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Comments

  • Fephna
    Fephna Member Posts: 45

    RMlulu I'm happy to hear LE appt went well and you have some relief!!



    canuck46 yay first rads done!! Today was #5 for me. I'm finally feeling comfortable(well not comfortable but know what to expect lol) the machine is intimidating as it moves around you.



    PatAlameda sorry about this infection. I had an infection after my csection. 2 small areas had to be open and packed everyday for infection to heal, and it did. Yours will to!



    ndgrrl I've read all your posts and you are a very brave sister!! Between the work issues and to have family members not well same time you are trying to heal. I thought my family was hit hard when my cousin was diagnosed with bc a month after me. The brac test, I remember waiting for mine. It determines so much. I also live far from my bs. I arranged ahead of time that she would give all test results over the phone just so I wouldn't have to travel just for that. My mo won't give any results over the phone. But her office is local for me. I had to wait a week for an appt to get my oncotype result and I knew they were just sitting there. So I know the frustration. And it doesn't always mean its bad news.



  • ndgrrl
    ndgrrl Member Posts: 645

    Summergirl== I will give you a boost up that wall if I can.

    I think I hit the wall with you and been weepy all night. I was talking to my cancer free sister(my 3rd sister died at age 44 with stomach cancer) saying I wish I could go back to June when hubby and I were celebrating our 25th anniversary and I didn't have to worry about all this SH**!! 

    I also want to turn back time.I think Cher had a song like that.. My sister is doing great after her bc surgery on Monday. but my brother poor thing got to get out of the ICU for a very short time and now he has fluid by his heart which they drained and he had phenomia in his left lung and surgery again on Fri to repack his wounds. He just can not seem to get a break and it really scares me- makes my situation seem like a walk in the park at this point :(

    Feeling beat up from that wall...

  • TeamKim
    TeamKim Member Posts: 301

    Awwwww Pat --- big HUG!!! Unreal, after all you have been through -- I feel for you!! ((((((HUG hug hug ))))))). I was wondering why I didn't see you turn up on the CT chemo site. Now I know.



    Summergal -- take that day. We all need it once in awhile. Take a walk, rent a funny movie, watch roller skating parrots on YouTube -- whatever it takes!! It can be hard to forget, but you can drive BC to the remote background of your consciousness if you concentrate on something that is unrelated. I know I get obsessed with researching my treatments and sometimes I just lose it. That is a good sign that I need to take a break. We've all been there!



    RMlulu -- So glad the PT treatments are helping with your pain and swelling. Thanks for posting so we all know what to expect if LE rears it's ugly head.



    Canuck -- yay first rad done! Cross those days off the calendar and keep eyes on the finish line!!!



    (((Hugs to all!)))

  • rmlulu
    rmlulu Member Posts: 1,501

    Hi Lumpies



    Here's a BIG (((((((((HUG)))))))))

    Yes, some days those big girl panties get in a wad...geezzz :(



    After my lx&snd 2 week check up, I took a 4 week vacation from c!

    I told everyone ask now, but after this date I'm in a no c zone...the break was much needed R&R

    Helped clear my head...walked...played...returned to life. It was a challenge, but I know my mind and spirit needed the break!

    I also did this after rads, a trip again a no c zone...for me it helped so much!

    I also made 60 sec video clips of my grand baby giggling and singing to me and other special clips to make heart smile.



    Celebrate your victories...each day living well!

  • Lee1963
    Lee1963 Member Posts: 10

    RMlulu,

    I am taking my lead from you! After my path report on Wednesday, I will understand it, share it with family and friends, then I'm on a cancer break. I will spend my time trying to get back into my life. The big girl panties I have all in a knot right now, will fit again! I know my next step will be oncology, but that could be 2 weeks or more away. My cat scan for my liver on the 10th of October will be just in time for my break. I will answer all of my family and friends questions and then that is it...I think I may actually go away!



    Thanks for the inspiration RMlulu!

  • bounce
    bounce Member Posts: 215

    Hi there ladies.

    This website is really a life saver - also a sanity saver.

