MASTECTOMY MEETUP
Welcome I would like to see a mastectomy forum for like minded ladies. I have things I would like to discuss, ask questions, seek advice, need support from ladies who have had mastectomy. Some of you ladies had a lumpectomy that eventually lead to mastectomy. I personally don't feel I can relate to the women who have only had lumpectomy. Just my opinion. Everyone is different.
I am scared. I am losing a breast not planning on reconstruction at this time.
Anyone else?
Comments
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I am facing a mastectomy in near future too, and would be thankful for a forum related to this!! I have lots of questions too!
thanks!
Traci
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I'm with ya. First (and hopefully last!) surgery is Mastectomy in two days, no recon planned. I just want to be done. Not scared yet, but I am sure I will be.
Mostly I fear the lymphosintigraphy prior to surgery where inject radiotracer to locate the nodes. No numbing and rumor has it that is the worst.
When is your surgery
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I had bilateral/no recon coming up on 2 years ago. I'll listen in and if I can answer a question, I will.
Icantri, I had the radioactive injection on both sides with no numbing and it was not even very uncomfortable.
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My surgery is done about 10 days ago. I first did SNB followed by the left side simple mastectomy.
The surgery itself is not bad at all. And I recovered pretty fast. Even though the drain does not work so well and got clogged several times.
I think the most stressful part for this surgery is the waiting time for getting PATH report. I am not the lucky one that found a small IDC in my DCIS.
Good luck every one.
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My surgery is scheduled for Dec 9. The surgeon is comfortable waiting till the first part of December. Which gave my daughter time to make travel arrangements. I will be having a uni on the Left. I have only been in the hospital for birth of my children, 35 and 32 yrs ago. I do not even take a tylenol, so for me this is major. Also the not knowing on what happens next? Will there be chemo? I do know I will have hormone therapy at some point. So how does everyone feel about having to remove the breast?
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Goincrzy - Glad you came up with a 'catchy' name for a Thread for us who masts. (UMX or BMX) are what we have/need.
I, too, have only been in a hospital twice in my life before UMX. Once in Dec 1977 and again in 1978 for my 2 Sons - both C-sections.
It needs to be remembered that not all mast. will be the same as to what goes on. I see several posting about radioactive dye pre surgery - not all have this done. I don't know anything about it but did not have it done bit it was already known that I had positive nodes from the biopsies. Also, I'm not IDC but IBC.
One of my drai s was removed 14 days post UMX with no problems but 2nd was removed 4 weeks post UMX and had issues with a large seroma after it was removed.
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Goincrzy8, I had never been in the hospital before, and my bilateral mastectomy was a day surgery, which I was happy about. After the surgery I think I only took one Tramadol and some lorazepam to control muscle rippling. There wasn't much pain from the surgery itelf, though the drains itched and the compression binder dug into my armpit.
Whether you have chemo depends on a lot of factors, including whether you have positive nodes. This will be decided after surgery and pathology, most likely. Radiation is also a possibility. Search for posts by BarredOwl for very clear descriptions of the protocols, with citations.
I liked my breasts and was sorry to see them go, but it was time.
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Hi Goincrzy,
My surgery will likely be around the same time as yours, meeting w PS Monday and then setting up surgery date. I havent been in for major surgery since c-section 14 yrs ago, so feeling the same. I also do not know what my treatment plan will be until after surgery and path reports.
I will be having a UMX on Right side, with reconstruction coming later.
Scared here as well, so feeling the same!
Good to hear others who recovered well after.
Hugs,
Traci
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I agree that a mastectomy-specific thread is very useful! Many people who join this thread will also have chemo and/or radiation, and I want to encourage you to join the monthly or seasonal thread for that treatment as well (the title will be something like "starting radiation winter 2017" or "Chemo sisters Dec 16"). If such a thread doesn't yet exist, it would be great if you started one and let people know about it in this thread. You can also look back at previous threads for great suggestions and ideas about what to expect.
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Thank you Ksusan, lots of information and I want to thank those who have been through this before us newbies for information, encouragement and tips to get through this.
Sherry
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Keep the questions coming! There's power in the community.
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I had a lumpectomy with axillary lymph node dissection but there was so much DCIS and IDC in the margins I ended up needing a mx. I had a left side UMX first with a TE for recon. That was followed by 6 weeks of radiation. No chemo due to low oncotype. I decided after months of one natural breast and one TE to have the right side removed. I have a genetic mutation the increases my risk of a new cancer up to 29%. I am now waiting to finish reconstruction. Losing your breast can be traumatic but I found having only one natural breast more upsetting than losing them both.
