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CALLING ALL STAGE I SISTERS

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Comments

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited March 2018

    Becky ..wouldn't the arrival of that little bundle of joy on April 6th make perfect birthday present 🎁 for you !! 🙂

  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    Yes, Lucy!! It would be the BEST birthday present EVER!!!

  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    Well, today is the anniversary of my second diagnosis. My right breast was diagnosed on March 6 and my left was diagnosed on March 21, 2017. So today was supposed to be my last Herceptin treatment. I thought what a fitting way to close out the year. But when I saw my oncologist today he had decided he wanted me to finish out the whole 13 treatment cycle. He had originally cut me back to 9. I questioned him last visit about it and told him I was concerned about recurrence. He said since I have that concern he felt more comfortable having me finish out the 13 cycles. Maybe I'm being overly cautious but better safe than sorry. I had 6 rounds of chemo with Herceptin, Perjeta, Carboplatin & Taxotere and now what will be 13 rounds of Herceptin. I started chemo in April of last year and should finish up the Herceptin cycles in early July.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited March 2018

    Oceanbum:

    I agree--better safe than sorry. July will be here before you know it. ;)

  • Georgia1
    Georgia1 Member Posts: 188
    edited March 2018

    Best of luck OceanBum. Hoping the time goes really fast for you.

  • sheila888
    sheila888 Member Posts: 9,611
    edited March 2018

    Oceanburn ...What's the normal duration of herceptin ?

    When I got it with my first diagnosis they only did once a week for 52 weeks.

    Congratulations on your Anniversary and many many more

    Sheila 💛💛

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited March 2018

    Oceabum..yay for anniversaries 🙂..


  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    Thanks for the replies everybody! Encouragement always helps! I was naturally disappointed. I am SO ready to be done with Herceptin. But I do believe it's the right thing to do.

    Sheila, it's every 3 weeks for 13 cycles.

  • jons_girl
    jons_girl Member Posts: 461
    edited March 2018

    Hello. I'm new to the forum. It's great to have a stage one family here! I go for my next recheck in June. Seriously thinking of having a MRI this time. I have extremely dense breast tissue. They saw my IDC tumor on a ultrasound. (3-4 mm) but because of my tissue I'm thinking might be good for a yearly MRI. Not sure if I'm being a little paranoid or what.

    I'm very small breasted. Size A. So maybe MRI isn't needed.

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited March 2018

    Jons_girl ..Welcome !!! ..gosh it's so hard to know what to do for the best .😕....my IDC was 7mm...didn't show on mammogram or ultrasound ...only "appeared " after having mascetomy for what was meant to be a dcis diagnosis ...I haven't had a breast MRI ... hopefully someone else will come along with some thoughts .


  • keepthefaith
    keepthefaith Member Posts: 856
    edited March 2018

    JG, You might ask for a 3D mammo, if you haven't gotten one. It is supposed to be good with dense tissue.

  • Georgia1
    Georgia1 Member Posts: 188
    edited March 2018

    Hi there Jons_girl. Depending on your age I'd guess your doctors may be pro or anti 3D mammogram, as opposed to ultrasound. But I agree that 3D mammos are a good option for dense breasts -- my tiny ILC/IDC tumor was found on 3D super early and everyone said it never would have been caught on 2D. An MRI is more of an ordeal: blood test, dye injection, claustrophobic machine, etc. Plus some insurance companies won't pay for an MRI. So perhaps start by requesting the 3D mammo as keepthefaith suggests.

    And just curious: did you have radiation or get prescribed Tamoxifen?


  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    Hi jonsgirl! I had a 15 mm mass in my left breast that was not detected by mammogram because I had very dense breast tissue. When a 7.5 mm mass was discovered in my right breast my surgeon ordered an MRI to make sure we weren't missing anything. The MRI showed the 15 mm mass. They went back & looked at my last 3 years of mammograms to see if it had been missed.

  • snickersmom
    snickersmom Member Posts: 599
    edited March 2018

    Hi everyone,

    I am a Stage 1 Sister. I was diagnosed one year ago today. Woohoo! So does that count for one year? Or is it from the date of surgery? Anyway, what a horrible day that was! I had BMX on May 3, 2017 and chose no reconstruction. Just had scar revision surgery a nothing ago and feel much better. I have foobs I can wear or I can go au natural, whichever I pick. Most of the time I go natural but foobs do make me feel better about how I look, so I am glad I have a choice.

    I will be on Arimidex for at least another 4 years. Side effects aren't too bad and I can manage them. The worst is what it does to my memory. but I'm alive, so I try toconcentrate on that instead of the negative side.

