How long safe to wait ?

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Jadedjo
Jadedjo Member Posts: 469
edited August 2018 in Just Diagnosed

I don't see my breast surgeon until the 8th,that doesn't include wait time for the tests he will send me for and seeing a plastic surgeon to see if I'm right and don't qualify for immediate reconstruction (if i were to do it at all it would be DTI and it doesn't look like they do that here and I likely don't qualify),add in wait time for the surgery itself and I'm looking at 3 months if I'm lucky  maybe more before anything even happens (I live in prairies Canada,things go by the speed of a lost drunken snail).

Question:how long is safe to keep a grade 1-2 tumor in a persons body before it becomes more invasive.

Cause that seems like way too much time to me for this thing to get worse and I don't even know the ER PR and her2 yet. Calling isn't going to help me all I get is there are no earlier openings and he is very busy.

Thank you.

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  • odat4me
    odat4me Member Posts: 66
    edited July 2018

    I am anxious as well to get things moving along and have the same fears as you. I found out a week ago Friday. My breast surgeon was away this week and I am going to see her Tuesday. Check out the book Breasts an owners guide by Kristi Funk (a well known breast surgeon in CA). She does write about wait time I think ideally you should get treatment going within 3 months of diagnosis there is a slight change with recurrence rate after that time period. I hope we both get what need ASAP

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited July 2018

    Jadedjo

    I keep checking on you. Glad that you are being proactive about preparations for surgery. I had a mastectomy, so I cannot comment about lumpectomy prep or recovery. When you know more about your type of surgery, then I could comment.

    I also saw you encouraging someone who just recently got diagnosed. You are awesome to support others, while you are still dealing with getting diagnosed. You are making a difference in the lives of others.

    Regarding your specific question about waiting, and the potential for spreading, you need to get additonal information about cell proliferation (e.g. Ki67%, Nottingham score). The more rapidly dividing are the cells, the more you don't want to wait. Also, if you are node negative, with high cell proliferation, it might make sense to have surgery sooner, if possilble.Take care

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  • TwinkleCat
    TwinkleCat Member Posts: 85
    edited July 2018

    Hi Jadedjo -- I am also in the waiting game! (You and me and odat4me were all hanging out in the "waiting for results" forum at the same time.) I got my biopsy results on 7/23, and I will see the breast surgeon, medical oncologist, and radiation oncologist on 8/1. Like you, I am a bit anxious about when this will all get started... I understand there is still more testing that needs to be done, so it feels like there is quite a lag between getting diagnosed and actually starting treatment...

    If it makes you feel better (and it did me!), I've talked with several women whose actual treatment didn't start until a couple of months after diagnosis -- and all of them had successful treatment. It seems like it's pretty typical.

    Odat4me -- I'm totally going to find that book and read it!


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  • Leatherette
    Leatherette Member Posts: 448
    edited July 2018

    Hi Jadedjo,

    Just to give you an example of a timeline...this was mine:

    May 5,2017, Mammogram, radiology said def., DCIS, suspicious for IDC

    May 19, Met with breast surgeon

    May 26, met with plastic surgeon -at this time, not sure if I would have lumpectomy or mastectomy, and would have maybe had immediate recon if I didn’t need chemo

    June 2, original lumpectomy scheduled, but couldn’t get MRI appt until June 4, so had to postpone

    June 4, MRI biopsy

    June 19, mastectomy (DCIS too big for lumpectomy, also still think there is IDC, but it was too deep for the biopsy to find)

    June 23, Mastectomy pathology report confirming IDC tumor deep in DCIS one

    June 29, met with Oncologist and genetics

    July 7, port placement

    July 10, echocardiogram because getting herceptin

    July 25, first round of chemo

    Objectively, looking back, it was probably a typical to fast timeline, but the time between the steps was always excruciating.

    Best,

    L.



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  • Jadedjo
    Jadedjo Member Posts: 469
    edited July 2018

    @odat4me

    So do I.good luck.

    @scrafgal

    Thank you. Good to know.

    @twinklecat

    Thanks and yes there seem to be a few of us in the waiting part of this forum.

    @ leatherette

    Yes I think that's the part that's bothering me.not knowing anything. Also the fact that things seem to take so long around here especially after the healthcare cutbacks.

    Thanks to all for answering.

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  • moth
    moth Member Posts: 4,800
    edited July 2018

    There has been research on this. This is a blog post by a breast surgeon summarizing two studies done on long term outcomes assessing delays in surgery and chemotherapy. He links to the studies as well so you can look at the original data.

    https://respectfulinsolence.com/2016/01/12/breast-...


    bottom line: "it's best to do surgery within about 60 days in patients not needing chemotherapy first,"

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited July 2018

    @moth

    Thank you for the answer and the link.

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  • odat4me
    odat4me Member Posts: 66
    edited July 2018

    Thank you for all of the posts! I am so thankful to have this community. It stinks more then words can say that any of us have rob go through this. I am nervous about tomorrow, finding out the specifics of my cancer. I keep flipping back and forth with feeling really positive and then thinking horrible outcomes.

    I survived childhood cancer 30 years ago, very aggressive bone cancer. I had the cancer out within weeks of diagnosis and thankfully after a year of chemotherapy I survived.

    Can I manage that again?



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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2018

    You can and you will odat4me. We are testaments of that.

    Diane

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  • odat4me
    odat4me Member Posts: 66
    edited July 2018

    thank you edwards750!

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  • odat4me
    odat4me Member Posts: 66
    edited August 2018

    I got some answers yesterday. Confused a little by what the surgeon said about receptors. She said it was what they want to hear. Looking forward to surgery next Thursday, lumpectomy. Part of me wonders about mastectomy. Still going to wait to hear about BRCA results too. I think it is good to try to get cancer out ASAP.

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited August 2018

    That's good odat4me

    Did you ask for a copy of the report?

    Sometimes the people on here can help you translate it.

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  • odat4me
    odat4me Member Posts: 66
    edited August 2018

    Thank you! I did get a copy of the report it is hard to understand! I have IDC too on the right. How do you get your diagnosis on your posts? My doctor also wrote 2 pages for me while she was explaining everything. She was very thorough but it was very overwhelming. I was glad I don’t need Chemotherapy upfront. I had chemo for my bone cancer in the 80s. If I do end up needing it I can deal with it.

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  • Jadedjo
    Jadedjo Member Posts: 469
    edited September 2018

    I think you either type it out whatever you need help understanding  or cover up your personal info and take a pic of it?

    The second to last symbol is for adding  pictures but am not totally sure.

    Best idea is make a new topic in One of the threads with "need help understanding report"or something similar so it's up there where everyone can see it and hopefully provide answers.Hoping  no chemo at all cause once in your life  was bad enough and all will be well. 

    Blessed be.

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  • JoE777
    JoE777 Member Posts: 628
    edited August 2018

    there are so many variables to learn so a path to healing can be charted. It's natural to get it out but sometimes other steps have to be taken first to plan for the best outcome. Hugs

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  • moth
    moth Member Posts: 4,800
    edited August 2018

    odat4me - there are two ways to get your diagnosis to show on your posts.

    1) click My Profile on the top right & fill out your diagnoses & treatments there, then return to the community board part & in the left side, click Settings, & then scroll down to the bottom & set all those to public; they will appear automatically.

    or

    2) in the Settings page of the community board you can scroll down until you get to Signature, click edit, and then just type them there.

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  • odat4me
    odat4me Member Posts: 66
    edited August 2018

    Thank you!

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