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October Surgeries/ No Need for Awareness, It's Reality!

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  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- I have been through over 5 months chemotherapy and you have to wait 3-6 weeks to have surgery after that. So of course I get 6 weeks till mine surgery. I know everyone want the 3 week as quick as possible but doesn’t make it any easier when you have to wait the full 6 weeks. It’s just the mental game to get through.

    Went to my surgeon on Monday and she said she would stage my cancer after surgery wonder how that works after chemotherapy for 5 months and the blue dye with sentinel node biopsies wouldn’t the chemo get rid of any small cancer there? I don’t know need to find something else to keep my mind busy.

    Hope your fill went well today!!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Marge, is your surgery next week? I am losing all track of time! I know they do pathology tests on the surgery tissue, but not sure what your surgeon means by "staging after surgery?" It will be interesting to get the results, but that will take a few days or up to two weeks, after your surgery to get pathology report.

    I just read my surgery report again and I didn't realize my expander is on top of my pectoral muscles. I thought he was going to place them under the muscles. I trust him, so whatever he thought was best is fine by me.

    The "first fill" appointment went well but I am so sore under my arm and under my breast. I guess that is normal. I go back on Monday for more. The doctor/PA, both agreed to extending my leave for two weeks. I feel better going back mid week in the middle of December rather than the Monday after Thanksgiving. I have no energy. I went to the store early this morning for a few items and by the time I got home I felt exhausted! When I am sitting, I feel as if I am back to normal, then I get up to do something and realize I am nowhere near normal yet.

    I hear you about all your questions about chemo and the sentinel node biopsies. Like I said, having breast cancer three times is like having it for the first time, three times. Each time is so different, different questions. Trying to navigate everything is exhausting!

    Speaking of which, I was glad to hear when I was first diagnosed, that I was assigned a breast navigator. I never met her. I was handed a folder with information, told to call if I had questions, she called to set up one of my appointments early on, but I never heard from her again. I kind of laugh now, wondering what a breast navigator does, as opposed to the wonderful receptionists at my surgeons' offices? No big deal, just something I thought of.


  • margecandoit
    margecandoit Member Posts: 150
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    maverickmom- yes surgery is in one week. It’s getting closer. Trying to keep my mind busy. Yeah I guess I will find out what the surgeon means by staging after surgery.

    I am so glad your fill went will and you get more on Monday that does sound like that could be a little painful. I am glad they are giving you more time off work. You need time to rest and get to feeling better.

    Interesting you to you to talk about the nurse navigator. I have talk to a couple ladies that loved theirs and how great they were. I never got anything like that but I do like the ladies at the front desk who alway know my name and ttake care of me.


  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Hi Marge! Glad your surgery is soon!!!!! You have been waiting way too long!!!!! I am curious, why did your doctor even send you for chemo in the first place? Due to Pr- or grade 3? If for the grade 3, I would think she would have scheduled surgery ASAP to get it out of you! I read once that the stage never changes. Unfortunately, I can't remember the details, but I will be interested to hear what your doctor says. Does she suspect there is more cancer in your breast other than the 1 cm IDC? I only heard of people getting chemo prior to surgery to shrink the tumor, but hey, as I stated many times, I am most definitely NOT a breast cancer expert.

    I feel I should know more than I do, but I don't, and I have a science degree, so I do understand the medical terminology. My own Dx's confuse the heck out of me! I still can't figure out why I need to be on Letrozole. I guess it goes back to the fact that I didn't need chemo or rads, so I feel my cancer the last two times I had it, (2019 and 2022), were not validated. It is weird to have them say I am free of cancer and then say, but you need to take this drug to prevent it from recurring. I really am better off when I just don't think about cancer at all! I can't wait to be done with all of this and only have yearly visits with my BS. I REALLY just want to get my life back and remove breast cancer from my vocabulary!