    Hope you all have a good night!


  • meow13
    meow13 Member Posts: 1,363
    edited March 2018

    My side effects on AI drugs seemed to be cumulative. It got really bad on anastrozole at about the 2 year mark. Switched to exemestane and had other problems. Now I am off everything for about 2 years now doing much better.

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited March 2018

    Snickersmom .. I'm on Tamoxifen...I don't have many side effects ,except my memory is SHOT !!😯

  • jons_girl
    jons_girl Member Posts: 461
    edited March 2018

    Hi stage 1 sisters: Thank you for all your replies!💕

    Lucy: wow your story is amazing to me not having seen your tumor on mammo or ultrasound! Wow!!! Stories like yours are the reason I'm wondering if having a MRI might be a good idea. So glad they were able to take your tumor out!

    Georgia: I posted on another post about my treatment choice. And why I chose no radiation or tamoxifen. So hopefully you can find my answer by searching on my other post so I don't have to explain here as well😊Please respect my decision tho k? I did a lot of research and talking with my MO to come to my decision

    Oceanbum: yes your story is amazing!! I've heard a bit of your story on one of the threads I started. You are one of the reasons I think I am asking about whether I should have a MRI. I'm thinking it might be a good idea since I've not had one. I'm being diligent in making sure I have diagnostics. 🌺

    Here is my story I posted on another link (see below)

    🌸For those of you who suggested a 3D mammo.....it's a lie they tell us that 3D mammos see dense breast tissue. Not true. I have BIRAD 4 level density. Extremely dense tissue. I even asked for a copy of the DVD film to see my tissue for myself. You cannot at all see my tumor! Please don't let radiologists or gyn's tell you they can see dense tissue in 3D mammos. scattered density BIRAD 2 is possible to see tumors yes. But BIRAD 3&4 (heterogeneously dense and extremely dense)in most states are required by law now to notify women if they have these two BIRAD classes and suggest more diagnostics such as ultrasound or MRI

    Here is my story:

    Hi, I'm new here. Last May I found a lump by chance and went to have a manual exam at a local breast center. The nurse pract did a very thorough exam. She thought it was a cyst.

    She sent me for a diagnostic 3D mammo and Ultrasound back to back. Long story. But the 3D mammo saw NOTHING! I wish you could read my report! No abnormalities found!!

    If I had relied on the 3D mammo report and had no other diagnostics my tumor would NEVER had been caught so early!!

    Right after I had the 3D mammo I had a ultrasound. And it was SO obvious that it was cancer. They wanted me to go have a biopsy right away.

    Long story. But my tumor was caught at 3-4mm! Ultrasound is a excellent way to catch breast cancer very early!!

    I have what they term as "extremely dense breast tissue". BIRAD 4. Dense tissue shows up white on a mammogram. Cancer ALSO shows up white. That is why the denser your tissue is, the more difficult it is to see cancer on a mammogram, any mammogram 3D or not!

    I'm so thankful I had a ultrasound!! They do not cost a lot either! So I would highly suggest if you know you have dense breast tissue(it says on yr mammogram report what you have) tell your health professional you are demanding to have a bilateral breast ultrasound! It may save yr life!

    This website: (won't let me post the link). (Look up areyoudense dot org )will show you a map of where they have breast density reporting laws. Most states have laws now where if you have dense breast tissue legally you have a right to a ultrasound.

    I hope my experience helps someone.

    My maternal gma died of bc. My maternal aunt had lobular cancer diagnosis two wks prior to my diagnosis. Now I'm having ultrasounds every 6 mo.

    Advocate for yourself. So important!

  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    In my opinion my surgeon saved my life by doing the MRI. Had she not done it who knows what I would have been dealing with by the time a mammogram had detected the mass in my left breast. She will always be my hero!!

    If I've learned anything from all of this is you have to be your own advocate. It's your body. If something doesn't sit right with you, speak up. Ask questions. Research. Gather as much knowledge as you possibly can get your hands on.

  • jons_girl
    jons_girl Member Posts: 461
    edited March 2018

    I completely agree with you!!!! I question everything! And that has not always been easy. Sonetimes I feel like docs don't like you to question their knowledge. But I do. I've learned to not just take their answer. If anything doesn't sit right with me I question it. I'm thankful for this forum.

    And yes if that had happened to me that doc would be my hero too! You are so lucky to have a great doctor! I have one too. But not all doctors are like ours. So thankful for mine.

    Have a wonderful evening!

  • snickersmom
    snickersmom Member Posts: 599
    edited March 2018

    Oceanbum - are you done with your Herceptin treatments? Hope so! Seems like you could use a break.

