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August 2022 Surgery...Anyone else out there?!

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serendipity09
serendipity09 Member Posts: 769

Starting this thread as I'm sure others are scheduled for surgery in August.

I'm scheduled for DIEP on August 25th. Had BMX Sept 2020 with immediate reconstruction with TE's, had my exchange to implants July 2021 and diagnosed with a recurrence a few days later. Did 25 rounds of radiation Sept/Oct 2021, to which my newly placed implant did not like. Which brings me to now and having the DIEP.

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Comments

  • lw422
    lw422 Member Posts: 1,410
    edited July 2022
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    Hi Ivy!! I'm not having surgery but I thought I'd stop by and wish you well. I hope your surgery goes well and your recovery is fast and easy! My mastectomy will be a year ago on August 23... my how time flies when you're trying to stay alive!! Take care, girl.

  • vagueowlet
    vagueowlet Member Posts: 1
    edited July 2022
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    Hello! My surgery is NEXT WEEK. I'm officially becoming an Amazon! I'm having a modified radical mastectomy with no reconstruction: since I have IBC, my oncologist wants me to heal as fast as possible so I can go right into radiation. I'm moderately terrified but am choosing to cover it up by being annoyed about it. I live with my brother and my dad and I'm worried about how they're going to cope while I'm laid up. I'm also worried about my cats: my instructions are that they can't sleep in my bed until I'm fully healed and they are going to freak out. I'm also scared about lymphedema and general healing. I'm very lucky in that I've never had any chronic illnesses or incapacitations to deal with, but it also means I don't know what to expect.

    I'm hoping to have reconstruction eventually, but I have to wait until a year after my radiation finishes. I'm going to miss Righty: I keep telling her it's not her fault. Hopefully I'll be up to knitting during recovery because I hate being bored.

  • trippositive
    trippositive Member Posts: 21
    edited July 2022
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    Hi All, I’m hoping for some insight on a double mastectomy, nipple conserving. Side effects? Length of time to heal? Reconstruction with fake breasts? I’ve always been against fake tatas, I hate the way they look. I’ve had a year of lumps, numerous mammograms, ultrasounds, and MRI’s along with biopsies in all 3 forms. The year was full of anxiety, depression, more anxiety, one deep breath and then it started allllll over again. I see the surgeon next week and don’t know how I feel about it. Any insight is appreciated

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Lw - thank you!! Yes, time sure does fly by. It's been almost a year since we "met." So glad (not the circumstances) to have "met" you! I hope you are doing well!!

    Vagueowl - I remember feeling the way you do. It was not as bad a I thought it was going to be. Recovery went very smoothly for me. Will your brother and father be able to help you? Or are you their caregiver? Be sure to have everything within reach, not high up. LE is a constant worry for me, but thankfully I don't have it. I will say, once you are given the all clear, go to PT and do stretches on your own. I think that's what has helped me.

    trippositive - I had skin sparring, but they could not save my nipples. As I mentioned above, the recovery, for me, went well. I only had to take Tylenol after the 2nd day only because I was still at the hospital (if I recall correctly). The drains were more of a pain, but in the sense that they were a nuisance. I had two that were removed just four days after surgery, one the following week and the last one at the five week mark. As I told Vagueowl above, put everything within reach. You will not be able to lift your arms.

    As far as healing, that will take a while, I think I was feeling as "normal" (whatever that is) by the 6 week mark. Everyone is different and you will have your ups and downs. The best thing you can do is listen to your body.

    I wasn't happy about having to have implants either, but going flat was not an alternative, for me personally. I didn't want to go through a DIEP so I decided on the implants. I don't like the way they feel and didn't from the beginning, but I could deal with it. They did come out bigger than what I would've liked, but that will all be fixed with this next surgery. Radiation is what changed things for me and especially on my cancer side. The radiation has caused my skin to tighten and the breast hurts.

    Another thing I found that help me was that I communicated very with my surgeons and they with me. I trusted them and still do. That makes a huge difference.

    The best advice I can offer both of you is to be kind to yourselves, it will make a world of difference. The anxiety and the depressions of it all can be so consuming.

    You have found a great place for support. We'll be here for you throughout all of this.

    You ladies have got this!!


  • moderators
    moderators Posts: 8,286
    edited July 2022
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    Welcome, vagueowl! We're so glad you've found our community, we hope this can be a source of support and encouragement for you. We'll be thinking of you as your surgery draws near!

    The Mods

  • serendipity09
    serendipity09 Member Posts: 769
    edited July 2022
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    Vagueowlet - what day is your surgery?

