August 2010 Mastectomy

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  • Carlatap
    Carlatap Member Posts: 96
    edited August 2010

    Carole66,  thank you for explaining. Its just that I've read of on these boards of patients trusting their oncs and not asking questions and they pay the price later on. About the radiation.... Can you ask if they can give you some more time to heal before taking the radiation? I know I was able to hold off on my radiation for a few weeks b/c our family was going to get a away for a little bit after my chemo and they didn't have  a problem with that. It never hurts to ask....

    Take care,

    Carla

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  • sunnybluesky
    sunnybluesky Member Posts: 26
    edited August 2010

    Hello dear August friends,

    Please forgive me for not writing a lot--I think of you all and all the support, wisdom, and sometimes humor (we need anything that holds us together!)  that you have sent my way!  I have been dealing with all this by putting my head in the sand.  When I was first diagnosed, I did all the reading and research and now all my ducks are in a row for surgery, reconstruction, medical oncology, etc--- but now I find I just try to think about anything else but surgery and breast cancer!

    Smurfiep -- sorry it has taken me so long to answer (my ADD is in full swing!).  I am having surgery at California Pacific Medical Center (CPMC).  The Breast Health Center there has been  incredible, informative,and sensitive.  Stanford is also a great hospital.

    Nbb --Thanks for asking about my sweet dog. He's doing a lot better, but last night my DH and I slept on the floor next to him because he was having trouble standing up-- I thought he had a stoke--at 4 in the morning, he wakes up and starts walking!  Vet says he only has arthritis!  The counselor at the Breast Health Center said to keep busy and this helps me do just that!

    Winterstorm -- best of everything today, good energy for healing.

    RobinLM and Lago-- we're in this TOGETHER tomorrow! ( I'm at 12:45 PM California time) sending you wonderful, healthy thoughts for the best outcomes!

    All August Sisters-- How did you get through the night before and morning of surgery??  Anxiety? Sleeplessness?  Butterflies?  Right now I'm busy, but I hope I don't have a meltdown-- some friends gave me some special tapes for relaxation for surgery so I think I'll put those on RIGHT NOW Laughing !

    XXOO

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  • Anne068
    Anne068 Member Posts: 176
    edited August 2010

    Well, I went to the BS today, and got my left side drained with a needle. And was told today that I should be doing my "normal activities".  There is no reason to "hold back" and I am healing normally, beautifully in fact.

    Okay. I am now officially completely and totally confused.

    I just don't get it. When I hurt, they say "of course you do. You're supposed to! You just had surgery"... then they say "well, is it interfering with your normal day to day activities?"

    What does that MEAN? I know I have a "new normal" now, but I don't know what the new normal is supposed to be! What discomfort and pain is "too much" and "interfering" and what is the "new normal" and "to be expected". ???

    I hate this.

    Whine over.

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  • lago
    lago Member Posts: 17,186
    edited August 2010

    Anne sounds like these people need a groin punch. Then ask them if it's "interfering with your normal day to day activities?"

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  • Anne068
    Anne068 Member Posts: 176
    edited August 2010

    LOL! Thanks Lago! You made me laugh! Goodness knows, I needed that! Laughing

     Your big day is tomorrow!!  You Robin and Sunny! I'll keep y'all in my prayers! Honestly, the surgery part is not all that bad. Of course, you three are having TE's and/or implants immediately, so yours will be a little different than mine! Here's cheering for no seroma and a speedy recovery!!

     ((((Hugs))))

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  • Nbb1032
    Nbb1032 Member Posts: 74
    edited August 2010

    Just got back from Johns Hopkins and had my first fill!  There are now 350cc in each foob!  The port of the TE was in an area that was numb so I did not even feel the needle!  Actually, I don't feel much different at all.  I think next week I will ask for 100cc instead of 50cc.  My sister is thinner that I am and she really had a lot of pain last year when she went through the process. 