    Lucy55 - Where in AU are you from? I spent 6 weeks in Sydney about 3 years ago and absolutely loved it. A dear friend who was a native of Sydney gave me the trip and I stayed with her. I spent time at Uluru, the GBR, and Tasmania and I loved every single minute. Her flat was in the suburb of Mosman and we could see both the Bridge and the Opera House from her balcony.

    My 3D mammogram picked up the spot in my breast, and the ultrasound confirmed the radiologist's suspicion. So for me, the 3D did its job.

  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    Snickersmom,

    We were diagnosed about the same time last year. My right breast was March 6 & my left was March 21.

    Unfortunately no, I'm not done with Herceptin. I went in last week for what was supposed to be my last treatment. But my oncologist told me he decided to order 4 more. At my last appointment with him I questioned whether it was wise to cut the treatments back to 9 from the original 13. His reasoning was because the chemo totally resolved the tumor prior to surgery. It made sense but I was still fearful. He said with that concern he decided to take it back to the original 13 cycles. So now I have 4 to go. I should finish in early July. I was disappointed that last week wasn' t the last treatment but I think it's the right decision.

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited March 2018

    Snickersmom... ...I'm from Brisbane Queensland...so quite a bit north of Sydney ..I'm glad you enjoyed your holiday in Australia !

    Sheila ..I just noticed we are on page 500 !!! Thanks for starting this great thread 🤗

  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    I should have my grandson sometime next week!! I'm still hoping for Friday, on my birthday!! They are inducing her next week!! She finds out Monday what day!! But please keep her and my grandson in your prayers over the weekend. She just spent 2 days in the hospital. Her BP was high and her platelets were low. They said she is mild pre-eclampsia. But they were able to get her numbers under control before sending her home. She is 36 weeks pregnant. They want to get her to 37 weeks before delivering. She is monitoring her BP and is on bed rest. Her Father-in-law is a medic, her Mother-in-law is a nurse, and her husband is an EMT. So she is in good hands!!

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited March 2018

    Becky ..how exciting ..sending up prayers and good wishes for a safe arrival of your grand-baby 😊 I hope your daughter makes it to 37 weeks . Just letting you know though my grand-daughter arrived at 36 weeks and was just perfect ..no complications at all .

    Hoping for a happy , safe Easter for you all !

  • oceanbum
    oceanbum Member Posts: 3,644
    edited March 2018

    Thank you Lucy!! I needed to hear that everything can be ok if she delivers early. I know it can. My twin nieces were born weighing only 2 lbs each. Little Scotty is already over 6 lbs. So I know everything will be good. It' still good to hear it!! You have a wonderful Easter, too!!

  • sheila888
    sheila888 Member Posts: 9,611
    edited March 2018

    Becky good thoughts and prayers..I do understand the frustration that causing to the family..

    I will add a candle on the top.

    We are going the same thing with my daughter she's 35 weeks pregnant......BP is under control at least that's what she is telling me.....They are thinking to induce her 1 week before ..

    We wait and see. Please keep us updated

    Sending hugs

    Sheila

  • sheila888
    sheila888 Member Posts: 9,611
    edited March 2018

    Safe Delivery💙💙



    image

  • sheila888
    sheila888 Member Posts: 9,611
    edited March 2018

    Lucy...I know we did good with this thread. Almost 15.000 posts wow

    Hugs to you

    Sheila 💛

  • farmerlucy
    farmerlucy Member Posts: 596
    edited March 2018

    So here is something I thought of the other day. Generally I avoid the mirror. I'm not sure how I got so old so soon. Then the other day I was looking in the mirror, and suddenly I thought about how thrilled my mother would be to see me in my late 50s, gray hair, wrinkles, scars, extra lbs. I have not seen her since BC took her nearly 53 years ago. She would say to me how happy she is that I made it long enough to become an old(ish) woman. That is all she ever wanted for me. My grandmother, too, would be so happy to see that woman who stares back at me.

    So - I'm going to wear that image with gratitude, pride and joy.

    How's that for reframing things?

  • keepthefaith
    keepthefaith Member Posts: 856
    edited March 2018

    farmerlucy, That's an awesome way to "re=frame things"! Our mind is a powerful thing, indeed. My Mom is 84 yrs old and continues to "complain" that "this is supposed to be the Golden Years". I try to remind her how lucky she is with all that she's been through....BC twice, heart attack, by-pass, diabetes, knee replacements, a couple of falls, on and on. She is still very independent, drives, etc. My son calls her the Bionic Grandma. Our perspective is so important. Thanks for sharing that bit of inspiration:). I think we all need a bit of re-framing at times!

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