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  • hopeful34
    hopeful34 Member Posts: 1,569
    edited May 2010
    I just started reading this thread and noticed there are quite a few women on here who were not only diagnosed around the same time as me, but are very close in age and occupation.  I am 34 years old and I am in my last year of nursing school (or at least I was before the diagnosis)  I am hoping to go back to school in January to finish.  Anyway, I agree with you GAgirl01...knowledge is sometimes worse when going through this.  I feel like I have become a hypochondriac and I fear that I will be forever now between the cancer dx and the side effects from medicine.  I haven't started any kind of tx yet, but I am having a bilat mast on 5/21.  Unfortunately, this is the third  date they have given me.  This last time they said my surgeon was really ill for the first time in 23 years and would not be able to do the surgery, so I went to meet a new doc....YAY!Undecided  I do know that I will be having chemo and taking tamoxifen, but I don't know when yet.  Wishing everyone here well and hope to get to know everyone better.
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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    "This disease sucks" is in my signature!!!  I got a promotion from DCIS to IDC recently.  Stupid Stupid recurrence!!!  Sorry to see you joined the club.  Maybe you can use some of your expertise in look good feel better for some of the ladies here on the board!!  When I start chemo, I'm going to use it for sure!

    Best of luck and FIGHT FIGHT FIGHT!!!

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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited May 2010

    Well - here I am, day 2 after second surgery. This one did take a little more out of me maybe because it came only 10 days after my first surgery.  My head is still a little foggy, but I think I'm doing good. A little more pain than first time, but nothing unbearable. I will see my doctor on Monday and he said he should have the pathology results then.  I'm a little scared about that.  It seems like since this journey started just a few short weeks ago that each time I have a procedure done, my pathology gets worse. I'll check in next week.

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  • in_cognito
    in_cognito Member Posts: 429
    edited May 2010

    Hopeful - nice to meet you!  Yes, it is such a coincidence that we are all around the same age and in the same profession.  Being a nurse makes things better and worse I think.  Sometimes ignorance is bliss.  Good luck with your surgery - hopefully the date sticks for you and they do not bump you out anymore. 

    Kittycat - wow - I'm sorry you already had a recurrance.  How did you find it?  Was it along the scar?

    Sherry - Good to see you again.  I'm hoping for better news on your pathology!  This disease is just a mind boggling experience - just wait, wait and wait.  Hopefully once you get the final pathology you will feel like you are moving forward with treatment. 

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  • CalypsoGirl
    CalypsoGirl Member Posts: 31
    edited May 2010

    Leanna, I hope you don't have any major SEs with chemo, but I thought I'd share some things that really helped me.  Taxol gave my neuropathy in my hands/feet.  I took Gabapentin for a while, which helped.  I also used an "active mud for face & body" on my hands/feet (a clay type facial/body cleansing mask - mine was "Borghese from Costco").  I would massage, then let it dry for 5 mins before washing off with warm water.  It was very soothing!!  In addition, I used Epson salts in my bath, since like the clay it helped with the inflammation in my extremities.

    Chemo also gave me cancer sores, so for that I recommend a prescription dental paste: triamcinolone 0.1% (generic for kenalog in orabase).  You only need a tiny bit (on a Q-tip) and let it dry for 20 secs.  It's the best fix for cancer sores that I have ever found!

    Finally, I immediately got vaginal sores when I started AC... Painful!!!  For those I was prescribed nystatin ontment 30 gm (generic for mycostatin).

    tory, well the tamoxifen is no fun for me, especially at night... I wake up feeling like I'm on fire... Then I can't fall back to sleep, so I take Lorazepam 1 mg at bedtime every night.  I hate taking meds, but sleep deprivation is no fun either... You do what you have to... It sounds like side effects vary among women.  Let's hope you don't notice a thing!!! 

    My thoughts & prayers are with you all.

