November 2009 Mastectomy
Comments
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Jane - My experience on surgery day was pretty easy since the surgery was at 8:10 AM. The day before I just kept busy so I wouldn't dwell on the upcoming surgery. Try renting a comedy that really crack you up (no sad movies allowed).
The surgery itself was under two hours since I didn't have reconstruction. Slept most of the day away. Was in the hospital for two days then came home with four drains in. I have found that so far the scars don't bother me when I look at them. I have a camisole that has drain pockets so I wear that when I go out. At night I just slip a cloth ribbon through the tabs on the drains and tie it around my waist. That way they don't slip and fall under me as I sleep on my back.
Good luch with the surgery tomorrow.
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Hi Linda - sounds like nerves are really stirred up! The lower part of my left arm felt that way after surgery - I actually looked at my elbow 'cause I thought I'd rubbed the skin off! I think the nerves are sometimes cut, or sometimes stretched, or swelling in the area makes them swell or something - causing them to be super-excitable! Some of the numbness will go away, and this highly sensitive area seems to settle down as the nerve returns to normal. I've been rubbing my arm - trying to re-train the nerve to normal sensation. It's getting better.....but maybe it would have with just time! In February, I was very sensitive below my collar bone - and found out that breast tissue goes clear up to your collar bone, so with a mastectomy, they are removing tissue from that far away from the incision. Gentle massage helped to tone down the sensation then too.
How is it going today, Jane? Deep breaths, try to relax, focus on positive things! God will supply all your need.....
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Thank you for your information about surgery day. I hope I am able to tell my story in a few days. I know I am supposed to be nervous, but I was hoping to get it together a little bit better. Tomorrow at this time it will be over. Thank God
Jane
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Another busy day - exercise, tutors, laundry, dishes, straighten up the house.....and I'm not even too tired! I am so thankful. One step at a time, we keep marching forward. My hand is in His, and I want it to stay there! Thinking of you all and praying all are making progress. Glad you are DONE, Jane. Hope to hear back when you can.
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Where do you get all your energy, 2Hands? :-)
Jane, I have thought about you all day today and prayed for you. I know you're so glad it's over as I am for you too! 'Looking forward to hearing from you!
Tomorrow is my first day back to work. Actually, I teach so it'll be easy as it's final exam week. So all I have to do is sit! That's not too bad and I am looking forward to getting back into the normalcy of life. Being at home (mostly) for 2.5 - 3 weeks is getting a little old in a way.
Wish me luck with my fake boob in my camisole! (Actually, it looks pretty good! :-) )
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I haven't gone back to using my prosthesis yet...it still seems too tender.
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hello, I'm having a bilateral mastectomy on Dec. 9th. I formerly had a lumpectomy in 2006. My current "lump" is thought to be benign but not certain. The bi-lateral is my personal choice. I would like to hear from other women in my age group (I'm 68) who also have opted for this procedure instead of living with the constant fear of the cancer returning. thanks.
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hi cammy. I hope you are feeling better by now. My bi lateral mastectomy is tomorrow and even tho I made the decision (I am 68 yrs. old) and don't currently feel like I will even miss my breasts (not having reconstruction) I may find myself surprisingly sad for a while, Who can say? We all react differently. My baby sister just had a radical double mastectomy on the 3rd and she is only 46 yrs. old. She is planning to have silicone implants done and said she hasn't worked up the courage to look at her chest yet. Anyway, I am healthy otherwise and hope to recover quickly and get back to doing all the things I love to do. best wishes to you.
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dmorgan - I don't return to work until next week....in February, it was 8 or 9 weeks, so I'm pleased this is only 5! I probably could have gone back last week, but my husband thought that was a little early and the scheduler at work thought even this week was too early. I could have gotton around her but decided that I'd just take the time and get some more things done at home! There's always a never ending supply of projects, plus the usual! And I only work one day a week, but it's likely to be very busy!