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Molly that is what I wonder, how will I feel being lopsided. I have large breasts. Not looking forward to losing one, let alone 2.
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Hi my BMX was Monday the 14th. The pre surgery anxiety was horrible to the point I made myself sick! I too had only been in the hospital to have my 4 kids and all natural. My surgery started at 1:10 and I was in the recovery room at 3:20 and in a room by 4:30. Used only Tylenol and fioricet. Did have an allergic reaction at 2am from an antibiotic they tried to run post op. It was scary but they handled it well and I was discharged Tuesday morning. Now at home I can't find any comfortable place to sleep that's also not near my 3 year old and her curiosity 😊.
I will say when I saw my bandages this morning I had a breakdown and was glad my husband was with me. I chose no recon because honestly I don't ever want surgery again....overall sore but not pain but can't wait to get these drains out!! Good luck and sending prayers and blessings! -
Thank you nulyte for sharing. I have read the anxiety before is worse than the sx. But still scary.I do have a recliner I am going to be using as a bed
I know you had BMX, how many drains do you have to deal with? -
Goingcrzy8, the emotional healing came pretty quickly for me. The shock of seeing my breast post op the first time was more than the second. My surgeon did such a beautiful job and once my TE's were filled my discomfort was minimal and the TE's look pretty good, even my radiated side.
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My mastectomy was November 9. I had immediate DIEP flap reconstruction at The Ohio State University's James Cancer Center. The injection for the SNB didn't hurt at all. The staff was top-notch. Although I haven't been able to look at the reconstruction yet (just not emotionally ready), my husband, the nurses at the hospital and surgeons say it looks great. One of the nurses told me that should she ever have to make a decision for reconstruction, she would do the DIEP flap.
As far as recovery goes, the most pain/discomfort has come from the abdominal incision. By the time I got home (three days post surgery), I was only taking Tylenol during the day and a little higher pain reliever at night to get through.
Wishing all of your upcoming surgeries go well...and recovery is speedy
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Hi Everyone,
I received my bilateral mx on October 4. I find that my TEs shift and then my breastsfeel really hard. Also, when I swear a bra, they feel really hard.
Anyone else going through the same experience?
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hi there,
I had a mastectomy in August after a lumpectomy and reexcision didn't result in clear margins. It was something I really wanted to avoid...that more drastic surgery. I also chose no reconstruction because I didn't want more surgeries and I felt that If i couldnt have my own i didn't want a fake one attached all the time. The surgery itself was not terrible (the radioactive Shots didn't hurt but I cried anyway) I only have been in hospital hospital to have my kids so being sick has been hard Emotionally it is so hard but I am trying to take it day by day and not get so overwhelmed. The thing I wasn't prepped for was how sore my arm would be and how it would take time to get strength back (my shoulder is still sore). I also was prepared for
All the numbness on my chest and in my armpit. Having this thread is so great because then we can see what is "normal" as we go through this really hard thing.
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I have a question, if you had MX/BMX do they give you exercises to strengthen the arm(S). Should I be doing arm exercises now since the surgery isnt until Dec 9th? Open to any tips and what if anything you would do differently.
Sherry
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thank you for the responses saying that the radioactive injections weren't bad. Maybe the ones I read who had horrible pain were very rare instances. I feel much more confident about that.
And nulyte, sharing your story gives me more confidence too. You rocked it sister
Tomorrow's my day. I am ready. I can do this!
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Goincrzy8- I don't think there are exercises to do before the mastectomy, but after the will give you ones to regain your range of motion.
Lcantri- good luck tomorrow.
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Icantri you got this. We are here for you.
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Couldn't hurt to be in the best shape you can be before surgery
You'll have some restrictions on arm movements and lifting after surgery. Ask your doc beforehand and plan for it (for example, if you'll be home alone, don't have all the glasses in a cabinet you have to reach for).
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my suggestion, if you're having a double mastectomy, make sure you work on your ab muscles if you can before surgery. It just helps to be able to get up and down and out of bed. I didn't and wish I would have
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Tsoebbin is right about the abdominal muscles - it will help if you can get up out of a chair or rise from a semi- inclined position without using your arms or chest muscles.
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That is a great idea I do have a recliner I never sit in. Sat in it and tried to get up and realize how much I would need my left arm to get up; Thanks
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Has anyone used Knitted Knockers?
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I have two pairs, but a bra would still be really uncomfortable for me, so I don't bother.
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Iused one knitted knocker for a few weeks until I healed from surgery and got my TE filled .
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