    LOL, Kathy

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  • kittycat
    kittycat Member Posts: 2,144
    edited May 2010

    Sherry - I had 2 surgeries 7 days apart, so I understand your fogginess!!!  Good luck on your next path results.  I hate the waiting part!!!!

    in_cognito - I found a few small lumps on the outer side of my right breast (9:00), which is where I had my initial cancer (which was DCIS).  The lumps were small, but the margins were positive.  so, my BS had to go in and take more tissue.  Luckily, the next path results came back negative (and in the nodes too).  Everyone is baffled by this because I had a bilateral mastectomy.  All of the doctors are saying they've never seen this.  So, I am seeing a 2nd onco here in Vegas and one in NY at Sloan Kettering. 

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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited May 2010

    `I am looking forward to getting my final pathology. The waiting is so difficult. I feel like once we know exactly what we're dealing with, I can begin treatment to fight this ugly beast.  Up until now, I don't feel like I've taken any steps to get rid of the cancer. I'll have to start reading in the chemo forum soon so I can llearn all about that next step.  The women on here are amazing.  I have received much knoweldge and encouragement  - someone who understands.  Thank you.

    I have a question about my left arm - the side where they took out the nodes.  Ever since my surgery, my upper arm from the elbow up is numb and tingling.  It's not numb enough to where I can't feel it and the tingling is annoying.  I assume they had to cut some nerves to get the nodes out. Do you know if the nerves regenerate after time and this will go away, or is this just another element of bc that I need to get used to?

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  • CalypsoGirl
    CalypsoGirl Member Posts: 31
    edited May 2010

    Sherry9316, those nerves do regenerate.  After my sentinal node dissection in 2002, it took a good 1 year & 1/2 to feel completely normal.  Sometimes I'd feel like a pinch or even sharp pain (probably those neurons firing), but it gradually got better. 

    I'm sorry to hear about your margins... I think about 50% of women have to go back for more surgery... AND IT SUCKS!!  Been there too.  Waiting is horrid.  It's exactly as you said, once you're actively dealing with the treatment your mind is appeased!

    I'm praying you get good news!!!  Take care, CalypsoGirl

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  • amoncada
    amoncada Member Posts: 2
    edited May 2010

    Hello there. I was diagnosed on September 11th, 2009. I have IDC as well, and am HER2 positive. I had a double mastectomy three weeks after my diagnosis, and finished chemo on April 1st. When you write about how chemo is going to be an emotional roller coaster, you are correct, but please try to remember that it will not last forever. Yes, chemo is horrendous. Drink LOTS of water and accept everyones offers to help you. Kiss vanity goodbye. I didn't even know I was vain until my hair fell out. As far as my breasts, as my sister said pre-surgery: "It's not like you're really going to look that different." Keep your sense of humor above all. I wish you well.

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  • Sherry9316
    Sherry9316 Member Posts: 294
    edited May 2010

    Went to doctor today for post-op.  He would not remove my drain because there was still too much fluid coming out - BUMMER!  I told him I felt like a cave woman because I had not been able to shower since my surgery because of the drain.  He put a waterproof bandage over the drain and said I could shower now.  Thank you.  Pathology, not such great news.  2 of the 10 nodes were positive.  But no more surgery for now.  It's on the onocologist and the next chapter in my journey.

    I am also bummed about my port placement and the scar.  The port actually sits right under my bra strap.  Right now while it's still tender, I have to keep my strap off to the side.  Not sure if that will improve or not.  And the scar from the port placement is out on my arm so that if I wear a sleeveless top, it will show.  And it's a big scar too - 2 inches or so in length.  I wasn't prepared for that.

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  • in_cognito
    in_cognito Member Posts: 429
    edited May 2010

    Sherry - Glad to hear you can shower now!  I bet you will feel so much better after a shower.  Please do not be discouraged about the lymph nodes - their job is to catch the cancer and chemo is a way to wipe everything else out!  When is your appt with the Onc?

    Amoncada - I am not looking forward to the hair loss at all.  I would rather lose an arm than my hair, but I've resigned myself to the fact that chemo will save my life - my hair won't!

