Alone - recent double mastectomy

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2012

    theyaregone, do you have a fever? You might have the beginnings of cellulitis, which is a serious infection. Unfortunately, we're vulnerable to that even with one node taken. Please, either call your doc or go to the ER.

    Sigh. I hope I'm wrong.

    Leah

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  • theyaregone
    theyaregone Member Posts: 52
    edited February 2012

    Circles - I have full range of motion but the physical therapy is keeping the underlying skin from adhering to the scar.  Something like that.....

    Future plans????  Hmmmm I am not sure.  My foob nurse wants me to make scarfs and she will buy them from me.  So I am searching for a pattern.  I want to make my life count for something.  Right now one of my major problems is that I am not important to anyone.  I'm not needed.  I want to resolve that.

    I also want to go on an Alaskan cruise.  That was something my husband and I always said we would do someday and that someday never came.  Word from the wise....DON'T WAIT FOR SOMEDAY.  DO IT NOW!!!

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  • theyaregone
    theyaregone Member Posts: 52
    edited February 2012

    Leah I took your advice and went to the hosp.  They gave me I.V. antibiotics and left in the port because I go back in 24 hours for more.

    Thanx so much!

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited February 2012

    Ah, TAG, sorry about the infection. I had one and was on IV antibiotics for a week. Hope you clear up faster.

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  • cajmi
    cajmi Member Posts: 80
    edited February 2012

    Theyaregone,

    This site is a great place to find support, I hope you are feeling better!!!

    I also have a question for all of you and I hope it is okay to ask here.

    Does anyone feel guilty about having DCIS since it is considered stage 0 cancer?  I just had a BMX with my DCIS, but sometimes I feel like people might judge me since it was for a stage 0 cancer.  I also feel like I don't want to make a big deal out of it when there are others out there who have it so much worse.  Kinda weird, I know, but does anyone else feel this way?

    Thanks,

    Carolyn 

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited February 2012

    Cajmi, No, No, No! Do not feel that way. I had "only"DCIS and I chose a BMX. I got a lot of trash for choosing that. Unfortunately, they found the invasive cancer in that one. I will be starting chemo next week. I would NEVER wish this on anyone. I am happy when people get good news. It gives me hope that sometimes things could go right for me too. So cut yourself some slack and just be happy, you still had a scare, a BMX, and a time to think about life. All in all, not bad. Take care, much love.

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited February 2012

    cajmi

    I agreewith with Moonflwr912!!  I was told DCIS too intially until the MX path report came out and it was IDC.  Also starting chemo this Friday, then herceptin and whatever they are giving me to take for 5 years after that.  You should NOT feel guilty at all!! 

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited February 2012

    MLB, I will be thing of you on Friday.

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  • Circles
    Circles Member Posts: 133
    edited February 2012

    TAG, you go on that Alaska cruise, for sure!  I hope you feel better.  Sorry to hear you have an infection but it is just a small setback. 

    Carolyn, I have had that same guilty feeling too.  But we shouldn't feel that way.  I suppose it is a sense of compassion for others is all. 

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  • cajmi
    cajmi Member Posts: 80
    edited February 2012

    Thanks Guys!!!  I just wondered if anyone else feels that way.  My path has come back so I'm out of the woods on that one.  I'm sorry that myleftboob and moonflwr912 had less than favorable news, but I suppose the silver lining is that they have caught it early!!!

    I think part of my feeling is because my sister was DX in Aug 2010 with stage IIIB IDC/IBC.

    Did anyone have a Tram or Diep reconstruction?  I had a Tram on 1FEB and would like to see how others in a similar boat are doing and maybe get some helpful hints.

    Thanks to all of you for the encouragement!!!

    Carolyn 

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  • c8ndygr1
    c8ndygr1 Member Posts: 186
    edited February 2012

    Carolyn, do not feel guilt for your DCIS diagnosis and BMX w/reconstruction. I had the same diagnosis as you and chose BMX w/immed DIEP.  I do not feel guilt or that I went overkill on my choice of treatment. I  feel very fortunate that my cancer was caught while in a pre-invasive stage. Over the years, I've had to monitor lots of lumpy cysts and had numerous biopsies in both breasts with benign results. In fact, my last mammogram/sonogram showed 3 suspicious areas in both breasts but only one of those biopsies came back positive for DCIS. For me, I felt it was just a matter of time before an invasive cancer showed up. That's why I took aggressive measures with the BMX. I feel badly for everyone who has to deal with cancer whether it's pre-invasive like mine or invasive requiring additional treatment like chemo, radiation and hormone therapy. No matter what, breast cancer is an evil bitch. I hope one day soon medical science will 'take her out' for good.

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited February 2012

    TAG

    The Alaskan cruise is highly recommended by a friend of mine, go for it!

    cajmi

    I guess at the end of the day, this all sucks no matter what and what we ALL have to go through to come out the other end no matter the DX.  Like c8ndygr1 said, this disease is and evil bitch!  I didn't get any recon immediatly after MX although I'm still looking at options.  How are you faring healing wise?  That's quite a surgery! 

