Calling all Stage II Sisters!!!

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  • dj59
    dj59 Member Posts: 87
    edited April 2012

    Hi Betsy, Yes...I am sure it's not from the lumpectomy either...I think it may be my body's way of dealing with the stressful news. I feel fairly calm about it as this is the second time for me, but it is still stressful in an already stressful life.

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    59,

    I have had nausea and bone pain since learning chemo SEs include that. My 1st chemo is tomorrow. Laughing at myself.

  • dj59
    dj59 Member Posts: 87
    edited April 2012

    Stacie, That is awesome!! I know...gosh, our minds can really play tricks...can't they?

    You will do great. Chemo is crappy, but you will get through it!! I went through chemo in 2000 for my first bout of BC .... First couple of days were bad each time, then I would drag myself to dance class and teach...it actually made me feel better.  

    Hang in there!! 

    Dorrie

  • FLwarrior
    FLwarrior Member Posts: 977
    edited April 2012

    Hello all!

    Greetings and welcome to you ladies joining us, Cindyl, CatfromFL, dj59.  No one should have to go through this alone!  It is very good we are here for each other. 

    Cat where is Summerfield?

    Cyborg, good news on MRI.  Did the infection clear up?

    dj, wonder if the hot flashes could have been triggered by the anesthesia? 

  • FLwarrior
    FLwarrior Member Posts: 977
    edited April 2012

    Stacie, What kind of chemo are you having?  Are you getting the Neulasta shots the day after chemo? I did and I got annoying, but not bad bone pain from the first one(lasted 1 1/2 days), barely noticed it the second one and the last 4 never had any bone pain.  I hope you are as lucky!

  • itsgood2Bgiddy
    itsgood2Bgiddy Member Posts: 4
    edited April 2012

    This is my 1st post.  Diagnosed a month ago.  Lumpectomy 11 days ago. Negative nodes had me doing the "I don't have to have chemo" dance and had myself all geared up for 6 weeks of radiation.  Found out the margins aren't clear..... Oncologist wants to throw everything including the kitchen sink at this even if I have a mastectomy!  Wondering how I went from a one inch tumor with neg nodes and radiation to "no matter what kind of surgery you opt for, you have to have chemo".  Yes, I'm premenopausal - although just 2 months shy of turning 51 which is the average age for menopause - so how premenopausal is that really?  No family history of  breast cancer, although positive for glandular-type cancer in my Mom with pancreas cancer.  Getting a 2nd oncology opinion before doing anything.  I know 2 women with early stage CA that had mastectomy and neither one had chemo or radiation.  Reading many of the posts there seems to be such a disparity on the type of treatment done.  It's confusing.  And until today, was consuming my every thought for the past 6 days.  But Easter is coming Sunday, my favorite holy day - He is Risen!  I'm traveling with hubby and son to visit my sisters out of state, spend some time with friends in Myrtle Beach, and celebrate my son's 11th birthday.  So for a little while, life will resume some normalcy and I'll forget how really crappy the past few days have been.

  • Rockym
    Rockym Member Posts: 1,261
    edited April 2012

    itsgood2Bgiddy, Sorry you have to be here, but this is a great group of ladies and much of the information you will learn here can be better than all the doctors combined.  I'm sorry to hear that your margins weren't clear, but what about discussing this with your surgeon.  I've heard a lot of times that the BS can go back and get the rest... done deal.  Negative nodes are a blessing, but since you didn't mention your dx and the rest of your stats it's hard to know why an MO would be so aggressive with you.  As for the "you have to have chemo" remark.... bullshit.  You have to do what is best for YOU.  Have you had an Oncotype test?  BRCA 1/2 test?  Without an Oncotype test you don't know if you tumor would even react to chemo.

    All I have to say is 2nd opinions all around and FOR SURE speak to your surgeon.  My BS made it clear that he cut the tumor out right up to the skin so I would always have to let the MO or RO know why the pathology report was written the way it was.  And that is another thing... you can always get a 2nd opinion on your pathology report.  I had mine sent to Johns Hopkins because the pathologist kept calling my lymph nodes "possible lymph nodes" and then saying they were positive.  The word possible was part of what had me one foot in chemo and one foot out.

    Good luck and enjoy the upcoming holiday with your family. Once treatment gets rolling (regardless of which type), everything changes.  I still look at a picture of me and my family from one moth before surgery and treatment and hold on to that beautiful moment when my world was just a little more peaceful :-).  I know it will be again, but all in time.