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lilacplane 68 - I have now had a bilateral mastectomy but in two separate surgeries, and I'm "only" 53! I don't know if you'll get many responses to your questions here but hopefully some will jump in and help you. My second surgery was considered prophylactic and the final path report was negative for cancer, but there was enough busy-ness that the doctors were sure it would only be a matter of time. I haven't had reconstruction and don't plan to. But, like you said, it is a very personal decision. Some are really sad at losing their breasts, and some are sad some time after surgery. I felt it was God's will due to the clear direction from several doctors, so after the initial surprise of planning a second surgery in a year, I've just marched forward, trusting in my Father who does ALL things well! My husband has been a great support also. Sounds like I will still need some follow-up just because of the past diagnosis - my oncologist said maybe there is still enough tissue for mammograms???? So, even with a bilateral, I'm not completely done as I thought! At least any reoccurance in the few breast cells that may have been left behind is easy to find!!!!
There are a couple of threads that might be helpful - One is in the Surgery Forum - go to page 4 and look for "Need Mastectomy - considering double". These ladies may also be younger but their thoughts may be what you are looking for. Also - under High Risk Women - also page 4 - look for "Prophylactic bilateral mastectomy after successful treatment". If you can't find these - let me know and I'll bump them for you!
We'll be thinking of you tomorrow - recovery really is do-able!
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November 12
Bilateral skin sparing mastectomies with sentinal node biopsies, lattisimus dorsi flap with tissue expanders.
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I'm sorry I haven't posted sooner but I got tied up with family and still trying to get things around here unpacked and put in place.
I went and met up with my oncologist Dr. Ma and she is such a sweetheart and her nurse Shannon is a doll. As we were talking I was trying to take notes and keep things in order so that I could go over them when I got home. But she had her nurse take notes and then type everything up for me to take home and read so that my mind was able to be "there" instead of taking notes and so on. (See what I mean by real sweethearts and dolls?)
Anyway the good news is NO RADS! Which was my biggest fear far worse in my mind due to the complications my Grandma and Mother had with it.
So on the 21st I'm going to have a port placed and have my first chemo treatment. The plan she has made for me is 4 cycles of AC (every other week) and then 4 cycles of T every other week. So I'm looking at 16 weeks of chemo.
Since I'm going to the Siteman Cancer Center at Barnes Jewish Hospital which is also a teaching/research hospital they asked me to be in a research study as well. It's the phase 3 trail evaluating the role of exemestane plus GnRH analogue as adjuvant therapy for premenopausal women with endocrine responsive breast cancer.
Which basically is a lot of words to say that I'm going to get a shot once a month along with the drugTriptorelin instead of Tamoxifen. The way I see it is this... so many woman before me has gone through the same things we are right now and sadly not all of them made it... (my grandma and mother included). But they along with so many other women have paved the way for many many more of us to survive and continue to lead happy lives. And now it's my turn to see if I can help the next generation to have better treatments and a smoother road to recovery... that is until they find the cure. If it hadn't been for other women willing to be in trials and testing I could have had the same surgery my Grandma had to have and her scars went the from middle of her chest to around her shoulder blade. I also owe to it to my daughter, nieces, friends, family and other women around the world. So this is part of my donation to help pave the way to a smoother road in recovery until the cure is found!
But want to know the scariest part for me to wrap my mind around (so far)? Having to give myself a shot the day after each treatment. I'm NOT... I repeat I'M NOTgood with needles!! I'm going to ask if I can just put the shot in my port instead of my stomach..lol Just the thought of that gave me the wigglies!
Marilyn
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Ms MARILYN- You have to be one of the most upbeat, positive, bright-outlooking women I know. I love it!!!!! You go girl! :-)
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Hey Msmarilyn - let me know how your self-injection goes. I have to give myself the Neulasta shot this afternoon.
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Welcome dlhigh! I will add you to our list! How are you doing? Your surgery was just 2 days after me!
MsMarilyn! Great news! Keep that positive attitude!