    Kittycat - what can I say, that just simply sucks!  How are you going about seeing an Onc at Sloan?  My sister in law wanted me to go to the Mayo clinic or Sloan but I wasn't sure how I go about doing it - plus I can't afford the flight and accomodations right now. 

    Calypso - Thanks for the tips for Leanna - I am jotting down notes in a folder I have on things to get to prepare me for chemo. 

    I have my lumpectomy scheduled for 5/27.  I'm starting to freak out - I've never had surgery before. 

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  • CalypsoGirl
    CalypsoGirl Member Posts: 31
    edited May 2010

    in_cognito - It sure seems like it to me that you have been brave !!!  So give yourself lots of credit on my behalf!  I hope you don't need any of those tips, but it can't hurt to have them.

    The one thing that helped me each time I had to have surgery was knowing that I could handle all this madness better than I could handle seeing my little kids go through major surgery...  It took away my fear.  I thought, "I can do this"...  So far I've had 5 surgeries (25 hours worth)... Can't wait for my LAST surgery!!  Maybe at the end of the summer...

     Tell your anesthesiologist that you want to pick a spot before he/she puts you under, a place to go dream... Wherever you like... I mainly picked a warm spot on the beach!  Not surprising when you live in Colorado... No beachfront property here!

    You'll be in my thoughts on the 27th!

    Sherry9316 - sorry to hear about your pathology report & your port placement, but please don't let it keep you down!

    Take care. LOL, CalypsoGirl

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  • tory
    tory Member Posts: 149
    edited May 2010

    Thanks, Kathy. So far I'm plagued by awful menstrual-like cramps, but no hot flashes yet...

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  • CalypsoGirl
    CalypsoGirl Member Posts: 31
    edited May 2010

    Tory, Sorry to hear!  I didn't realize those were on the list of tamox SEs... Sadly the list is LONG!  Hope those awful cramps are gone!!!  Take care, Kathy

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  • tory
    tory Member Posts: 149
    edited May 2010

    Kathy - the onco hadn't heard of cramps as an SE either, but I don't know what else they would have been. I'm not near my period, though I could have been ovulating. He did acknowledge that we never know how our bodies are going to react, and they've since subsided, so I'm just shrugging my shoulders and still dreading the hot flashes.

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  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited May 2010

    Hey Tory  -  I'm trying to find what you are on, but can't.  I've had 2 treatments of Taxol and Herceptin, and I also get awful stomach cramps, usually days 1-3 after. I am eating activia everyday, drinking tons of water and taking 1-2 stool softeners every night.  Also wiping with baby wipes after I go to the bathroom, because it burns if I don't!!  And, dear hubbie and I are starting to think about our sex life for the first time since treatment started... so went out and got condoms and some other stuff (wink, wink...).  Sorry if TMI... but hey, you are ALL my sisters now!  :)  I'm continuing with positive mental imaging and imagining the cancer cells shrinking and dying... tumors getting smaller... hoping when I get to surgery, it will be a lot less than estimated before!  I've been working a lot too.  The hospital has been wonderful with me - I work 3 night shifts as charge, so minimal patient contact and I'm doing some requisite time on the AF base for my Reserve duty.  I will be taking a break from the military job the end of June until I'm NED (which I will be!!!  one day.... :))))) 

    A biggie for me is still having to tell my friends and family... I still get very sad at knowing how sad they must be for me (does that make sense)?  And, many of my distant friends (you know phone calls a few times a year...) well, haven't dealt with most of them yet!  I want to tell them, but still sometimes when I try to talk about it, I get too emotional to talk. 

    I love my port, but have yet another huge bruise because she had trouble accessing it before infusion Thursday! 

    Hope everyone has a great weekend!!  Ryan has a track meet tomorrow - and Sunday is open for family day - and school is almost out - then we'll head to Disney (in between Thursday infusions, of course!). 

    <3 you all!!

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  • tory
    tory Member Posts: 149
    edited May 2010

    Hi Leanna - I was fortunate enough to be able to skip chemo and am on week 2 of Tamoxifen.

    It sounds like you have a LOT going on! I hope you get some rest.