  • Megadotz
    Megadotz Member Posts: 302
    edited April 2012

     Hi, itsgood2Bgiddy 

    Sorry that you need to be here, but  glad that you found us.   I think it comes as suprise to most us when we get diagnosed that Breast Cancer isn't a single disease, but that each tumor has its own "personality" with various attributes that determine what the most effective treatment.  As my medical oncologist (MO) reminds me, we're all different and there are no guarantees. Other folks early stage breast cancers may be quite different from yours.

    There's a section in main portion of the site that explains what's in the pathology report http://www.breastcancer.org/symptoms/diagnosis/  It will help explain what the various factors mean.  

    Tumors that estrogen and/or progesterone postive (ER+/PR+) respond to hormone treatment (tamoxifen or aromatse inhibitors).  The oncotype test Rockym mentioned is used to determine if chemo in addition to hormone treatment would substantially benefit treatment of  ER+/PR+ cases.   

    Since the  BRCA mutations are involved  with pancreatic cancer, you might want to explore genetic testing with your  MO.

    Getting a second opinion is a good practice.  Get a copy of your pathology report and read the understanding your diagnosis section of the main section.  Get more information from your treatment team about why the treatments are recommended.  

    Hang in.  Getting the treatment plan together is very stressful, once the plan is in place energies are a lot more focused.

    Have  a wonderful Easter 

  • itsgood2Bgiddy
    itsgood2Bgiddy Member Posts: 4
    edited April 2012

    Thank you Rockym and Megadotz for the encouragement.  Especially the comments about "having to have chemo" and developing a treatment plan as the stressful part - I'd like to think it gets "better".  Sorry about the lack of Dx - learning curveUndecided.  It should all be there now.  Yes I have my tumor in for Oncotyping.  I don't think I realized the BRCA mutation was a different animal from the oncotype.  I was told oncotyping would "determine risk of recurrence".  I heard nothing about it identifying whether or not chemo is effective.  I didn't have a good first visit with Oncologist #1.  I was not aware he was going to give me the path results from my lumpectomy - I went alone to that visit as I had called the surgeons office and told them I was going and was that ok? I was assured it was "just a consultation".  So the news was a huge shock coming from him.  Then he said "have to have chemo" for either a lumpectomy or mastectomy and I pretty much shut down.  Does anyone know if a 2nd lumpectomy can be treated with just radiation?  That was Plan A.  So why would that change just because it takes twice to get clear margins?  This is the million dollar question I am following up on.

    Anyhow, my surgeon is following up with Onco #1 to find out why he's being so aggressive with treatment, and speaking with Onco #2 before making the referral.   And we're waiting for Oncotype results. So I'm kind of in a holding pattern right now.  I did cancel the Oncology Nurse Chemo teaching class for now - I don't have enough info to make that decision yet.

    I've read all the info from both the Oncologist's and Surgeon's offices, but find I have more questions now than ever.  The surgeon is putting me on the OR schedule the week I get back from vaca - That's not going to happen until I have alot more answers.

    It turns out there is quite a sorority of breast cancer survivor sisters out there.  I got a call today from the wife of one of my husband's colleagues who went thru this 6 years ago. We had only casually met at a Christmas party once several years ago.  She was helpful and it was a good  talk.  It's also great knowing that while my hubby and hers are off to their regional headquarters for the week that my hubby is getting good counsel from hers!  I believe his advice regarding mastectomy was "Do you want to have her alive in the bed next to you or not?" LOL !

    Anyway, thank you ladies!  Now does anyone know the answer t whether it's possible to have a re-excision (2nd lumpectomy) with radiation? Or is chemo plus radiation the norm?

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2012

    itsgood2Bgiddy... I was 47 at DX and had a lumpectomy with clear margins but had a little bit of node involvement... you can see that I am very similar to you excet for the micromet they found in the one node. I thought that I was getting chemo solely due to the node, but my MO told me that the node got me two extra chemo sessions, and that he would have given me 4 tx of chemo even without the nodes... I think this is because I was young, like you... we're not 30 or even 40, but have a lot of years ahead of us. AND nodes are just one way that cancer can spread. It can spread through the blood or through the tissue. And since yours was already spreading through the tissue, he was covering his bases... If it were me, I would first have a second lumpectomy and see if they can get clear margins (good deep margins)... if so, THEN I would discuss what next. If not, then I would have a MX and see if that gets clear margins.

    After going through my path, which resulted in lump, chemo and then voluntary MX and no radiation, I feel that you can't look too far down the road but rather do the right treatment for today and then reassess. I would not have considered MX until I went through chemo and thought that I wanted to be as aggressive as possible so that I wouldn't need to have another year of cancer. I do not regret the chemo at all by the way. I worked full time through it and feel like I have kicked butt on any rogue cancer cells... It was the right thing for me, and my MO never wavered as to whether I needed it or not, and yet many women in my shoes may not get chemo. I am not willing to take that risk.

