closing faster than it is….35 days & still not closed! So today I’m told that he is scheduling me with a Plastic Surgeon so I can get a skin graft to go back under this wound vac. I freaking wanted to scream! This will be my 5th surgery since 7/5! So I went home, cried, ranted, screamed & then took a nap. I am so exhausted with Dr visits, but know I’ve got to full steam ahead to get well. Y’all please take care of yourselves. If you even suspect a mild infection….get thou to the ER. This crap is nothing to mess with. But at least the Cancer is gone! 💗 stay safe…stay strong, Pink Sisters!

  • rah2464
    rah2464 Member Posts: 1,192

    Tedebarre God bless you - I am so sorry this has become such an ordeal. Infections like this are rare but they can happen. Did any of your medical team give any indication on how they thought the infection started??

    I hope you are able to get the graft quickly and that it takes well so you can finally begin to heal. I am so impressed by your tenacity and courage. My very best to you and hugs sister

  • oldladyblue
    oldladyblue Member Posts: 302

    Tedebarre wow you have been through so much! Hoping things go well for you now. Thanks for the reminder for taking care of ourselves.

  • mavericksmom
    mavericksmom Member Posts: 1,048

    Tedebarre, I too am so sorry you are going through all of this. Most likely you will never know where the staph infection came from, because it is everywhere. I too am glad for the reminder. I tend to think I can treat myself rather than bother a doctor. I actually worked in microbiology and parasitology years ago and I should know better, but I too, need a reminder every now and then. I really appreciate your advice!

    I hope things get better for you soon! Sending healing vibes your way!!!!

  • Tedebarre
    Tedebarre Member Posts: 10

    Thank You Ladies for your kind words of encouragement! So…….in the 2 months since I last posted about “Terry’s (that’s me) TaTa’s Tumultuous Trek” (that’s what I called my Breast Cancer Journal)…..I’ve had some really Good news. I was referred to the PS on Sept. 29. Had my 1st consult on Oct 3rd, Surgery was scheduled for Oct 10. I was still on the IV antibiotics 💉(wound up being on the antibiotics 10 weeks, every 8 hrs round the clock). Surgery was early in the morning , so I was home by 2pm. Funny thing…..for the 1st week I couldn’t see the skin graft because the PS had stapled the thick foam dressing to my chest….yep stapled that sucker all the way around like you’d upholstery a chair! 😳So being the good patient I am, I relegated myself to the recliner (thank God it has electric footrests!) and had to keep (as Elmer Fudd says) Vewy Still…because the T-Rex 🦖 couldn’t lift her right arm away from her side for a solid 7 days. I went back to see the PS a week later & he was very pleased. I, of course, couldn’t tell if it looked good or just gross 🤢. Went back twice more, once each successive week and on the 28th of October he said those sweet words….”Don’t come back for a month”! 🙂 So….today, November 29 was the month! And, Y’all, he broke up with me! 🤣😂🤣 Yep…told me until I wanted surgery to go full flat (I have 1 small dog ear on the left & 1 irritating, medium size dog ear on the right) Don’t Come Back! That was the best birthday 🥳 present I could’ve gotten (my birthday is Thursday coming up). So in short, or long…Thank You Ladies for all your sweet comments and encouragement and Thank You Moderators for allowing me to document my Trek here in this forum. This site has saved my sanity more than y’all know. 😜🤪😜 Please for the Love of yourselves…..take your health into your hands 🙌 proactively. I could show you some horror pics that show the reality of what breast cancer is & it’s not always pretty new boobs. Take Care of you, Beautiful Reader! You’re the only You we’ve got! 💕💗💕 Love y’all Pink Sisters,

  • oldladyblue
    oldladyblue Member Posts: 302

    Oh Tedebarre, Happy Birthday! Sounds like you did get a really good present being healed up and told to bug off until you want another surgery, if you do!

    You are such a good storyteller, I really enjoyed your humor, and am still smiling for you.

  • threetree
    threetree Member Posts: 1,159

    Just want to say that I really admire the way you are handling all of this, and so glad that this board could be around still, even if just a little bit, to offer you some support. I really don't think I could do what you've done, and really appreciate your sharing what you've been going through with the rest of us.

    I agree with OldLadyBlue - Your humor is to be commended through all of this.

    I wish you all the best of luck and hope you have a wonderful holiday season, now that the worst of your ordeal seems to be behind you.

  • justme1964
    justme1964 Member Posts: 12

    Hi there,

    4 years after diagnosis, just heard from the doc and positive nodes on the opposite side and the biopsy says carcinoma compatible with breast origin. doctor appointment tomorrow then PET Scan 12/2.. so hoping it is just confined to the other breast...

  • Tedebarre
    Tedebarre Member Posts: 10

    Thank you LadyBlue! If I can help someone else…ease their mind, pick up their spirits, or maybe make them pee their pants laughing at me….I’ve done my job! 🤪 Thank you ThreeTree…it’s been a long haul…and believe me I’ve gotta a lot of trunk (or tummy) or both 🫣 junk to haul around…not so much boobs anymore. 🤫😂🤣 Merry Christmas/Happy Holidays to you and yours too! 🎄JustMe1964… praying for you, Sister! The scariest part for me was the waiting…I am not a patient person. Deep breaths sweetie! I’m sending positive prayers this stinker is contained for you! 🤟🏻💗💕