    Every time I read the expression "big girl panties" it cracks me up, picks me up and reminds me that no matter how hard I hit the floor I am going to Bounce back!

    This time you ladies have been saying just what I was feeling!

    Ah, what an idea - to have a cancer free day!  Imagine not having to worry about the implications of different treatments.  Ha - some people actually worry about what they are going to wear.  We are worrying if Radiation will kill us or cure us or if we should take Tamoxifen and risk uterine cancer or skip it and risk breast cancer back! Plus a whole lot of other horrors I am not even going to mention.

    I cry when people are even slightly short with me and I cry when people are nice to me!

    I must say I have been having fun telling unsolicited telemarketers to please cross me off their lists as I HAVE CANCER AND DON'T WANT TO BE DISTURBED.  Shame.  I know they are just regular folk working hard to make a living but they aggrevate me and seeing as I too am finding it hard to tell people I know I have/had cancer I find it quite cathartic to actually say it aloud.

    To their credit so far every telemarketer I have told this to has apoligized for calling, wished me well and promised never to call back.

    I am working hard trying to take my own advise of not letting other people ruin my mood.  A family member believes I should be using natural methods ONLY to cure my cancer.  She has made it quite clear she thinks radiation will make the cancer come back.

    Maybe I can strangle her with my big girl panties.  Now that's an idea.Innocent Now imagine the halo flying off my head.

    Sending you all hugs






  • cakes
    cakes Member Posts: 89

    Bounce! Love your post as it hits a cord in my heart. I've noted even though we get down every now and then, the humor always shines through. What a special group of beautiful women.....inside and out.

  • Fephna
    Fephna Member Posts: 45

    Hi Bounce I let out a little giggle when I hear about the big girl panties to lol



    I have a question. Has anyone else's mo suggest an oophorectomy instead of ovary suppression (lupron) shot and no tamoxifen and take arimidex? This is my next step after rads. I'm 41 and no where near menopause yet. I am a single mom and I'm blessed with my 2 sons. No plans on any more children. Just worried about the shock to my body of no hormones so suddenly. I feel like all these bc treatment decisions are never gonna end.

  • TeamKim
    TeamKim Member Posts: 301

    Bounce -- LOL. -- I keep getting telemarketing calls from cancer groups -- started the day after the mammogram which revealed the calcifications the started this whole mess. Coincidence, I think not! I know they are just trying to help a nonprofit to do research, and we are all benefitting from their funded research. But Jeezzzz, give me a break while I am actually in treatment!! I confess that I get angry when they call -- the image of strangling them with my big girl panties made me chortle! Haha!

  • KR13
    KR13 Member Posts: 5

    fephna,

    I am scheduled to have an oophorectomy on the 11th. When I went for my annual check-up on 8/1/2013 the Gyno found a cyst on my left ovary, I have a history of cysts so this didn't alarm me, but after she did the breast exam and found "the lump" she became hyper and decided I had to have that looked at laparoscopically right away, she even went so far as to call me at work the next day and tell me I had an appt with an Gyno/onco surgeon THAT afternoon. It really pissed me off that she did this and I developed an attitude with her and needless to say didn't go to the appt. this was happening in the middle of diagnostic Mammo/us and 7 biopsies, and I just wasn't ready for something else. After my diagnosis was made my breast surgeon convinced me to have this checked out, (I am 55 and in menopause). He told me it would give me a better hormone therapy drug, reduce cancer recurrence of breast and chance of ovarian cancer to have them removed. So I caved and went to the Gyno/onco, who then decided I needed a total hysterectomy. I thought about this for a week and decided to confer with MO, he told me there was no medical reason to remove a healthy uterus for breast cancer, but he definitely recommended the bilateral salpingo-ooporectomy. So it is scheduled. I know you did not ask for all this info, but I just want you to be ready in case someone suggests complete hysterectomy to you. Good luck with your decision and keep us informed.

  • Fephna
    Fephna Member Posts: 45

    Hi KR13 thank you! All the info is great. We all have our journey which led us all here :) I also have a history of cysts. Last April I had a cyst removed from my left breast. That's why when this years mamo came back suspicious on my left again silly me assumed another cyst. But nope it wasn't.