    RobinLM, Lago, Sunny - Sending good thoughts your way for tomorrow! Sunny - On surgery day, I was strangely calm - also the day before.   Some others of us said the same thing - We just wanted it over with!  Lago - I read "Eat, Pray, Love" after my surgery and really liked it.   Light enough but calming and spiritual at the same time. 

    Welcome Chirps.  I added you to the list.   I saw some of your other posts and your diagnosis seems a lot like mine.  I will get my Oncotype score tomorrow and hope to be able to make a final decision re Chemo.

    Well, girls we are almost done with our surgeries!  I know that invariably a few of you will be leaving us for other threads relating to your individual needs.  At this time I just want to say how much I enjoyed starting this post and keeping up with all of you!  (Very difficult at times I must say!) It has been a real pleasure.  I'm not sure I could have made it without all of you.  I feel like I have made 24 new "best" friends in a very short period of time.  Thanks for making it all worthwhile.

    Nancy

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  • LindaNZ
    LindaNZ Member Posts: 22
    edited August 2010

    Sunnybluesky: Many of us just kept very busy the night before. I was lucky to have a lovely friend come into hospital with me and she chatted away distracting me for a couple of hours while we waited. The key is probably not to let yourself dwell on the fearful side of it all. Good luck.

    Nancy: Thanks for starting the thread and welcoming each of us. It sure has made a difference to share the emotional and physical experiences, and to be able to ask questions. Good luck with your chemo decision - am very interested to see what the 4 or 5 of us borderline cases will be recommended and what we each decide.

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  • taranebraska
    taranebraska Member Posts: 129
    edited August 2010

    It's 4:20 pm central, and I'm thinking of Winterstorm - so glad you were so peaceful before surgery!  I'm hoping all is very well with you right now.

    RobinLM, Lago, Sunny - I worked my tail off til 10 pm thinking of all the things I couldn't do later without my arms.  I cleaned my bathroom sink last.  Some friends stopped by to distract me which was great, too.

    Anne - how much relief did you get from the draining? 

    I worked today for my full 8 hours.  Okay, I still have 37 minutes to go, but I'm spending on this site with you!  I'm sleepy, but I'm also off caffeine.  I feel my back is tired, and by  now I feel puffier with the fluid.  Will check in with my nurse again tomorrow.

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  • Anne068
    Anne068 Member Posts: 176
    edited August 2010

    Hey Tara! I don't know!  First of all, it WASN'T numb.. much to their suprise! I felt the needle, and they kept poking other places, "can you feel this? this? this?" Ugh.

    At first there was just mild pain where the needle went in, but a relief from the pressure, which was good. But now, the needle part doesn't hurt anymore, but I SWEAR the fluid came right back! There's at least almost as much as there was before they drained it!  I guess I just need to suck it up. They said it was NORMAL. And that I was NOT to worry. And that the BMX takes a whole YEAR to heal from the inside out. And during that time, my "chest" will continuously change. Even the scars will get very HARD, and go thru a rainbow of colors.. red, blue, yellow, green, etc.  Who Knew?  I'm supposed to be massaging them with Vitamin E oil.

    They said the alternating hot/cold packs and compression bandage are only for MY comfort, and do not have anything to do with the healing process. Dang. I wish I'd known that, because the compression bandage is NOT comfortable!! So I wouldn't have been doing that!

    Plus,, first they say "do nothing"... and I sit on my a** all weekend, making my husband and kids do everything, then today they telll me to "resume normal activities". Well, now I feel like I was just a slug all weekend.

    Why is it so hard to go thru this? And why can't there just be easy answers?