    I had trouble with how to let people know too, but I finally decided that it wasn't about them and there just is no good way to say it, so the people that I hadn't told personally or who hadn't heard by word of mouth found out through a fund raising email I sent out for the Race for the Cure. (Family members got the info from my mother, thankfully, so she gets all the questions, not me.) I got a lot of very nice, very warm responses (and donations!), and a shocking amount of silence. Maybe they felt I wasn't personal enough in my notification, maybe they didn't read the email since it looked like I was just asking for money, maybe they just don't care. I don't know and I was very sad about it. My best friend from high school was one of those people and there's no way I could not respond with SOMETHING ("gee it sucks that you have cancer") if the tables were turned, so I don't understand it, but I also can't dwell on it. If I weren't passionate about the fund raising thing, I think I probably would have just not told many, or waited until I was in a "cancer in the rear view mirror" kind of place, if there is such a thing.  After that particular experience, I came across this: http://www.circusofcancer.org/HTH-01.html and thought, yeah, how do you tell people THAT?

    Anyway, best of luck with that difficult task. Remember that you need to focus on you and not on them, because you might not get what you need from them. People are weird, and many, for whatever reason, just can't deal.

    Oh, and thanks for bringing up sex. I was just thinking the other night, that for all the honesty and bluntness that goes on around here, I haven't heard too many people talking about things like crying the first time they had sex post-mastectomy (me). I have the most loving, supportive husband a person could ask for and I truly believe that he loves me no matter what I look like, but I still missed that damn breast and there was nothing he could do about it. But even that beats abstinence and it will get better.

     Phew. I'm worn out from all that talking. Sweet dreams, everyone!

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  • in_cognito
    in_cognito Member Posts: 429
    edited May 2010

    Hey Leanna!  Good to see you!  Wow, you are working - my onc doesn't want me to work while I am doing chemo so I figured I would just draw disability (heck I paid into it all these years!).  My onc is afraid of me catching things doing patient care.  I could possibly do relief charge nurse, but I'd have to coordinate everything with the current charge to see when she would be taking off, etc., and I think it would be a bigger pain in the long run.  Good for you on the visual imagery - I've been trying to do that as well.  I've been listening to a few cds and doing affirmations - not as often as I'd like to though. 

    You sound like you are coping a lot better than I am!  I told most of my close friends verbally and sent emails to others that I do not keep in touch with, but wanted positive thoughts from.  Just when I think I have a super positive attitude about beating this, a friend will email me telling me how sad she is for me and my family - and for some reason that makes me sad and my positive attitude goes out the window. Then I go into these dark thoughts and I just hate feeling that way. 

    Have fun at Disney!  And I'm glad you and hubby are getting on with your sex life!!!  You go girl!  Have a great weekend!

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  • KorynH
    KorynH Member Posts: 301
    edited May 2010

    tory-

    it gets better? when ? Cry

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  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited May 2010

    Tory - ah, side effects from tamoxifen... I still have those to look forward to also... but that's a ways down the road.  I know what you mean about your friend not responding.  I have had people not say anything to me, and I know they know.  The big one was my ex (my daughter's father).  We had to let him know because we were telling her, and well, we knew she would have questions when she was with him... we opted to tell him and his wife via email (mind you, I have a child with him and was married to him for 7 years... albeit a long time ago)... and do you know the jerk didn't even have it in him to hit 'reply' and type, that sucks.  His wife did, but he didn't.  Guess there's a reason we're divorced... obviously!! 
    And, I know that I have the best husband in the world now!!  I think maybe you are right - maybe she didn't read your message. ??  I would let her know another way. 

    I'm sure the sex will get better (it has too, right??!!) ;)

    In-cog - I don't know if I am coping or denying... it's a fine line right now, I think.  I still go to that dark place too!!  I chose to 'try' and work while I am on the taxol and herceptin because it has fewer side effects than the AC and it's what they put me on first.  I have disability but it's 6 months of all or nothing (it starts after you are out of work for 2 weeks) - and I think I will go out after I start the AC, which I will be on for 3 months, then having surgery after recovery from that, so that puts me out another 2 months... basically, it comes down to the fact that I knew I wouldn't be done with all this treatment within 6 months, and I had the easier regimen first.  I wear masks when I contact with patients and my blood counts are still good. 