  • Megadotz
    Megadotz Member Posts: 302
    edited April 2012

    itsgood2Bgiddy -- I'm glad the information helped and things are coming more into focus.  You mght want to take someone with you to take notes at doctor visits or see if it's OK to record the conversation.   The information is overwhelming and it's easy miss things.

    If there aren't clear margins, there needs to be a re-excision to make sure that get existing cancer cells out.   Sometimes more than one re-excision is needed and it can end up as a mastectomy.

    Radiation  and surgery are known as local treatments -- they go after the tumor itself.  Radiation is generally required after a lumpectomy to zap any stray cancer cells that may remain in the breast.

    Wirh mastectomies, radiation might not be required, it depends on the specifics.

    Hormone treatment and chemo are systemic treatments that go after any cells that may have gotten into the blood or lymph system.  The oncotype test is to see if hormone treatment will be sufficent or you will benefit  from chemo.  It comes back as numeric score and there are ranges in the middle where it's a judgement call.

    Is there a nurse navigator or breast cancer guide associated with you hospital?  If so, take advantage of talking with them.  They are good focal point for questions and can help you with all sorts of things.  The main section of bco has a wealth of information and many of the sections have FAQs about the most common questions we have.

    You're right about the sisterhood -- a cousin who was diagnosed seven years before me called it "the most supportive sorority that no one ever wanted to join."

    We got your back.  Enjoy your vacation. 

  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited April 2012

    Am I crashing the party by being a guy? I'm a Stage II as well, but I'm just not one of the "sisters" as the subject line suggests.

    I finished chemo just before Christmas and am trying my best to get my life back on track. So far, so good. 

  • jemije5559
    jemije5559 Member Posts: 54
    edited April 2012
    Hi Charles. So sorry you have to be here, but welcome. Itsgood2Bgiddy, I agree with Megadotz, if you have access to a Nurse Navigator, take advantage. I found mine invaluable. She really helped me understand the process--still is, as I'm not through yet. I got lucky with a low Oncoscore, and that with a MX and neg nodes, allowed me to opt out of chemo and rads. I'm 61, too. Will be on Arimidex after MX and reconstruction. There is no single way or formula--many ways for many different subtle issues. The oncotype takes about 10 days after the tissue is sent.
  • jemije5559
    jemije5559 Member Posts: 54
    edited April 2012
    Itsgood2BeGiddy I meant to add that I had a lumpectomy 3/23 with unclear margins, re-excision with unclear margins, and after tumor committee review, a MX was recommended due to the specifics of my margins, my cancer, and the fact that Mammos, US and MRI had not correctly diagnosed or sized my tumors. I am now having a MX rather than going for another re-excision. These things can happen. It seems like maybe you are struggling with something I struggle with--there is so much out of our control when we are diagnosed. It all happens so fast, and for those of us who have even more unexpected things happen (my tumor was seen as 9mm on US but much to surgeons surprise, was 3.5cm when she got in there) like unclear margins, it gets even more frightening. I like clear answers and with this sneaky disease, there just aren't any.
  • Megadotz
    Megadotz Member Posts: 302
    edited April 2012

    Charles, welcome.  Chemo is more than enough initiation for anyone, now if I could only remember the secret handshake Laughing

    Cheers 

  • dj59
    dj59 Member Posts: 87
    edited April 2012

    Hi All,

    itsgood2Bgiddy, looks like the ladies have already given you lots of great information here. And you sound like you are getting a handle on things. I think there are always more questions with this whole thing. Just remember...it's your body and your life...you are in charge - this group is well armed with information to help you along in your journey. Taking some time off to enjoy Easter this weekend is a fabulous choice.

    I remember the first time I was diagnosed in 1999....up until that day, everything about my body I understood and trusted. I even knew exactly when I could get pregnant and, when I was ready...did ( sorry Charles for the girl talk Embarassed)...but when I got that first diagnosis, I felt like my body had completely betrayed me. That really caused me to feel like I did not have control anymore over anything. Took me a long time to get past that feeling.

    This time - taking it one step at a time and trying not to let it overwhelm me. So far so good. This group is amazing. Everyone here is so knowledgeable about their own situation, and they all have information and experience to share with the rest of us.

    This sisterhood (and a few brothers like Charles added in) is sadly large, but we band together and help each other through the rough moments.  

    I struggled through the first diagnosis mostly on my own. Did not get involved with a support group. Big mistake. Support through this battle is necessary. Support from people who speak the same language priceless!!