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Vagueowlet - wishing you nothing but the best possible outcome and a very speedy recovery. Please let us know how you're doing when you can.

  • Blinx
    Blinx Member Posts: 82
    edited August 2022
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    vagueowlet -- good luck with your surgery. I'm curious why your cats can't sleep with you. Do the docs think they'll sleep on top of you? If so, there's a post surgery pillow thing you can get on Amazon that might help. Cats can be a good destressor and would help you to get to sleep (which is an issue that first week, and with drains in).

    Trippositive -- it IS a long and challenging year. I felt normalish 4 weeks after my BMX. I opted to go flat. If you're not sure about implants, you don't have to get them right away -- they can be done later. I had issues with already radiated skin, plus I was concerned about the length of surgery.

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    blinx - can I ask what the issues were with your radiated skin? I'm meeting with my PS in a couple of hours and that is one of my concerns. Wondering if it's too soon. I finished rads last October. My skin has healed beautifully, at least on the outside. I'm terrified of what happens when they cut into me.


  • Lisa_RN314
    Lisa_RN314 Member Posts: 3
    edited August 2022
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    Hi, I am scheduled for DIEP flap reconstruction on 8/26. My BMX was 8/2021 also with placement of tissue expanders. My original plan was implant reconstruction. Went through 5 weeks of post mastectomy radiation then had to wait a minimum of 6 months before reconstruction. In that time my PS left and I decided not to go with implants because of the increased risk of complications due to radiation. Found a new surgeon and I'm looking forward to getting rid of these expanders!! Best of luck to you all 💕

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Lisa - you're DIEP procedure is one day after mine. We can compare notes. :)

  • Blinx
    Blinx Member Posts: 82
    edited August 2022
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    Hi serendipity -- I had whole breast radiation 15 years ago. The skin may have been a little thinner. The real problem was what was underneath. I should have said issues with the breast tissue. Part of it near the fold had hardened -- this wasn't removed. The surgeon said the rest of it was more challenging to cut through and remove -- it was a different texture than the unradiated breast. I had met with a PS and he would have given me implants if I wanted them. Good luck to you!

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Blinx - thank you! That's what I'm afraid of...what's underneath. Everything looks good, but certainly does not feel that way.

  • mavericksmom
    mavericksmom Member Posts: 1,242
    edited August 2022
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    Hi everyone, I have some questions as well about reconstruction but not something most of you can help me with. But, I can hopefully give some of you insight on DIEP.

    My breast cancer journey short version: 2003, IDC, treated with two lumpectomies, chemo and radiation.

    2018 (November)biopsy same breast, ILC, followed in Jan 2019 with Mastectomy of one breast. *Those who know me here know I went to a well know cancer hospital and was denied the double mastectomy I wanted. I could have gone for other opinions,but wasn't in a good head space at the time, pretty much in shock at having cancer again almost 16 years after first, so I didn't do that. I have let go of all that, I have a wonderful breast team at a local hospital and I am in very good hands!

    But, as for DIEP. It was one sided reconstruction. It was like having three separate surgeries at one time. I was not prepared for it, but who is fully prepared?

    I will tell you, the incision is from hip to hip! The belly button is moved up to a more normal position. (Not to get off track but I always wanted to know why they do that in women like myself. My gynecologist said it was to "make me look normal" to which I said, "for who, doctors?" I am in my 60's, will NEVER be seen in public in any clothes that show belly button. So why??? I am wondering if it has something to do with blood supply? If only for cosmetic reasons, they really should ask the patient because I know I am not alone thinking I could have done with one less surgery!)

    Then there is the mastectomy which is reconstructed with the tissue from between your hips. Personally, my doctor did a great job and I am pleased with it.

    Here is what they NEVER told me: When they told me my previous radiation (I had been burned badly in 2003, not just real red but blister, tissue sloughing) might make healing "a little" more difficult! Difficult???? It was a nightmare and my only support came from my visiting nurse! I didn't come close to healing until the end of July that year, so 7 months! I am not sure what I experienced was normal, but in the end it was worth it. If you have areas of breast tissue that get a thick black scab type feature, ask your doctor or nurse about using a special debriding cream, I think it is called Santyl Cream. It is prescription and is pricy ~$75-$100 so make sure to check with your insurance first. Anyway, that made everything go faster. I didn't use that until about 3 weeks or more after surgery, so it isn't something you would want right away.