    Hi Koryn!  :)

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  • jblcsw10
    jblcsw10 Member Posts: 174
    edited May 2010
    Gosh I feel like an elder on this group (I'm 56) but I am new to the club and someone directed me over here...However I'm young at heartSmile and have a 13 y.o. daughter so maybe I still fit in! I had biopsy 5/11, and found out 5/17 I have IDC & DCIS. I had DCIS 9 years ago with lumpectomy and rad. I have not even settled on a surgeon yet, this past week has been a whirlwind of research and phone calls. Just figuring out who to use for treatement is challenging. I am normally a pretty balanced person, but I find myself emotionally vulnerable and have shed quite a few tears this past week. I love what someone here said about strong people still shedding tears. Thanks for that. I have received incredible support from family and friends, and someone mentioned to me how strong I am (I sure don't feel it) and my response was I am strong because so many people are holding me up, and that is what is getting me through right now. Tomorrow I meet with the surgeon who did my biopsy to get the MRI results from this past Thursday. I have not been given additional pathology report yet to indicate whether this IDC is ER/PR + or -. Hopefully I'll learn that tomorrow too. Thanks for all the info here. Jane
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  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited May 2010

    Hi Jane, and welcome (boo).  :)  It took a week to run my ER/PR tests, and 15 days to get my HER2 status... original biopsy was equivocal (which is a result between 1.8 and 2.2), and they had to send it to FISH, which for me was another 8 days.  It's amazing how you don't want to deal with this, but you are forced to read and research and think about surgeons!!  I actually switched surgeons after my 1st biopsy, because my gut didn't like him!  :)  I am very happy with that decision and feel I would have regretted staying with him just because I started with him).  Of course, I didn't have a 'breast surgeon' before (who does!!).  You sound very strong!  I know for me, if someone looks at me wrong I cry these days, and I'm not a big crier!  I hope your MRI results go well and you get all your receptor answers so you can start focusing on your treatment plan.  How's your daughter - have you told her yet?   Leanna

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  • tory
    tory Member Posts: 149
    edited May 2010

    Koryn - I guess I can only speak for myself, but it has gotten better. I'm supposed to be doing scar tissue massage and tonight I let DH do some. It wasn't my first choice, but I have to believe and accept that he accepts me as I am. It's hard if I think too much about it, but if I can just be in the moment (and in the dark), I do okay. But then again I'm also pretty used to not being comfortable in my own skin. I gained a fair amount of weight through my pregnancies and haven't managed to get rid of it, so this is sort of just one more thing I have to not focus too much on. I know we'll be presented with new challenges after my 2nd mx & TE placement, but I'm not thinking about that now either!

    Jane - everyone's welcome here to the club no one wants to be in! Hang in there!

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  • tory
    tory Member Posts: 149
    edited May 2010

    Oh, one more thing - Leanna, the other possibility is that your ex just doesn't know how to handle it or what to say. I've been trying to give people the benefit of the doubt. My ex (no kids, but 6 years of marriage) was floored. I actually felt bad for having sent an email because he seemed so stunned by it. I thought my dad was going to start crying when he found out I didn't have to do chemo. And I had a tough-guy Army friend of mine who's about to go to Iraq for the FOURTH time say he teared up. I think that would be tough for many men to admit. Oh, and another male friend was afraid to tell me he's in love in a new relationship because he wasn't sure it was appropriate. I told him good news is ALWAYS welcome. Anyway, I think my point is that we can't know why other people react the way they do and I personally don't feel I have the energy to worry about it. For once I'm fine with everything being about ME and not what everyone else thinks or feels.

    Or, he could just be a major jerk. Laughing

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  • in_cognito
    in_cognito Member Posts: 429
    edited May 2010

    Hi Jane!  Welcome to the club!  Keep us posted on your tests/results!  We will all lean on each other and get through this together!