    I have high er/pr I'm thinking that's part of the reason my mo suggested same as you bilateral salpingo oophorectomy. I had the consultation with my gyn last week. He did suggest total hysterectomy only for the possibility of cervical cancer. I too don't see why it all has to be removed. Hysterectomy is 6 week recovery and ooph 2. I've been home on temp disability since August recovering from lumpectomy with oncoloplasty. I can't be laid up for another 6 weeks. I need to go back to work in November. And my mo said I could take better meds after and skip the tamoxifen. The gyn was supposed to call today with a surgery date. I had to confirm with ro how long I needed to wait after rads. The fun never ends!! Lol



    I will be sending positive thoughts for you on the 11th and will look forward to see how it went.

  • KR13
    KR13 Member Posts: 5

    Fephna,

    Forgot to mention my tumor was also highly er/pr positive and this was the reasoning for the BSO, also my BS has not referred me to RO or MO for treatment until this is resolved because he didn't want them putting me on tamoxifen or starting rads yet. From what I have heard and read, the risk of cervical cancer is small, has long as you keep up with your annual paps, so I made the choice to keep my uterus and cervix, I feeI I have already had enough of me removed and I too don't want to be laid up any longer than necessary.

  • Fephna
    Fephna Member Posts: 45

    KR13 I agree about keeping as many body parts as possible lol my surgery was 8/1 and I saw mo 2 weeks after that. I am not on any meds yet. mo said it was ok to wait and see what tx I was having. So waited for oncotype test to see if I needed chemo first, and didn't. And for rads I had to wait 7 weeks to heal before that started. Today was 6/25. So I've felt somewhat unprotected all this time. Now I have to wait for the ooph. It's not like I'm looking forward to the meds I don't want a reoccurrence. I would ask your bs if you can go ahead and make appt with the mo for a couple weeks after ooph because sometimes you have to wait to get in to see them. At least that would be set.

  • rmlulu
    rmlulu Member Posts: 1,501

    Hi Lumpies



    KR13&Fephna - ah those choices...fight for body parts is right...keeping the girl:)

    My MO gave me a month break after rads so I could regroup and catch my breath after active treatment. It gave me time to work through the continuing SEs from rads and journal how I was feeling prior to HT.

    Mindset...active treatment removed and destroyed and HT exercise nutrition are preventative maintenance ...

    Best Wishes on ooph.



    Bounce - lol :D my BGP laughing their way into a thong!



    Lee - fingers&toes crossed for good path report with clear understanding and direction :)



    TeamKim - watch out telemarketers...would make a funny who dun it! The case of the attack of BGP!



    Summergal & ndgrrl - hope you made it over the wall! Sending calm confident thoughts and prayers...



    Canuck & Cakes- hope laser tag is going well...hydrate, free boobing, and emu oil! No 33 shades of pink! Does radiation make my butt look bigger...in the waiting room we would giggle...me protecting the girl and this man protecting his boys...my my



    (((Hugs)))

    Cindy



  • Momof3GreatKids
    Momof3GreatKids Member Posts: 285

    I only post here occasionally, but read all the time. I know everyone is different, but wanted to let you know that I ended up having a full hysterectomy about 4 weeks after I finished rads. I debated also and decided that if my surgeon, once she started the surgery with the DaVinvci robot, felt she could safely take out everything then to take it all but that if she felt she would have to switch and open me up to just take the overies and tubes. She was able to take everything and it worked out well. I was back working half time a week later and then back fulltime 2 weeks after surgery. I have a desk job. I was told by multiple doctors that I should just go for the total hysterectomy and I agreed as long as they could still use the robot to do the surgery. I am 43 years old and have not seen any major issues after. I have some hot flashes, but they could also be from the AI I am on since surgery.



    Everyone needs to make their own decision and there are never any wrong decisions, but I wanted you all to know my experience since it has not been bad.



    Let me know if you have any other questions.