    I never met my nurse navigator, and honestly, wouldn't have called her anyway. It is weird because she called me one time to schedule me for a visit with the lymphedema therapist prior to surgery. I added that phone # with her name into my phone. I have received a number of calls from that number about different doctor visits etc, but it is never her on the phone. It must be a line just used by hospital staff???? When I read online about what nurse navigators do, I still can't help but think they sound like specialized schedulers and I don't see the need for them to actually be nurses, especially with a nursing shortage. Since I no longer have breasts, or cancer, I am thankful I will never need a nurse navigator, whatever that is! LOL

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- so I don’t full understand everything with my DX. So when I was had my biopsy done my breast surgeon sent it off to have a mammaprint done. I was coming in to decide on surgery and she got my mammaprint back that came back high risk and a Basel type It said to treat like triple negative. So I went from deciding surgery to starting chemo in a week and a half. It is grade 3 and aggressive I had a MRI that was clear and 6 months I had my mammogram and this showed up on. They said that was pretty quick. They also want me to take tamoxifen and verzenio which is for ER + breast cancer but they did some treatment like triple negative. That why I say I don’t fully understand. I am just following what they say. Maybe I shouldn’t but that’s all I know to do. I hope that made kinda since.

    I think it’s hard to not think of cancer when you went through it 3 time now. I would think it’s always there but I understand not wanting to think about it and getting in with life. I want to not think about it and get in with life also but it’s alway there and not sure it will leave. You have more experience so you would now better.

    Hope you had a good day!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Marge, listening to what our doctors say is the best we can do. Still, for me it is hard. My plastic surgeon is a lymphedema specialist and wants do mapping on my left arm when he does the exchange surgery. (takes out expander and puts in implant) Medicare won't pay for much if anything related to lymphedema, which is a big reason I don't wear garments or do anything for it. I really need to research the pro's and cons of even doing anything for my lymphedema at this point in my life. I can't take a chance that I would end up with massive bills right before I retire!

    Your Dx does sound confusing, and yes, I absolutely agree, you need to follow your doctor's decisions! That is what you are paying her for!

    Please stay in touch! I really care about you and wish you the very best outcome possible! I am very thankful for this community and all the support members offer. It would be so much harder facing all this alone!


  • margecandoit
    margecandoit Member Posts: 150
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    maverickmom- so do you have lymphedema or he trying to prevent it. I am not even sure I know what it is. That kinda stinks that they don’t cover it. I think if I Dr think you need it then they should have to pay.

    It’s so hard to do your own research too. I really don’t know how to do it and if what you google is that accurate. So hard to know what to trust. I even have hard time trusting Dr. I know some of my mom Dr were wrong and less desirable outcomes happen because they were wrong. That why I worry about my DX and it being confusing to me. I hope that they are making right chooses and me following them is the right thing to do.

    I will stay in touch for sure. It better to feel like your not all alone. I am also grateful to have a place to come and someone understands you.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    I have lymphedema. It occurred immediately after my surgery for IDC in 2003, when I had 24 lymph nodes removed.

    I am sure your doctor is doing what is best for you! Sometimes we just have to have faith in our doctors. So glad you will keep posting here!

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- So lymphedema is when your lympnodes get removed. I think I remember my mom talking about that. So she was real careful with her arm she had surgery on. Is that a issue with having a lumpectomy? Should I be concern about that after surgery or is that only with mastectomy?

    Food prep is done. Bras and some button tops are on they way. I guess I need to do some cleaning now. To be ready for Thursday. Hope you have a great day.

  • harley07
    harley07 Member Posts: 320
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    @margecandoit - there’s an excellent section on here about lymphedema. https://www.breastcancer.org/treatment-side-effects/lymphedema

    Perhaps this will answer some of your questions on lymphedema. Wishing you all the best with your surgery this week.

  • margecandoit
    margecandoit Member Posts: 150
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    harley07- thanks for the link I did a little reading a lot of information.