    *sigh*

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  • Nbb1032
    Nbb1032 Member Posts: 74
    edited August 2010

    Wow, Anne you are really having a bad time of it with the fluid.  I am constantly amazed about all the different info we are getting depending on who is doing the surgery and the protocol of the hospital.  I was told in writing to NEVER EVER use hot or cold packs on your breast again.  Because of the numbness, people come in with FROSTBITE and BURNS because they can't actually feel what is happening. (which really makes sense when you think about it).  Then, we were ALL told different things about what causes the most drainage, how not to get a seroma,  what we can lift and what we can't,  and how much activity or excercise we can do and when we can do it.  Don't even get me started on what kind of bra/compression to wear or NOT wear.   I don't know about you but I am sensing that NO ONE seems to REALLY KNOW what works and what doesn't.  It just makes me have very little faith in the medical profession.  I am just going to listen to my body and do my own thing.  I am getting really sick of all the misinformation.  Sorry, just venting.  I think after 4 weeks of this I am just getting tired of the healing process and all that goes with it.

    Nancy.  

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  • lago
    lago Member Posts: 17,186
    edited August 2010
    Good luck to us month enders gang. I'm signing off. Will be back in a week or two and thinner. BTW does anyone know how much 2 A cup boobs weigh? Tongue out Oh yeah I did make it to the gym today too.
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  • Anne068
    Anne068 Member Posts: 176
    edited August 2010

    I don't think anyone knows either Nancy.  And it is very frustrating.

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  • Carlatap
    Carlatap Member Posts: 96
    edited August 2010

    I can't believe its the end of August already. My heart and prayers go out to Sunny, Robin, Lago, and WinterStorm. I pray you can sleep well the night before surgery. I pray for your surgeons and the surgical team that everything go well, and that your families may be full of hope rather than fear as they wait while you are in surgery. Try not to make small crazy things that happen as you get ready to go to the hospital  become big things and cause you to fall apart.

    "Be strong and courageous"

    Carla

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  • orchidgal
    orchidgal Member Posts: 153
    edited August 2010

    Robin, Lago & Sunny,

    I'm getting on here late, and yet am thinking of you, praying for you, your surgical teams, and those who will be caring for you after surgery that everything goes smoothly and you wake up feeling at peace, relaxed, and knowing that the BC is gone, and now all you are going to do is rest & heal.

    I had my BMX w Immed. TEs July 22, and it's getting better all the time. As the onc. pharmacist said to me, "the 1st month will go by in a blur" and it seemed to do just that. The drugs they perscribe for you are to be used, so take whatever you need to control the pain, and little by little you won't need them any longer. It's an adventure, and we are all in it together. Sending lots of love, BIGHUGS- and lots of good vibes. Can't wait to hear from you when you get to the "other side" of this, you'll be so relieved!

     xoxo Melissa aka orchidgal

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  • orchidgal
    orchidgal Member Posts: 153
    edited August 2010

    Anne,

    I read some of your posts and feel for you as it can be so confusing wondering what you're supposed to feel and all at this point - you are less than two weeks out from surgery. From my experience, being five and a half weeks out now, physical therapy is key to getting back to the "new" normal for me. I am not functioning fully as I did before surgery, yet the PT has helped me to get "unglued" if that term means anything to you. I am still a bit "stuck" but getting unstuck day by day. I didn't want to do anything that might be dettrimental, so waited for PT to instruct me. They gave me exercises to do and they do deep tissue massage. I am also getting once a week 1 hr. deep tissue massage from a trained massage therapist who is knowledgeable on post mastectomy scar tissue. Have not used hot or cold packs. Am numb only in center of breasts, and since they are small, that is most of my breast, but can feel sensation in cleavage & around breasts, upper chest, etc. Much of the discomfort and pain, especially on backs of arms - referral pain, they call it, I was feeling is dispersing with the movement and massage. Am also able to walk each day, more bit by bit, now up to about two miles. But you've got to listen carefully to your body and take it easy, and not overdo or you really feel wiped out. Take a nap everyday if you can. I hope you can get PT. I started it at three weeks out and go 2x a wk. Hope this helps. Feel free to PM me with any comments or questions.

