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

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Comments

  • kksmom3
    kksmom3 Member Posts: 101

    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!

  • jons_girl
    jons_girl Member Posts: 461

    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!

  • KerLyn
    KerLyn Member Posts: 1

    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.

  • jons_girl
    jons_girl Member Posts: 461

    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!

  • UpstateNYer
    UpstateNYer Member Posts: 331

    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.

  • Twelvestring60
    Twelvestring60 Member Posts: 65

    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)


  • meow13
    meow13 Member Posts: 1,363

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

  • bevemar
    bevemar Member Posts: 5

    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.

  • jons_girl
    jons_girl Member Posts: 461

    twelvestring60: how’s everything going?

  • jons_girl
    jons_girl Member Posts: 461

    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.

  • salamandra
    salamandra Member Posts: 751

    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.

  • bevemar
    bevemar Member Posts: 5

    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

  • jons_girl
    jons_girl Member Posts: 461

    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

  • salamandra
    salamandra Member Posts: 751

    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.

  • swsw
    swsw Member Posts: 2

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

  • swsw
    swsw Member Posts: 2

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

  • jons_girl
    jons_girl Member Posts: 461

    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.



  • Natural
    Natural Member Posts: 5

    I am older but pretty much same dx. My K1-67 was 8%. No oncotype but awaiting Mammoprint results. 64 at dx which was abt 5 months ago. I am still choosing treatments. I had bilateral reduction for surgery about 6 weeks ago. I found info in a NIH study and BS said he can do this surgery. Size Triple D to about B now. I am very happy with outcomes and BS said will not need radiation even if radiation oncologist says I do. And RO does want to do whole breast AND axillary. My two sentinel nodes were negative. I really respect my BS and his knowledge and expertise. The radiation for breast cancer is not up to date and if I were to do radiation, I would go somewhere else like MDAnderson. My BS and I have Plan B if recurrence: lumpectomy with intraoperative radiation (if appropriate and I would need to go somewhere else). Re estrogen blockers, still doing lots of studying. BS has suggested low dose Tamoxifen. I have arthritis already with one knee replaced 3 months ago and the other in 1 month. Supplements and diet to reduce estrogen? For me, no more wine, ground flax muffins = 32 grams per day, lots of veggies and fruits, no red meat, grape seed extract, indole 3 carbinol, multi vitamin and calcium, magnesium and D3 supplement Will it work? QOL is so important to me. I think I want estrogen levels in a couple of months. Take care Everyone!!

  • jons_girl
    jons_girl Member Posts: 461

    natural: so sorry I haven’t replied til now. Sounds like you have a good BS and a plan going forward. I think it’s so important to have a great BS and team. Hope all is going well for you since yr post.

    I haven’t done tamoxifen. For me, that was the right choice. If it returns I won’t regret my decisions. (No rad no tamoxifen). Next month will be my official menopause status. If no cycle next month. 😊.

    Hope everyone has a wonderful aeekemd

  • rosecal954
    rosecal954 Member Posts: 11

    Hi Jons girl: I had similar diagnosis as you IDC, Stage, 1, grade 1, 1cm. ER+PR+HER2- back in Sept. 2013. Had lumpectomy and radiation, no Tamoxifin- my choice. I did have a few isolated cancer cells in one lymph node. My Onco Dx number was 21, had no chemo. NED for 6 years and recently had a recurrence in Feb of this year, DCIS, grade 3. Micro-calcifications picked up on mammos, had 2 stereotactic biopsies and now mastectomy scheduled in April. This came as quite a surprise to me. I really didn't think I would ever have a recurrence, but we all know these cancer cells are sneaky. An interesting comment on the first biopsy report that the atypical cells might have been radiation induced. Interesting! I guess I'm in the minority of having a recurrence with a Stage 1, Grade 1 - I really don't see very many. I wish you good health. Try not to worry. I know that isn't as easy as it sounds. Great you are getting regular checkups.

    Carol

  • voraciousreader
    voraciousreader Member Posts: 3,696

    jons girl...annicemd, years ago, started a thread.,,stage 1, grade 1, premenopausal. The thread has been going strong and many of us continue to chime in and report that we are doing well. Speaking for myself, in February, I celebrated 10 years NED. I do realize we are young, so our chances of recurrence and/or new primary are possible...but, with that said...there are so many other illnesses that can strike us...so...we just need to carry on with living.


  • jons_girl
    jons_girl Member Posts: 461

    Hi Carol:

    Thank you for sharing your story. Wow I’m so sorry to hear about yr recurrence. You are right that is pretty rare with original dx stage of 1 I think. I hope all goes well for your treatment. Yes yr right cancer is sneaky for sure. Sending a hug your way. I hope all goes well.

  • jons_girl
    jons_girl Member Posts: 461

    voraciousreader:

    I will be officially in menopause next month if my cycle doesn’t happen. I nearly went a year without cycle last year but of course started a cycle the day before a planned vacation. Ugh. Lol. I think I was within 3 or 4 months of having a cycle free year last year. I think I had one cycle only this past year. So next month I will be officially in menopause. Yey for me. Lol.