    NO ONE PREPARED me for how hideous I would look after surgery, so I am giving you warning. I had three or maybe 4 drains, definitely one on either side of my hip and one for my breast, I don't remember if I had another for the bellybutton, but I don't remember one. Then on either side of my hip there was a "new swelling that looked like a boob! Seriously horrible. I cried. I never had a great figure, but I never thought I could look worse and I did! Please know if this happens to you, it is temporary and will get better with time. They might be the "ear flaps for reconstructing nipples, I don't know, but whatever, they will look more normal with time. The belly button will look more normal as well so don't worry!

    It is a long surgery, mine was 8 1/2 hours, but I am happy with the result. I never had the nipple done, but that was for other reasons.

    Definitely get a "drain" holder to wear in the shower. They might give you one, I got one, but you can buy on Amazon.

    I wish you all well!

    Now my issue is that I have been diagnosed with breast cancer again, my third time, high grade DCIS with microinvasion, and will get a mastectomy. I don't know what kind of reconstruction I can get now, so I will need to wait until I speak with the plastic surgeon. My husband and I are meeting with the breast surgeon this week to go over treatment plan. The only thing I know is that I will have a mastectomy, due to the fact that I have a very high incidence of breast cancer in my family and my surgeon said, before I had my recent mammogram, that due to my past history, he would have recommended a double mastectomy in 2019!

    Oh, I forgot one thing. If you are heavier set, prepare to have a "muffin top!" My hip area is great, like a tummy tuck! Above that, not so much. I have accumulated fat that now looks way more pronounce than it did before the "tummy tuck" surgery. It took time getting used to not having a defined waist!

    One last thing. I have feelings in my reconstructed breast from time to time, not bad pain, but twinges. I also had pseudo pain in my "nipple." That only happened a few times, but the first time I thought, "wow, my nipple hurts, wait, I don't have a nipple!" It wasn't bad pain, just feelings I didn't expect to feel.

    Again, I am glad I had the surgery and would recommend it.






  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    mavericksmom - thank you for sharing your experience. I met with my PS on Wednesday and everything you say above, more or less, is what was explained to me. She wanted to make sure I was prepared emotionally for what was to come in terms of the DIEP and my appearance as I had a difficult time emotionally after my BMX (immediate reconstruction with TE's).

    I will have five drains as I'm having both breaths reconstructed. I will have dog ears as I have wide hips. I will require another surgery to fix those and other cosmetic issues as needed in November.

    Like you, my skin blistered and slothed off after radiation. I never thought I would heal from it, but thankfully, one morning I woke up, about a week and half after my last rads session, and the healing process had begun. So not quite your experience.

    I do get phantom nipple pains when I get cold, it's such an odd feeling.

    I hope you get an answer to your question regarding what your options for reconstruction are. Please come back and let us know what the surgeon tells you as I'm curious and it would be good to know. I hope everything goes well for you! <3



  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    This thread is quiet. I guess that it is a good thing; not many surgeries this month.

    Posting to bump up the thread in the event someone is having surgery and would like to join

  • mavericksmom
    mavericksmom Member Posts: 1,242
    edited August 2022
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    Hi Serendipity! Isn’t it weird waiting for surgery? It is for me. Sometimes I forget I am going to have major surgery soon, don’t think it will be in August, if not, definitely in September. It is kind of hard to prepare for because I feel really well right now. How do you feel? I have moments of feeling very positive and other times I just wish it was over! At least you know what surgery you will have. I am on the “waiting wagon” until I see my plastic surgeon on Wednesday.

    Please stay in touch!

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Mavericksmom - It is weird waiting. I don't like it. I feel the same as you. My surgery was scheduled back in March for now in August, which gave me way too much time to think and change my mind, lol. I'm anxious about the surgery and just hope that it comes quickly and that the first month of recovery goes fast and quick. I made a list of Netflix shows/movies I want to watch while I'm at home; I have a magazine of puzzles that a friend gave me and a few books I bought thinking I would read them while I was in PR these last few months; that didn't happen, so I saved them for recovery.

    I feel the best I have since before April 2020. I finished my last treatment of Xeloda in June, so my body has started to get back to normal, what ever that is.

    I will def keep in touch. And you do the same.

    Have a great night!!



  • kbutler1092
    kbutler1092 Member Posts: 1
    edited August 2022
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    Hi, I was diagnosed in January with IDC advanced breast cancer on my left breast. I knew something was wrong because I had an inverted nipple but no one could find anything due to me having dense tissue. That was my first mistake of not demanding more tests. Anyway, a little over a year later they found it. I already had my 6 rounds of chemo, am still doing immunotheropy until February and I had my mastectomy on July 7th. I have an appointment to go to St. John's medical center in Akron Ohio to see a PS on August 25th to talk about a DIEP reconstruction. Has anyone had their reconstruction done there? My doctor will be Joseph Khouri. I do not want to have silicone or saline if I can do the diep flap. I want to just get back to as normal as possible.