    Maverickmom- surgery day is tomorrow thanks for talking with me these last few weeks. I hope you are doing well. I will get through this and will let you know how I feel in the next few days.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Marge, I will be thinking of you tomorrow! You will soon be like me, seeing my surgery date in the rearview mirror! Surprisingly, I found it non stressful the morning of my surgery and pretty much ever since.

    I thank YOU for all the support you have given me! Of all things breast cancer related, this site is the real life saver! I honestly don't know how I would have survived mentally or physically without the support of this community.

    Please let us know how you are doing when you feel up to it! There are many here who care! You've got this!!!!!

  • maggiehopley
    maggiehopley Member Posts: 121
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    Hi Marge, hope your surgery went well!

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    I too am thinking about you Marge! I know you will post on here when you feel well enough to do so. We just can't predict how we are going to feel post-surgery. Sending you ((((cyber hugs)))) and good healing vibes!

  • margecandoit
    margecandoit Member Posts: 150
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    Thanks for thinking of me. I am still pretty sore and tried but I think all went well. Suppose to take the bandage off today nervous about that. Not sure I want to see what this all looks like and then wash and dry it seems scary to. I will press on and do it. I am still pee blue green this morning must have used a lot of dye on me lol. Then no bra for a month is going to be weird been wearing a bra since I was 9. Thanks for everything. Hope everyone doing well.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    So glad to hear you are on your way to recovery! Take your time and rest when you can! Time will fly by now that you are on the other side!

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- So the side with the cancer and node biopsy hurts a lot more the right side that was just the reduction. I am sure that is normal? Trying to reduce pain med and I feel more pain on the left side.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Yes, that is very normal. I think the pain from the node removal was actually worse than the pain from the breast. I am still sore under my arm.

    Keeping on top of the pain is key, and especially trying to use minimal pain meds. I have no idea why anyone would want to stay on opioids longer than needed as they come with their own issues, namely severe constipation, which can be horrible!

    When I do my exchange surgery with revision and mapping of my left arm, I am hoping the pain can be managed with tylenol only. We shall see.

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- so I went to the plastic surgeon today for follow up and the MA who was in the surgery said they to about 2 pounds out from each breast. I thought I was a lot smaller. She also said that everything looked normal considering what was just done and I wails be sore for awhile. I am going to keep working on getting off pain med. going to try none tomorrow except at bedtime. of course keep up with Ibuprofen or acetaminophen. Hope you are feeling well and ready for thanksgiving.

  • mavericksmom
    mavericksmom Member Posts: 1,268
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    Check with doctor before you take Ibuprofen because they don’t usually want you to take NSAIDs . Wow, two pounds is a lot! I bet you will notice your back feeling better assuming it was bothering you prior to Dx. There are so many downsides to breast cancer,but also some perks! Glad your appointment went well!

    I still wonder how I will ever have a normal looking breast, I am new to reconstruction with expander, then implant. Plastic surgeons are amazing, artists of the human body! I am very thankful for my PS!

    .

  • margecandoit
    margecandoit Member Posts: 150
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    mavericksmom- I can imagine that would be difficult getting reconstruction done. It seem really scary to me when the plastic surgeon was explaining it to me. I almost feel like I am a lot smaller than I was wanting to be but it is amazing what they can do. Even though I feel like I have frankinboobs.

    I did tell my dr I was taking ibuprofen said it was fine cause I wanted to get off the harder stuff. Man I had some crazy paralyzing nightmare dream last night. Got to get off them. Hope things are going well.

  • margecandoit
    margecandoit Member Posts: 150
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    maverickmom- went to the breast surgery today. I am doing good but still swollen. Got pathology and she got clear margin yay!! Also no cancer in my lymph node yay!! The only thing that was different was my er + went down to 20% from 45% and her2 is now in question it was neg and now they had to send it off for more testing. Not sure about how that works.

    How’s things going with your reconstruction going. You staying healthy? Did you get your mapping done?

    Hope your doing well.