    Your right there are many other diseases that can strike a person. I love each day to its fullest. Cancer taught me that every day is precious!!

    Congratulations for being 10 yrs NED!! That’s so wonderful! Thank you for sharing your story.

  • Ileepak
    Ileepak Member Posts: 21

    Thank you ladies. I am still struggling with taking Tamoxifin again. The side effects were brutal for me, and I am not a complainer . . . I usually suck it up and keep my mouth shut. I had everything from constipation . . . leg pain waking me up at night . . . to my hair falling out in droves and all the in-betweens . . . it became very hard for me to function . . . I work in a hospital with patients every day . . . I have to be able to do my job and do it well. I stopped taking it last September after being on it for about 5 months . . . now I struggle with the worry of a recurrence. My oncologist suggested I take half the dose from 20 to 10 . . . but I have been dragging my feet . . . I am sure that I will have the same side effects? I have been taking Rosemary extract and looking into other herbs? Although, working in the medical field, I know the important of medicine . . . and I feel like I am just grasping at straws. I am 52 . . .was always in good shape . . . . I don't drink or smoke? I keep hearing my grown daughters begging me to take the Tamoxifin . . . . they just want me to live . . . my 21 year old said "I don't care if you are bald forever . . . I just want you here". The struggle is real lol! God bless you all!

  • summerangel
    summerangel Member Posts: 182

    lleepak, what was your diagnosis? I also had a lot of trouble with Tamoxifen, it ruined my quality of life. I did try 10 mg but eventually all of the side effects came back. I ended up only taking it a total of about 4 months. However, my diagnosis was grade 1 tumors, low oncotype (on the one they tested) with no lymph node involvement and I had a BMX, so my risk of recurrence is very low. My oncologist gave his blessing to quit. As you can see, it's been 5 years, no recurrence.

  • jons_girl
    jons_girl Member Posts: 461

    lleepak: I don't know what yr diagnosis was...IDC or ILC and when you were diagnosed. What yr stage was and what your grade of tumor was. How large tumor was? I just turned 53 and I chose never to take tamoxifen or have radiation. I had surgery tho. My MO supported my decision. My tumor was small. And low grade. No recurrence. I just had my 3 yr anniversary of my surgery this wk.

    I do try to stay active and eat well

    For me, QOL is really important too.

  • Ileepak
    Ileepak Member Posts: 21

    Dear SummerAngel and Jonsgirl . . . Thank you so much for your input! It puts my mind at ease a bit! I feel like I am between a rock and a hard place. SummerAngel . . . that is go great that you made the 5 year mark!!! And Jonsgirl . . . also so great that you made your 3 years anniversary . . . why did you decide to never take tamoxifen . . . I had invasive ductal carcinoma with tubular features . . . tumor size was 0.7 cm . . grade 1 . . . estrogen and progesterone positive . . . nothing in the lymph nodes . . . Thank God. HER2 was 2.6 millimeters so since it was such a small amount, my MO opted for no chemo . . . . I had a left lumpectomy February 1, 2019 with radiation and then they wanted me to do five years of tamoxifen. And as you see I started it and I am not a complainer . . . I'm Irish . . . lol . . . . you learn to keep your mouth shut and suck things up but I was having such a hard time functioning on it . . . . and then losing my hair just sent me off the deep end . . . . no answers . . . when or if it would stop and if my hair would come back and come back to stay??? . . . that was the last straw.

  • jons_girl
    jons_girl Member Posts: 461

    Hi lleepak: My tumor was 4 mm. I didn't want side effects. And my recurrence chances didn't change that much for me to take it. So I didn't. And I chose not to have radiation because again same thing.....it was so small and only grade 1. Also if I chose to have radiation and it returned I was told I would have to have a mastectomy not a lumpectomy. I am trying to keep my breasts. So I chose no radiation. But again my MO supported my decision based on the tumor testing....grade and also the stage. No lymph nodes were involved either. So he supported my choice.

    HOWEVER.....I am very vigilent of having every 6 mo a diagnostic done. In my case I have very dense (extremely) breast tissue. They could not see my tumor on the 3D diagnostic mammogram they did in 2017. They DID see it on ultrasound. So I usually have one ultrasound a year at least. I have been having them every 6 mo. But my breast doctor wants me to have another mode of diagnostic as well so I am going to add that. I am very vigilent though making sure I have a manual exam by a doctor every year and having diagnostics every 6 mo. For me that was the right choice. But every tumor is different and we each have to choose the right decision for us.

  • Ileepak
    Ileepak Member Posts: 21

    Yes, I understand. My breasts are very dense as well and the sonogram picked it up . . . and because my tumor was so high on my chest . . . it wasn't on the mammogram screening . . . . remember our breast tissue goes all the way up our chest . . . not just the breast itself . . . my tumor was so high on my breast the sonogram caught it . . not the mammo. Good luck to you! All the best.

  • jons_girl
    jons_girl Member Posts: 461

    Thank you! I hope all goes well for your recovery. Have a wonderful week

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