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Kbutler - hi there! Sorry you have found yourself here, but you've come to the right place. There's a wealth of knowledge and experience amongst our members.

    I live in WI and cannot help you with the medical center/PS you mention. I hope someone else here can help you with that.

    You have a little time before your surgery. Be sure to ask questions and ask for pictures and if you still have some questions do not be afraid to get a second opinion. I was lucky to get a PS that I trusted from the very beginning as I met many who had had their surgery with her and spoke so highly of her. I am scheduled to have a DIEP on August 25th.

    How are you doing after surgery? Did you have a a double mastectomy or unilateral? Any reconstruction? I hope you're ok with me asking.

  • lb_cc
    lb_cc Member Posts: 2
    edited August 2022
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    Good morning!

    I’m scheduled for Nipple Sparing mastectomy on 8/23, with extender for implant in a few months. No hx of BC in my family, so this dx was totally unexpected. Thankfully, I found my lump on 7/7, got the ultrasound and biopsy, then diagnosis within a week. I’ve been so busy lining up and attending appointments that it’s only now that the fear of the unknown is rising up. I’m a social worker, so I’m very used to advocating and organizing, so this process was like my work (which was helpful, probably!), but now…I’m scared and I’m pissed off. I really appreciate this thread and the prior months, as it’s helpful to have concrete examples of post op experiences. Thank you, all, for posting and sharing your human experience in real and honest terms

  • ktsmitty
    ktsmitty Member Posts: 15
    edited August 2022
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    Hi everyone. I was diagnosed last month and spent most of that time doing a ton of research and reading through the great resources this site provides. I am IDC, my lumpectomy (left) is scheduled for the 29th of August, a week after my birthday, how fun! :) I've spent the last 2 weeks in/out of medical appts, having pre-op appointments, another biopsy (found to be ALH) and other tests - to include genomic testing (I am Luminal A), genetic test (Negative) and MRI. My BC was found through mammogram/ultrasound that was suspicious for a couple of years, only this year the radiologist recommended the biopsy. My course of treatment is the lumpectomy (no drain) with sentinel lobe removal with some kind of blue dye (no reports of Lymph Node invasion), followed by radiation and hormone therapy. I am ER+/PR+, HER-. Surgeon says they'll take out both the tumor and the ALH site since they're in same quadrant (BC 6 o'clock 6.0mm, ALH 4 o'clock, 3.4 mm). Questions are: what should I expect after lumpectomy? Will I be wrapped like a mummy? Radiation, I understand will start after the wound heals and the follow-up a week later to ensure the margins are clear. I read that treatments range from 2 weeks to 7 weeks daily doses. Is there a set calculator to determine this or is it after pathology once the tumor is out? I also have a pre-op PT appt tomorrow so they can measure me for possible lymphedema (if that happens) exercises. I have so many questions and searching through thousands of posts is very difficult. I also posted this under the lumpectomy lounge. Thanks in advance for the experiences everyone is sharing, it surely does help a great deal!

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Ib_cc - I'm so sorry you have found yourself here, but you've come to the right place! I too am the Social Services field. No family history of bc. I found a lump not even two months after having a mammogram that showed nothing. This was on the day of the shutdown due to covid in my state. I was biopsied within days and dx'd within a week of finding the lump and started chemo two days later. The dx alone hit me like a ton of bricks, but I had no time to think or even process because everything was so quick, thank goodness.

    It's ok to be scared and pissed off. I know I was, and to an extent, maybe deep within, I still arm as here I am almost two and half years later and still dealing with this.

    Please be sure to let us know how you're doing before/after your surgery.

    Ktsmtty - same, I'm sorry that you are here, but we are all here for you.

    I had a BMX so as far as your questions regarding the lumpectomy, I cannot help, but I'm sure others will chime in. The blue dye is injected to detect whether there are lymph nodes affected, even micro invasion . Hopefully there won't be any.

    I had radiation a year ago in Sept/Oct, 25 sessions. I had a very high dose of rads, but this was due to a reoccurrence of TNBC. I'm sure you'll get more answers from others who can answer your questions regarding how doses are determined and how long. The doctors def be able to tell you more after your lumpectomy.

    It's very wise to see a PT before surgery. Stretching is key to preventing LE. I don't have it, but I was in PT and massage therapy for a year and half after initial BMX and continue with my daily stretches. I'm terrified that my upcoming surgery will trigger LE.