How is everyone else doing? We are now 1 week to about 6 weeks after surgery. What is the biggest issue you are facing as far as recovery from surgery? I have some intense itching usually when I change for bed and get dressed in the morning. I'm guessing that the nerves get brushed with clothes and it sends them into an "ITCH" mode. Well, they are just going to have to learn to settle down! I'm going to look for Glaxyl cream - suggested by barbe - but it may not be available here since she's in Canada. I may also try capsaicin cream to block the impulses - but I'll need gloves since it will stay on my fingers even overnight - and that makes it NO fun to put contacts in the next morning. It is supposed to interrupt the nerve pathways. I wouldn't try it on the incision for those who have had surgery more recently, but the areas that itch are sometimes not even by the incision - and I'm healed enough now that even the incision probably wouldn't matter. If I put it there, I'll try a little in one place before I put it on the whole incision!
I know this is very minor - no chemo, no rads, no reconstruc - makes a huge difference! If itching is my biggest problem one month out - the surgery is very do-able! With my February surgery, I was still so exhausted. This time, I pulled out dead flowers yesterday and re-planted pansies and violas and also re-potted 2 poinsettas in a pot with two cyclamen - for inside! I about decided - guess I really better get back to work.....it may be easier! If I'm home, I dream up more projects!
We have had hard freezes the last two nights - down to 26 and 28!!!! I know, I know...that doesn't sound too bad for you east coast ladies, but here, we seldom get down to that low. We'll have a few nights a winter of 32 degrees and most things except annuals will stand that. But with these temps, we had to pick all of our persimmons, tomatoes, and green peppers, cover the orange tree, and alot of other plants are now spinach!!! It's suppose to warm up now and rain so we only had 2 nights of it. It really just got winter here in late November and by February, the almonds and daffodils will be blooming! Even during these months alot of days will be sunny and nice even though "cold" (about 60 or so!). My husband grew up in the East, and loves the California winters!
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I got my path report and I will not need any chemo or rads. I am so happy that I cant remember if I posted that already.
Rebecca
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Saw the surgeon yesterday. He only took out one of the four drains. Next week he will take out the staples and the other drains, hopefully. The good news is that the path report showed no residual cancer. Looks like the chemo did its job with the cancer that remained after my lumpectomy in July.
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I saw my Dr. yesterday and she drained some more fluid. She wants the pieces to "stick" together. She said she will probably need to remove more next week. I'm a little sore today. It snowed here, so I used that as an excuse not to go to work. I didn't even get dressed today.
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rebetata
I had my surgery on 12/7/09 Rt. Mast, with Recon and Left Reduction,
I also heard from my surgeon good pathology report. How are you feeling? I just came home today. I am still sore and have 2 drains
Jane
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dmorgan2
Thank you for thinking of me. I came home today. I am very sore, but doing alright. The surgery went really, really well. My anxiety was way over the top. I don't remember anything frightening. All the fears were unfounded.m
You are such special people. Thank you again.
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Jane- Welcome home! I thought about you so often and prayed for you as I said I would. I KNOW you're glad it's over--that's how we all felt. Your fears may have been unfounded, but you had good reason for the fears. We're human!
Rebecca and Kim09-Congratulations!!! Great reports! It's worth all that we went through!!!
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I second the "Welcome Home" Jane! So glad to hear you didn't have a reason to be afraid, but until you've been there....it is hard to believe others! Our prayers were answered for you to have an "uneventful" day!
(Like a mastectomy can be "uneventful"!!!!?????). I hope others looking on can see that it's OK to have emotions, share these emotions, and yet find some comfort in the truth that it really does go well. And the relief is real too! And it's worth it to have the cancer OUT!Rejoicing with you in your good reports Kim and Rebecca. Praise the Lord!
Jane_M - Should we pray for more snow so you have more excuses? Good for you for taking it easy today!
Debbie - are you doing OK too?
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Jane- feel pretty good. Only use pain pills at night. I am getting my drains out today so a little nervous about getting a seroma. I am planning to go back to work on Monday but I will start part time for now. I do have the feeling I am wearing a steel bra 24/7 one would think that it would be easier but its not. The TE is just so darn uncomfortable.
Rebecca
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Hello all,
Rebecca, I am so happy that you will not need chemo! You must be so happy. Will you need Hormone therapy? I see you are going back to work next week! I can't imagine. I am not ready yet at all. Take care of yourself!