  • ndgrrl
    ndgrrl Member Posts: 645

    HAPPY HAPPY DANCE!!!!!!!!!!!!  I finally heard back and my Braca is negative!! I guess after I called and left a couple probably pathetic, worried, anxious messages they thought they should call me and not make me wait until Oct 14 for those test results!! :)

    My sister had bad news, they did not get enough margins for her surgery and so now she has to go in and have another surgery and they couldn't get her in for a week. She is quite depressed over this, I don't blame her. :(

    My brother is still not doing great, he had to have a liter of fluid taken off his heard and he had pneumonia. Surgery again tomorrow to repack his wounds. :(

    Makes me feel guilty to have good news, but in reality my good news is also good for them as well, knowing that I don't have Braca- gives all the family a better chance its not in our genetic makeup.  But its still hard to happy dance when they are having such a bad time :(

    Thank you everyone for all the support, it has been wonderful to talk to people who "really get it" who actually know we are not losing our minds, maybe feel it at the time, but when we are banging our head on the wall, you have all been there to give us a nice reminder that there are better days ahead and that this has to be a step at a time process, one road block at a time.Talking here gives us the strength to take that next step to get around if not over that wall!! 

    Thanks so much.. Gentle hugs to all!!

  • canuck46
    canuck46 Member Posts: 62

    ndgrrl - You deserve a happy dance day.  Fab news about BRACA.  Prayers for your sister and brother that they too will join you in a happy dance soon.  We need to celebrate our victories be they big or small.  Gentle hugs to all,

    Marilyn

  • summergal
    summergal Member Posts: 65

    ndgrrl - !!!!!!!!!!!  YAY!!!!  So happy for you!!!  Isn't it the greatest feeling? Like, finally, some good news!!  So glad they told you over the phone and didn't make you make that long drive.  Hope you take some time to celebrate today!!! HUGS!

  • summergal
    summergal Member Posts: 65

    Anybody still having rib pain?  I had lumpectomies three weeks ago today and my ribs are still very tender, especially when I reach up.  Getting things off the top shelf at the grocery was very interesting today!!  Does anyone know why we would have rib pain after LX?

    On another note, I finally got my first appt with my MO.  I had been waiting since last Friday to find out when they could schedule me, and finally after a lot of frustration and worry, I called the Social Worker at the cancer center and (she could hear the fear and frustration when I started crying!) and she was able to s/w the MO and get me scheduled.  I told her that I felt like I wasn't on anyone's to do list in the medical community and she apologized for them having left me out of the loop.  That really lifted a weight that I've been carrying. 

  • bounce
    bounce Member Posts: 215

    Hi Summergal and fellow Lumpies

    Glad to know you got your appointment - its worrying about that kind of stuff that makes me crazy and frazzled.

    At the beginning of the week I couldn't find out if my Oncotype test had been approved or not as the doctor had gone on leave (to go to a conference so I will have to forgive her) and the receptionist told me to relax and not worry about it.

    I explained that I wanted to start Rads soon and didn't want to delay waiting for the results.  She assured me I could do rads and chemo together - no problems!!!!!!!!!!!!!!!!!

    Just the thought of it made me cry there and then.  I think at that point the receptionist took pity on me and said she would call me back and let me know.  (Luckily the test will be done.)

    During the time of my diagnosis the mammogram machine broke down and I waited 3 hours for the technician to come and to fix it.  Every other patient there went home - I waited it out so I could have the results that day.

    After that my BS went on vacation, my GP went on vacation, the second opinion MO (who I saw before the regular MO although I didn't have a complete pathology report - just to ask all my questions before having surgery as I didn't want to discover later I should have done something different instead) was going away on vacation the day after I saw him and the MO squeezed me in before she went to her conference because I think they realized I was going to have a major nervous breakdown if the appointment was delayed!

    I wouldn't be at all surprised to hear the RO is going on vacation or that the rad machine has gone on the blink!

    When all treatment is done and medication started - I am going on a mental vacation - a few days where I am just not going to think of the implications or long-term effects of anything.