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  • Marly
    Marly Member Posts: 70
    edited August 2010

    Anne068, you have no idea what relief you gave me with this:

     And that the BMX takes a whole YEAR to heal from the inside out. And during that time, my "chest" will continuously change. Even the scars will get very HARD, and go thru a rainbow of colors.. red, blue, yellow, green, etc. Who Knew? I'm supposed to be massaging them with Vitamin E oil.
    They said the alternating hot/cold packs and compression bandage are only for MY comfort, and do not have anything to do with the healing process. Dang. I wish I'd known that, because the compression bandage is NOT comfortable!! So I wouldn't have been doing that!

    When I was thinking about the surgery, the actual RECOVERY didn't enter my mind much. I knew that any surgery so extensive would take a long time to heal completely, but ...I just didn't think about it. I'll see my BS Thursday and get his take on it. I hope he tells me the same stuff. 

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  • BrightEyes
    BrightEyes Member Posts: 27
    edited August 2010

    Thinking of you 4: (((Winterstorm, Robin, Lago and Sunny))).

    And Anne, I'm w/ you about the pain questions. "Interfere w/ normal activities?!?" grrrrrr... and the scars... my therapist pointed out that millions of women wouldn't get implants voluntarily if they ended up with horrible scars, which I suppose is a good point but... sigh... I'm glad sometimes, awful as it sounds, that dh doesn't see me like this..

    Thanks for the encouragement, Orchid.

    guysmom 

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  • Paula1231
    Paula1231 Member Posts: 456
    edited August 2010

    Poppy and Lovesnature,

    How are you getting along?  We three had surgery about the same time.  I just had my first fill yesterday and had the last drain removed.  I am healing nicely and other than advil am off the hard drugs.  I am returning to work on Wednesday as it is mostly sedentary.  I am still stiff on my left side and the posts are encouaging for Physical Therapy.  I am going to look into it.

    I am hoping you are both doing well and that things are (lol) normalizing a bit.  Not crying as much now and hopeful I can get thru the next part--treatment.  Not sure what will happen yet.  I have asked for the OncoDx testing and will pray for low numbers.

    Paula

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  • poppy12
    poppy12 Member Posts: 12
    edited August 2010

    Hi Paula glad to hear you are doing ok,glad you got the drains out they are a pain to carry around I have mine out as well,good that you can return to work but take it easy and dont overdo it, I am also doing nicely but am not having any reconstruction, still a bit weepy at times and dont know what sets me off but suppose it is natural to cry occasionaly, I get my results on friday but the BC nurse rung me this morning and said the results were in and that it had not spread to the lymph nodes and that I will probably only need hormone therapy so that is good news, hope lovesnature is ok as well,

    Hugs Celia

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  • lovesnature
    lovesnature Member Posts: 82
    edited August 2010

    Paula thanks for asking. I'm doing well, very well in fact. I too am off the narcotics, Ibuprofin is adequite. I saw the PS yesterday, we are going with first fill in two weeks. I was happy with that. I want to enjoy how good I'm feeling for awhile.

    Life is sweet, I am grateful for soo much.

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  • taranebraska
    taranebraska Member Posts: 129
    edited August 2010

    Today I am wearing a plain dark brown, v-neck knit shirt.  I AM FLAT.  Yesterday I wore a big purple plaid shirt that poofed out on me so much that my co-workers said I looked great! 

    I'm only on day 2 of being fully out in the world - and I'm showing off my "concaveness".  Not sure if that's a word but I'm living in the same world with Nancy - REALLY tired of all the varying kinds of advice out there - including in the chemo world.  If people aren't happy about my flaunting my BMX, go cure cancer then and stop staring.

    I'm bulking up on lots of anti-oxidants and natural supplements not only to get through chemo better, but to also have my body take care of any pesky cancer cells that may be still floating around whether chemo scoops them up or not.  Talk about varying theories from the medical world on that one.  I'm totally off caffeine (which sucks to get thru 8 hour day), working on really limiting the wine intake (sob) and doing mostly vegetables and a little grains.  I'm feeling okay, and want to get walking around the lake nearby that's 3 miles around it.  Haven't found the energy yet, maybe in a couple days when the next cool front moves in.  I'll be wrapped up in my compression tube top so my little bit of fluid doesn't jiggle.  Anne - thanks for the details on the draining.  Won't be opting for it.  Mine comes and goes, more on one side, then it switches, so I guess my body is taking care of it, just some days better than others.  Sucks to still jiggle when the boobs have been done away with!