Linda, I have had mego-sensitivity of the area and clothes are so uncomfortable! and I have a tremendous amount of under arm pain! There is swelling there, too. Although, I think I 'turned a corner" yesterday. I think this morning the swelling and pain are a little less. The pain is weird...not incisional pain, but a weird burning kind of pain.
Jane, I am sorry you are going through the swelling and draining. I will continue to pray for you, as I have been praying for everyone on this list everday.
Karen
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Karen- I was on Tomoxifen before the surgery and believe I will have to continue tomorrow I will se the BS again . I am sure we will discuss that.
Rebecca
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Hello ladies,
Sorry to have been off so long. I had my mother visiting to help and then my mother in law and have been a little tired too. Things are going better every day I am hapy to say and I am starting to feel more normal too.
As many of you have said, the nerve pain is irritating and that is what has been really tiring me I find. I also have swelling on my side where the lymph nodes were removed and where my arm touches it always feel odd and sore. The only actual pain I have is trying to stretch out the right side with the lymph nodes and the rest is mostly just irritation or that horrible tight band feeling with the TE's. I also get the cold feeling often-which is initeresting when the hot flashes come! LOL
The great new is I finally got the drains out this Tuesday. I feel human again and I can shower!!! Woohoo! 3 weeks of drains are pretty irritating. I had 4 of them and tucked them into a fanny pack. That worked really well. I also had my first fill; 60 ml's only. Progress! I am hoping I will get the path report results Dec 17. Canada is so much slower in that respect.
I think the hardest part is the nerve irritation. But is is not really painful, just tiring.
It certainly is great hearing from everyone. Often someone brings up the very thing I am thinking that no one who has not had this surgery could even imagine. It is very reassuring and helps to make the whole thing more manageable. This is doable and it does not have to be horrible or scary.
Take care everyone and I hope you are all doing better day by day. Gentle hugs to you all.
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I'm working on a patient information flyer that I HOPE to get someone convinced to use at the medical clinic where I've had all of my procedures. I feel like I had to do alot of my own research and would like to see something "simple", yet inclusive enough, to give ladies some help who are just beginning this journey.
Does anyone here have any "must include" information? Anything that you wished you would have known that no one ever told you? Anything that surprised you about the recovery, information that surprised you? I want it simple enough that they will agree to use it, so it's hard to know what to include and what to leave out. Any ideas are appreciated!
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2Hnads-
Can u give us an example of the info that you're wanting?
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2Hands4Me
Some suggestions that I received,
I was given a bag filled with what were called "necessities". In that bag was a booklet that gave very simple suggestions about, how to dress for your trip to the hospital eg. something you can wear home. button front shirt, elastic waist pants and slip on shoes. What to bring and what not to bring, like pretty pajamas that you might like to discard after your stay. It might make more sense to wear the hospital gown and bring a light robe for walks around the floor. There were 3 men's white sleeveless tee shirts in the bag that were very comfortable for the trip home and after under clothing. The tee shirt held the drains in place without any saftely pins. There was a water bottle, a chapstick an emeryboard and lifesavers in the bag also. In addition there were two very small beautiful pillows for comfort. Also included were some gauze, tape and ribbons for securing the drains at home for washing up. There was a pad for jotting down notes in the hospital. I found the information as to why I would need these things as useful as the actual items. By the way the water bottle was included to lay next to you, so when your tray with paper cup was out of reach, you could get water without having to ask for help. I hope this helps a little bit.
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It just seemed to me that I had to find so much of my own information - books, web sites, medical terms, staging, types of biopsies - everything! But I like to understand the information and the options. I was never told that a seroma was a possible complication, and was given some incorrect information about the SNB - by my surgeon! I think it would have been helpful as a newly diagnosed patient to have a brief overview of written information and references of "approved" sites to find more information.
And since I can't think of everything, I was wondering what types of things would have been helpful to some of you ladies about diagnosis, surgery etc. What weren't you told that you wish you had been, how did you know to find this site, what information did you have (from where?) that was particularly valuable???? Those kinds of things....
2 doctor appointments tomorrow......oh, well, at least they are basically routine....
Hope everyone has had a wonderful weekend!
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