    By the way - shopping is quite stressful for me.  I have good range of motion in my arm but if I don't do the physio exercises 3 times a day my arm gets tight and that funny spot between the two incisions hurts - like a dull ache.

    I have tried using a 1 kilo weight to do a bit of arm exercise but each time I use it - the next day my armpit area hurts.  Bummer.  I guess I will just take it slower.

    3 weeks is still very soon after surgery but why are your ribs sore at all?  Has anyone else had that after lumpectomies?  If you can ask the BS about it you should.

    I am a month after surgery and I still have a very hard area around the incision. Does anyone know how long it takes to soften up?

    I think I still have bits of stitches sticking out of the incision/scar.  Is that possible after a month?

    By the way - have people started to tell any of you that lemons, carrots etc. can cure cancer?  Even really clever, well meaning people don't seem to understand how hurtful it is to hear that eating 2 carrots a day can cure cancer when I am facing all sorts of medical treatments and their not so wonderful side effects.

    Imagine the look on the doctors face when I tell him I am cured because I am eating 2 carrots a day.  He will probably order some kind of scan to see if I have a brain or not. Laughing  (No disparagement to carrots intended - I eat them often cause I like the crunch.)

    Sending happy thoughts to you all.





  • summergal
    summergal Member Posts: 65

    Bounce - wow, you have really been through the ringer.  Sometimes it feels as if we've been put up on a shelf and they've all forgotten about us!  I will ask my BS about the rib pain. I, too, have little stitches still sticking out of the SNB incisions.  They're not as stiff as they were, which was causing them to rub against my underarm and irritate it.  Maybe they're starting to dissolve?  I also have hard spots under the incisions.  Boy if I didn't know better, I'd think I had a lump in my breasts!!  ;)  I hadn't heard about the carrots or lemons, but I have heard about turmeric and the alkaline-body diet to try and reduce cancer or create an environment in your body where cancer cannot grow.  And just as I managed to decaffeinate myself by drinking green tea, I learned that drinking coffee could benefit me because it leads to less heart disease, which I didn't know was a side effect of breast cancer!  I feel like I'm always peeling the onion.  One layer says "Pick lumpectomies/do rads" and then I peel another layer and it says "Rads will make your breasts smaller and harder, it will shrink your blood vessels."  Oh, didn't know that!!  Can't wait to find out what the next layer reveals  (insert sarcastic eye-roll here). 

  • Fephna
    Fephna Member Posts: 45

    Hi Bounce sorry to hear all the troubles you've had. They say oncotype takes 2 weeks but mine was back sooner. I just had to wait for an appt with mo to get the results. And don't joke about the rads machine lol..I did a week before, joking that once I get on the table it will break....and rads#2 was cancelled cause machine was down and rads# 4 as I was on the table and machine went to 2nd position bells were ringing, lights flashing. Well it broke again! I had to get dressed and go to the waiting room while they rebooted and tested it. 45min later I was back in realigned, X-rays again and finally finished. I do not joke anymore lol



    ndgrrl I'm sorry your sister has to have more surgery and your brother in not doing well. But today you should be happy about your good news. Cause it definitely is! :)



    summergal glad you got that appt!



  • Fephna
    Fephna Member Posts: 45

    RMlulu that sounds great to take a break from active treatment and ht. I'm going to ask my mo next appt if I can wait till after the holidays to start mine. Finish this year of surgeries and treatment, enjoy holidays with my family then start the meds.



    Momof3GreatKids thank you for the info!! I'm glad to hear the sudden drop of hormones didn't effect you too much. It's encouraging! I think that's my worry, the shock to my body since my er/pr is high. The gyn called today. Surgery is set for nov 6. I am sure I will have more questions but letting it sink in first..another procedure! Lol

  • rmlulu
    rmlulu Member Posts: 1,501

    Hi Lumpies!



    Ndgrrl - Yippee :) Happy Dance! You so deserve to take a twirl and click your heels! Sorry that your family is facing so many difficulties. Sending hugs and prayers to you sister brother the whole family...yes, we celebrate every victory!