    So happy to keep up to date with all of you.  We are wonder women.

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  • smurfiep
    smurfiep Member Posts: 33
    edited August 2010

    Hi everyone, I haven't checked in for a while. Tomorrow will be 4 weeks post  BMX. It's been a rollercoaster. I had a minor infection on my left and have been on antibiotics since 8/4 (first Keflex, then something else, and then Bactrum). I did amazingly well (took probiotics - no gastrointestinal issues) until today when I finally broke out in a rash. However, my PS says the infection has cleared up and we are good to go - no more antibiotics. Still have my wonderful seromas but the swelling is going down (feel great in the AM but start collecting fluid by noon and ready to take a nap). I am so pleased and yet jealous to hear how well alot of you are doing. I have to accept that everyone heals at a different pace and for me that seems to be slower. Have not had a fill yet because I had so much fluid. My PS asked me yesterday "How are you REALLY feeling?" and I just lost it because I still hurt from the swelling/seromas. He gave me a big hug and assured me that everything is going well and I am healing, just a bit slowly (he does 2-3 breast reconstructions PER WEEK so I really trust his guidance). I would love to keep checking in with this group to see how everyone is doing. I continue to pray for all of us, the girls having surgery today and especially all our girls with uncertainty about their next step/treatment.

     ~Smurfie 

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  • Nbb1032
    Nbb1032 Member Posts: 74
    edited August 2010

    Hi Smurfie (my surgery sister), Thanks for checking in and sorry you are having to go through so much.  I know that I have been very lucky to have such few complications.  The four week mark is sort of funny.  Things do not get better "every day" like they did for awhile.  I think maybe we are at a plateau.  

    Anyway,  today I saw the oncologist to get my Oncotype DX score.   I knew it was going to be high because they just test the tumor which for me was Grade 3 and 8/9 proliferation rate.   It was 63!  Yikes.  But when we did the numbers on the Adjuvant Online! site and typed in how small the tumor was (8mm) and the rest of the info (no nodes) it came out that I wouldn't benefit that much more from doing chemo (I think the # was 9%).  Anyway, he said he feels "comfortable" with my decision not to have Chemo  but I am starting on Arimidex ASAP and we are going to watch very closely - I see him again in a month and need to have another PET scan to doublecheck everything.  Not sure if I am making the right decision but as long as I have his support, I think I'm ok with taking the chance. 

    Tried to lift too many heavy boxes today and I am really hurting (I should have followed the 6 week rule) , so will sign off early. 

    Hope everyone's surgeries went ok and you are all back on the board very soon.

    Nancy

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  • Anne068
    Anne068 Member Posts: 176
    edited August 2010

    Oh Nancy... I was praying that your oncotype score would be LOW LOW LOW!!!

    You need to make the decision that is most comfortable for YOU! As we discussed, I don't think anyone really "knows", so trust your gut!! ((((hugs))))

    I was supposed to get mine today or tomorrow. I called, but they never called me  back. I guess I'll try again tomorrow....

    ((((more hugs))))

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  • ChattaChick
    ChattaChick Member Posts: 21
    edited August 2010

    Nancy -  I'm so sorry that your oncotype was that high, but I'm glad it looks like you have the option to forgo chemo.  Please keep us posted, and stop lifting those big boxes!

    I haven't updated here in awhile, but I started back to work last week exactly two weeks after my surgery.  I felt pretty good in the morning, but by mid-afternoon my co-workers seemed concerned about how I looked, so I went home early.  This week I've worked two full days so far, and by mid-afternoon my chest has been SO cramped that I felt like I had round bricks sown on my chest.  Other than that everything is tolerable. I have my regular appointment with my PS tomorrow and see if he has any advice.