    Moonflwer912

    Thanks hun.  I'm on a February 2012 chemo tread.  A couple of the gals just had their first TX today and a few more starting throughout the week.  Just heard from the 2 ladies, they posted when they got home.  All is well, uneventful so its helping me with the jitters.

    Cirlces

    Well said, none of us know when we start this whole thing what our DX is going to be just that we have BC.  I am gratefull in alot of respects though too.

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  • msphil
    msphil Member Posts: 1,536
    edited February 2012

    Hello sweetie, You are not alone, we are your sisters and brothers here for we also have or are going thru the same,I don,t know if u believe in any higher power but mine is GOD and it helped that I had a belief system to get me thru, and so let us be your family and come and ask question and I wil pray for you and us all. and honey please ask your doctor for medication to help with the overwhelming feeling and the anxiety, I dealt with anxiety also during this time, so ask for help from your doc.  msphil (idc, stage 2, 3 nodes involved, L mast and chemo and rads and 5 Yrs on Tamoxifen(I am a 18 yr Survivor so U can believe and have HOPE as that is what got me through.  God BlessYou and us ALL. 

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  • cajmi
    cajmi Member Posts: 80
    edited February 2012

    Hi Ladies,

    Thanks again for the support!!!

    c8ndygr1,

    Thanks for the info, that is another reason I chose to do the BMX since I've heard many others talk about what was found in the patho after the fact. 

    Myleftboob,

    I'm actually doing great after surgery!!!  It was so much better than I anticipated!  My pain has been very minimal except for getting in and out of bed the first few days!!!  It is going to take some time for my back muscles to compensate, but I think this may be a good thing to keep me in line as I have a tendancy to overdue...  I'm healing well and will probably get the last 2 drains out on Thursday:>

    Theyaregone,

    I hope you are feeling the love and support that the wonderful women on this site have to share and hopefully are feeling less alone!!!   We are all here for you whenever you needSmile

    Thank you to all of you wonderful women for your support:>

    Carolyn

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  • theyaregone
    theyaregone Member Posts: 52
    edited February 2012

    Last night I went back to the ER for my IV antibiotics.  While I was there, my surgeon called from his home to check up on me.  How's that for a class-act!

    Anyway, they just finished their 6th poke trying to find a vein and he told them to stop and just give me a shot instead.  Make that 2 shots right in the butt.  I told them they would have no problem finding that since it's so big!  And they didn't!!

    My surgeon asked when my appointment with him would be and he said for me to forget it and come in today instead.  So I went in today.

    I took him some chocolates for Valentine's and that really made him smile.  I do not have celulitis but what I do have is an allergic reaction to the prep they used in the OR.  His tech is going to find out what it is so that we can put it in my records.  I also have a reaction to the adhesive from the tapes they used.  So he gave me a prescription for pills I take once a day until they are gone.  I've taken one so far and it doesn't itch as much.  Plus I have some Benadryl cream to put on the rash which is now up and down both arms.

    I am so happy that is all it is.  I want to concentrate on healing!

    He said that I could fire him now since I won't need him anymore and I cried.  This man saved my life!  He said I could see him again in a month's time.  I win!

    Yesterday I bought some patterns for chemo hats.  I love to sew and altho I don't need one, I am going to make some for other ladies.  Woo Hoo - a purpose!

    I hope you are all doing well today.

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited February 2012

    TAG - I will give you another idea.  When I went to physical therapy (at a women-only place that sees a lot of women after breast surgery), they had a basket full of small pillows - maybe 8x4" or so, made of soft flannel with cute, soothing patterns.  They were free and i was encouraged to take one. I did, and it was SO helpful - you could put it against your surgery area to cushion it in bed, or take to chemo to use in the chair, etc.  I used it many many times and it was a great help.  I bet they are SUPER easy to make. Just very soft little fluffy pillows - I'm sure they only had regular poly fill inside.  Might be something to consider along with the hats/scarves.  I don't know who made the one I received, but I have been very appreciative of it.

    PS  When I was done with rads, my radiology onc said that I had to fire him or else I would suffer from TMD - which means "Too Many Doctors."  His little joke...but it was sad to me, as he was my favorite! 

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  • Cherilynn64
    Cherilynn64 Member Posts: 342
    edited February 2012

    Hi They Are Gone,

    I just wanted to say I just went through lumpectomy and radiation and am a single surivor. I am actually glad to find others who are going through this basically alone although luckilly I finally got the nerve to tell some friends and get some moral support - and my best friend when I was a teenager totally stepped up and took me to surgery and stayed with me and then helped me out by coming to clean and cook for me. She's married with 2 teenage daughters and she said "You'd do it for me." I still cry and am so thankful for her to come back in my life. But I know what's it like at the end of the day and beginning of the day to be alone in this process. I work full time too. I am 47 single and also just went through incredlble heartache with a guy and I delevoped PTSD from it.....7 months to the day I had to walk away from him, I got the diagnosis of breast cancer. Long story but suffice it to day, I'm with you in spirit. 