    Please keep us posted on how you are doing.

    You ladies have this!! Stay positive, it really helps and please, please be kind to yourselves!!

    Hugs to you both.


  • emmaleah
    emmaleah Member Posts: 17
    edited August 2022
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    Good luck, all, on your August surgeries coming up! I'll be having a sentinel lymph node biopsy on 8/23. (It is a separate procedure from my lumpectomy of 7/27 due to upstaging from DCIS to IDC after surgery.) Sending you strength and courage and thoughts of safety, oncological completeness, and ease of recovery, recuping, and healing.

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    Emmaleah - thank you! And the same to you! Wishing nothing but the best positive outcome for you as well.

  • fivetimes
    fivetimes Member Posts: 51
    edited August 2022
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    Hi all ! This is my first experience in this site so - thank you 🙏

    I went for a mammogram on June 1 and was recalled for 2nd mammogram on June 4. I knew something was not good! Biopsy on June 12 confirmed malignant cancer in right breast which is actually a recurrence from breast cancer 29 years earlier at age 38.
    this is my 5th cancer and my people seemed shocked that I’m tired of fighting. So it’s hard.
    my surgeon wants to do DM for fear of recurrence on left breast. I don’t know what to do!! But I have to decide quickly pre op visit is Monday and she wants to schedule surgery in 2 weeks

    I’ve spent the last 2 months working in my gardens trying to make this go away - and surprise!! It hasn’t worked🙃

    Does anyone have any suggestions or thoughts on this? TY


  • moderators
    moderators Posts: 8,286
    edited August 2022
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    Hi fivetimes,

    We are so sorry to hear of the recurrence, but are glad that you came to the BCO community to seek support. We hope that the website and some of our members may be able to provide you with some helpful insight . We would like to also inform you of our virtual "In Treatment" groups that meet on Tuesdays and Thursdays where you can meet other members that may be able to provide even more information and share personal experiences. Please do not hesitate to reach out if you have additional questions. Links with registration opportunities can be found below.

    Warmly,

    The Mods

    https://us02web.zoom.us/meeting/register/tZEvc-uur...

    https://breastcancer-org.zoom.us/meeting/register/...

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    fivetimes. -I'm so sorry you are going through this again. I had a very short time to have to make the decision on whether or not to have a BMX, UMX or a lumpectomy. I had no idea what to do I was so stressed. It is such a personal decision and what worked for me, or not because here I am again :), may not work for you. I chose to do the BMX because I had very dense breasts and I knew that every lump or bump I felt or any blemish that I saw, I'd freak out. Every call back to have a mammogram or ultrasound would put me in panic mode. I would drive myself insane. So I got rid of them. And even after having them both removed, I had a recurrence. not even 5 months later.

    You need to be at peace with your decision. I wish you that peace. We're here for you!!


  • fivetimes
    fivetimes Member Posts: 51
    edited August 2022
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    thanks serendipity09!! I’m sorry for anyone who has a need to be here but already I feel better having someone who UNDERSTANDS how I’m feeling!! So thank you very much and my sincere wishes for your full recovery!!

    Yeah they can’t do a lumpectomy and rad because i developed skin cancer at the rad site from the first bc.

    Your story sounds so similar to mine and I wake up every day with a new theory on what to do😣 it’s driving me crazy. Of course my fear is exactly what you’re facing - doing the DXM and having a recurrence not long after.
    I’m so sorry you had to get that news. What was your treatment plan for the recurrence if you don’t mind me asking? No pressure to say more than you’re comfortable with.

    Eight years ago I had lung cancer and had to do chemo and always swore I would never do it again and I’m very worried that if I have a recurrence after the DXM surgery, that will be my next decision I don’t wanna make.
    Thank you for your wishes of Peace!! that’s really what I’m looking for what I’m praying for, is to have some peace of mind with a decision that I can stick with.

    Thanks for being here to share. ☮️

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2022
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    fivetimes - no problem, I'm here for you!

    You have been thought quite a bit, I'm so sorry you are having to deal with this.

    I had to do radiation after the recurrence. Something that should've been done a year before, but it really wasn't necessary." I use that term lightly as the MO and the BS recommended it, but the RO and the second opinion did not feel it had to be done, it was truly up to me. They fed off of my not wanting to do it so I didn't.

    I say the say same as you, I don't know if I could do it all over again, but I honestly don't know. I say that now.

    I am at peace with having the BMX, now it's just getting through the DIEP. The BMX was not as bad as I thought it was going to be.

    You've been through so much, you will get through this too!!