    Rib pain, incision pain, ask your BS. My PT pointed out today that I need to use Vit E on my incisions to break up the hardness more ...pointed out spots...so will increase my efforts. I've not been as faithful...so now will work over the girl...hubby volunteered, but PT said massage!

    I think some pain may be related to the hardening of the scar tissue and radiated girl...so try massage and ask for a PT appointment so they can show you proper movement.



    Alarms going off :(. Rad machine was down for a week...door would not close...drove to another campus didn't want to lose my countdown...I can't even imagine being on the table and alarms and lights going off...oh my. Wow, I admire your determination to jump back up there! On gurney waiting to roll in for colonoscopy...earthquake...I was rattled, but could not get untangled to get off if I wanted too! Way to go warrior!



    Think I will wear my pink bunny slippers and munch on my carrots as I massage vit e on the girl while sipping on my lemon aide! Yippee ready for happy hour! LOL :))) I'm cured!



    (((Hugs)))

    Cindy

  • summergal
    summergal Member Posts: 65

    Mlulu - Cindy, you should write a book or at least have a column in the newspaper!  You always bring a smile to my face.  Thanks for always being there.  XOXO

  • TeamKim
    TeamKim Member Posts: 301

    Had my appt with PS today, and he says I am done with him unless I decide after rads that I want the non-BC girl lifted a bit to match up. As of now, that lift would be too minuscule to be worth the surgery, but we will see what rads does to the beautiful oncoplasty masterpiece! I start chemo on Thursday, will finish by Christmas, then start rads in January. MO says HT can begin during rads, but I like the plan of waiting until after....will have to research that.



    Ndgrrrl -- congrats and happy dance! You have had such a rough time, it is so great to read your good news!!!! (((((Hugs)))))



    Summergal & Bounce -- I know it is hard to be patient, but it takes awhile for the girls to get back to normal. I would say I had some pain (aches, zingers, incision twinges) for about 6 weeks. I travelled at 3 weeks post op, but I was still clutching the girl like a running back headed to the end zone! My range of motion took a really long time to return -- the shoulder hurt to raise arm over my head. BS said that we hold the shoulder still and tensed up as we try to protect the girl, so that is what makes it ache - could be similar to your rib pain. Gentle stretching, walking the wall in the shower, and trying to be patient eventually did the trick. All is normal....give it time.



    RMLulu, I still have a couple of hard spots in my scars -- will try the Vitamin e oil. PS said silicon strips can help scars too.

  • summergal
    summergal Member Posts: 65


    So, I'm wondering - we talk about our breasts a lot, but is anyone experiencing nipple soreness? Even if the fabric of my shirt brushes against them, they hurt. More so on the side where I had the largest tumor removed, but the tumors really weren't that close to the nipples. Still, I guess because of the cutting of nerves, maybe that's why they're painful. I hope that this isn't a lasting side effect. :(

  • bounce
    bounce Member Posts: 215


    Hay Summergal - weeks 3 to 4 after the lumpectomy my nipple was VERY sensitive. I would have to lift my bra away every now and then. I also had some swollen veins in the side part of the nipple and next to it. (I thought it might have something to do with the isotyope injections.)


    I am happy to say as I start week 5 after my lumpectomy that the veins are less swollen and the nipple is feeling better.


    Good luck.

  • summergal
    summergal Member Posts: 65


    Thank you, Bounce - that is encouraging.

  • canuck46
    canuck46 Member Posts: 62


    Bounce- the newest thing I heard was that iodine helps prevent breast cancer and thyroid problems and helps people taking radiation!! If I believed everything I read or listened to what "well-meaning" people were telling me I wouldn't be here now. (LOL)


    Summergal- My RO said to massage incisions to break up scar tissue that was forming on both breast and underarm incisions. Maybe that's what's happening but ask your DR.


    RMLulu - You still crack me up!! Love reading your posts packed with great info and lots of laughs! You truly are a "Godsend" to all of us. I would stand in line for your book if you decided to write one!!! Have a peace-filled weekend


    Hugs to all, M

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