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2012

    Hi, you are not alone. I have felt the same way you do up until I found this site. I lost my dad at Christmas and he was my main supporter. I am a single mom with a 12 yr old and I can't expect him to understand. I live in Southern Maine and I see you are up North. Maine can be a very lonely place especially this time of year. I already feel better just knowing you are in Maine as well and I hope you do too. My oldest son and daughter in law aren't talking to me right now because I voiced my opinion when they did something that was hurtful. They haven't called for about 2 months and they both know that my results weren't good and I have surgery and treatments coming up. I hope things get better for you.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited February 2012

    TAG, so glad that's all it was happy healing.

    Diana Rose and Cherilynn, welcome to the boards, and sorry you have to be here. I hope you both find the support you need, both on the boards and in your community. You might read the first couple pages of this, a lot good suggestions were there. Much love.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2012

    Moonflwr912, thanks for your kind words. I just had a melt down and feel a bit better. My emotions are all over the place these days. The good news is the Restasis is working. I was able to cry tears. :)

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited February 2012

    Sometimes we realize that tears are a gift......

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited February 2012

    I have to have another biopsy next week because there was a bunch of calcifications that were too far from the original biopsy to do at the same time. If it is negative then I can have a lumpectomy and if it is positive than that isn't an option. The first one is about 1 and 1/2 cm and came back as invasive. It's hard to know what is the right thing to do. Over 7 yrs ago I had a lumpectomy and radiation on the other breast for DCIS and LCIS. Some days I want to just have them both removed and be done and then the next day I am not sure what I want. It's so hard.

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  • Circles
    Circles Member Posts: 133
    edited February 2012

    To all of you wonderful ladies here, I feel your pain as I read your stories.  I'm sending you all a cyber hug.

    TAG, how wonderful you have found a purpose!  You are a good person.  Sometimes helping others is the best way to help ourselves.  I often use that therapy myself.  :)

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2012

    TAG, I'm glad to hear it was an allergy.

    Hmmm..... that doesn't sound right. OK, I'm glad it was an allergy and not cellulitis.

    Well, I guess you know what I mean.

    Leah

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited February 2012

    theyaregone - you sound like a really interesting person and someone who is very cute.  You have lots of interests, so keep the inspiration going. And Girl, your diagnosis is not so bad at all, you have DCIS, stage 0, 1cm, believe me, many of us would like to be in your shoes.  Count your blessings!!!!!!  You are doing great!  Everyone here loves you and understands you completely.

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  • Circles
    Circles Member Posts: 133
    edited February 2012

    I am just cjecking in on my favorite thread and on my favorite gal.  Hi TAG!

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  • theyaregone
    theyaregone Member Posts: 52
    edited February 2012

    My rash is clearing up well.  No more itching!!!!

    I have been going to physical therapy a couple times a week and she said she is going to cut me lose after this coming week.  So I guess that means I am doing well.  My range of motion is so much better and I look forward to the ice and heat therapy!  Love it!!!

    I am not too happy with the 32A's under my arms.  Makes me walk like a muscle man or something...more like the something!  My surgeon said he left the extra for reconstruction but I am not too sure if I am going to go through with the reconstruction - the surgery is not fun!  He left a little extra in front too - I have a cleavage but no boob.  Funny looking...

    Amy I love the idea of the pillows.  A few years back I remember a lady talking about a purse pillow.  One she could wear like a purse and nobody was the wiser.  I'm going to search for that too.

    Circles - stop running around so I can send you back one of those cyber hugs!

    and Leah, you crack me up!

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited February 2012

    Hi TAG

    You sound great!  One thing I've noticed since my MX is that I no longer have the chest creases when I wake up in the morning and I love that.  I can appreciate where you're coming from on no more surgery though!

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  • Circles
    Circles Member Posts: 133
    edited February 2012

    OK Tag, I will slow down, lol!  I am doing reconstruction now.  Had the expander filled and am waiting for the surgery date to switch out to siicone implant,  They tell me it is a 30 min surgery.  My first surgery was a lumpectomy and it was a breeze compared to masectomy.  But I will sure tell you the truth about it afterwards.  I was scared of the weekly injections of saline into the expander but I took half a pain pill first and really, it was nothing (and I am very needlephobic).  TAG, I am doing so good!  Going to work, investing in a pub, going to work more, lol, but really got the appreciation for life now if you know what I mean (and we all do!).

    Waving hi to everyone else!

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited February 2012

    Tag, my surgeon left in the side boobies to. He said he'd fix them at the Exchange surgery. Glad you feel better. Take care and much love.

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