    Oh, and when I saw my PS last Monday and they took out my last two drains, they also gave me a slight fill on both sides, but the right side hurt and so they had to stop.  Later it bruised above the right "breast" area.  Did they miss the port or something?   Anyone else had this happen?

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  • RobinLM
    RobinLM Member Posts: 143
    edited September 2010

    Morning - I'm a friend of Robins...she had her surgery last night and is up and awake and already cursing her ipad for its lack of cooperation. She just wanted to let you all know she's fine and on the mend.

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  • Halah
    Halah Member Posts: 352
    edited September 2010

    Hello ladies, I didn't sleep well after surgery while in the hospital. By 6pm asked for my morning coffee and it was the best cup of coffee I've ever had. I had this legging with the pressure to keep from developing clots. But I kept having to get up. The coffee (and the pain meds) made me happy and I did a couple of laps around the floor. I felt strong, just felt strange. I found lying down was painful, the gettingn up and down was hhorrible. I was either too hot or too cold.

    My chest looks horrible. Now I know why they call it practice when doctors "practice" medicine. Surely my surgeon new this was for real?? It looks so horrible. And to think I volunteered for this.

    The hardest part for me is getting up and down out of bed because I don't have a recliner. Do all of y'all have recliners?

    After I got home from the hospital, I went to the dining room to have dinner with my friends. They were not expectign me at all! But we had a good visit. Conked out at 6pm and woke up at 9am this morning.

     my surgeon did the snb but said that if it were positive for cancer, then I'd need more surgery??? Shouldn't it all have been done at the same visit?He said it would take a week to find out if there were any cancer in the nodes. sounds kinda retarted to me. what do you think?

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  • Carole66
    Carole66 Member Posts: 63
    edited September 2010

    I had to wait 2 weeks for my sentinel biopsy results. and was told Sentinal node positive so yes it is retarted. It could have been done all at once. Glad you are home already. I was in the hospital for 3 days because I was in so much pain.

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  • Pawprint
    Pawprint Member Posts: 464
    edited September 2010

    Hi Everyone...I went to see my oncologist yesterday. Went over pathology report and decided we would keep me on the pill Arimidex, gave me prescription for effexor for the night sweats and hot flashes.

     They are presenting my case to the tumor board because it was 100% estrogen and progesterone positive and HER2 negative which means it would respond poorly to chemo, but I had one lymph node that was positive for cancer when they did sentinel node and i also have  a 4 cm unknown tumor on my liver. Blood marker tests for liver and breast cancer will be repeated in 4 weeks. A CT liver scan will be done in 8-10 weeks. If liver tumor shrinks then they will know it was affected by Arimidex drug and was a spread from breast cancer and would then put me in mets and stage IV. If scan shows no change in liver tumor then it means its possibly benign growth or separate liver cancer unrelated to breast. The waiting is crazy...all the unknown. Lots of family history of cancer but BRCA was negative. Became part of research study for Mammo-print which looks at all genes and determines chance of recurrence. Mammo-print not back yet.

     Anyway, thats my story and today I am going to go back to work for the first time. My drive is long about 2 hrs. I have a beautiful office on the beach. I am a marriage and family therapist so I get to listen to others and get my mind off of me for awhile. Winterstorm I sleep in a recliner and it works fine but I think maybe with enough pillows you can make your bed comfortable. Best to all of you wonderful courageous women out there. Have a pain free relaxing day. Laughing

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  • leelee32
    leelee32 Member Posts: 9
    edited September 2010

    Hi I am a Hodgkins disease surviver as well and have just been diagnosed with DCIS due to the radiation therapy. I am going for my pre-op for bi-lateral mastectomy next week and lymphatic graphing few days later then the surgery. I am 32 years old and have 3 children and a wonderful husband but it is nice to be a part of this and find people who have similar situations. I just keep saying to my self to be strong this to shall pass!

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