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  • CalypsoGirl
    CalypsoGirl Member Posts: 31
    edited May 2010

    Hi Jane, Sorry you are having to deal with bc all over again!!!  My first diagnosis was in Oct. 2002, DCIS like you.  I had mx with free-tram flap.  Then in May 2008, second dx, this time invasive... It's tough & a ton to process, but take it one day at a time!  I suppose you might not get all the details (pathology) until your actual surgery.  Is your bc a second primary?  Will your docs do genetic testing?

    If you're interested in a support group for your 13 yr old daughter, looks like there's a program for children whose parents have cancer at "The Wellness Community".  Their new location is in Bradenton 410 4th ave east, across the st. from Manatee Memorial Hospital.  It's called "Kids Count Too!"  The Sarasota # is 941-921-5539.  I'm not familiar with this non-profit, but you might check it out after you get your treatment laid out.  My kids have gone to a support group called Kids' Alive here in Denver for the past 2 years (daughter 11 & son 13).  It's really been great for them!

    Keep us posted!  Hang in there!!! 

    Tory - Don't dread those dreaded hot flashes!  Perhaps they may never come!  Hoping that's the case!!!!!   Smile

    Good to read all your posts!  I'm going to try to follow your suit & think positive thoughts!!!  Sometimes feel like I'm running on empty... Two years of "sucked in & spit out"... One thing after another... Seems like forever!

    You all take care! LOL,  CalypsoGirl

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  • Edsluv
    Edsluv Member Posts: 8
    edited May 2010

    I am glad to finally make time and check in!!! Just finished reading all the post and am left with a sense of contentment......I'M NOT ALONE & MY FEELINGS/CONCERNS/WORRIES ARE SHARED. Since my last post I've met with The Plastic Surg, Radiation Onc, & Genetics.....pleased to announce BRCA 1/2 results are "NEGATIVE!!!!!!." My diagnosis was confirmed on 4/27 and I am "impatiently" awaiting surgery. Initially I decided on Mastectomy with immediate reconstruction , then found out the plastic surg was leaving the country for 3wks (as of last Monday.) In order to get things rolling I then decided to do the lumpectomy, but even with that decision(since only the BS will be involved, not plastics) ...I've been given a 6/24 surgery date. I'm very confused......... Since I have to wait that long what is a few more weeks if I go back to my original choice of Mastectomy (wait for the return of Plastics)????? I hope that any of my "sisters" on here can give me some feed back. In addition I feel "LAME" for going back and forth with this "decision."

    On another note, I've enjoyed reading the "TMI"  blogs...hee hee these are concerns I too am having, so I'm glad that "EVERYONE" is sharing all their true feelings!!

    Not sure , how I've been making it through these past weeks without logging in.........I'm feeling much better, just knowing I have you ladies here for support!!!;

    Blessings & Hugs always,

    EdsLuv  

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited May 2010

    Edsluv,

        Glad your bracca test is neg, I wouldnt be too worried about waiting the extra couple of weeks to do the MX probably wouldnt make any difference just that the waiting is really hard, If you trust this PS then i would wait for him to return. Glad to see you are back and posting, you are in my prayers and thoughts- Just to let you and all the newbies know that you can only post 5 a day untill you reach 50 or somthing like that, If you reach your 5 and have some more questions you can pm me or any one as much as you like,

    warm wishes

    debbie

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  • CalypsoGirl
    CalypsoGirl Member Posts: 31
    edited May 2010

    EdsLuv - BRCA  1/2 NEGATIVE is WONDERFUL news!!!!!!!!  Don't feel lame about going back & forth on your decision... Nothing lame about it!!  There's no right or wrong answer here.  There's so much information to think about & digest!  Waiting a couple weeks won't make a difference either, so take your time.  When do you have to go back for your next chemo?

    in_cognito - How did your surgery go today?  Thinking about you!  Let us know when you can!

    Hugs, CalypsoGirl

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited May 2010

    in_cognito, sending you lots of ((((((((((((hugs))))))))))))))))))))

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