    Charles...you are in the trenches with us .... brother Sealed

    Cheers to all!!

    Dorrie

  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited April 2012

    Ladies, I do not mind the "girl talk" at all. I am a husband to a great woman, a father to a terrific daughter and women play a huge role in my life. It's just that, as far as breast cancer is concerned, I never expected to become "one of the girls." 

    Oh well, such is life. Carry on. Thanks for counting me in. I am honored to be part of the club. Still, to be frank, could you people come up with a better - and far less brutal - initiation rite? Chemo truly does suck. But here I am. 

  • itsgood2Bgiddy
    itsgood2Bgiddy Member Posts: 4
    edited April 2012

    Thank you everyone!  I was reminded about my breast navigator by the friend I spoke with the other day - geez was that just yesterday? Anyway, I guess I wasn't sure if she was in it for the long haul, but obviously she is.  I will get in touch with her when I return from vaca.  Busy packing so will TTY'allL.  HAPPY EASTER!!!

  • itsgood2Bgiddy
    itsgood2Bgiddy Member Posts: 4
    edited April 2012

    Thanks for the laugh Charles - I'm already appreciating the "cancer humor"!  And thanks for saying it like it is - I so do NOT want to have chemo.   I went thru it with my Mom's pancreatic cancer = and that chemo has somewhat fewer side effects than compared to the drugs used for breast cancer. Not to mention my almost 11 year old son does not want a bald Mom, he's already a little embarrassed I'm the only Proudly-Wearing-My-Silver-Tresses Mom among his schoolmates Mom's.  Oh well, better bald than dead!  Still, I'm praying for a low Onco score.

  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited April 2012
    yeah, itsgood, I think the whole bald thing was a lot easier on me than on women. Half the time people just thought I was trying to be a hipster.

    It's all coming back now, though... albeit silver now, too. Oh well.
  • vballmom
    vballmom Member Posts: 426
    edited April 2012
    Charles, I've seen your photo I don't know how many times and it never even occurred to me that the baldness was from chemo!  Embarassed
  • Charles_Pelkey
    Charles_Pelkey Member Posts: 182
    edited April 2012

    Hee hee. VBallmom, it is indeed from chemo... well, in a way. I actually did research and decided to shave my head in advance of my first round of the "Red devil" because I didn't want to go through all of it coming out in patches. I had - and now have - a full head of hair. Following the trim job, I did have a fine cap of stubble, which came out over the next couple of weeks (along with my eyelashes and eyebrows).

    Check out the picture from the barbershop. I posted it on FaceBook and one of my younger clients posted a comment that he thought it was cool "because I'm the only guy I know whose lawyer has a Mohawk!" He was disappointed to see I went for the full skull. Maybe I should have opted for the Mohawk. It would have made a nice first impression at the infusion clinic, eh?

     

    The really wonderful thing is that my family was there for the big shave, as were two of my closest friends who happen to be natural "chrome domes" themselves. 

  • vballmom
    vballmom Member Posts: 426
    edited April 2012

    I kinda like your mohawk here!  Glad it is all back now!

  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    Charles u do have nice hair,

  • dj59
    dj59 Member Posts: 87
    edited April 2012

    Charles, that photo is FAB!! 

    This is my second round with old BC, but don't know my treatment fate yet.  First time was in 1999.  I went through the first 2 rounds of chemo and managed to keep my hair intact .... Thought, maybe, I won't lose it. HA!!   Third round....one night, while teaching dance classes, I felt like something was pulling at my neck - figured I had my ponytail too tight..so loosened it...with that came a huge handful of hair....The next couple of days proved that Chemo had won the hair battle.  So, being an old punker from way back, but never gutsy enough, at the time, to mohawk it...I had my hubby do so....I tried to insert the photo here...but couldn't seem to do it...oh technology.

    Anyway...for an hour or so...I bounced around the house singing Clash songs and doing my best Joe Strummer...then I shaved the rest off.

    Had a drummer friend who loved to rub my bald head for good luck. So it came in handy.

    We'll see what happens this time!!

    Hey...gotta find the fun moments Cool

  • Cindyl
    Cindyl Member Posts: 1,194
    edited April 2012

    Yes. Nice hair!  I too don't think chemo when I see a bald guy... 

    I had thought that if I had to do chemo, I'd do a mohawk or something really wild.  But the oncotype said I wouldn't need chemo, so I'm leaving my hair alone.

     

  • dj59
    dj59 Member Posts: 87
    edited April 2012
    Cindy, Yay!! no chemo.  Smile
  • Cindyl
    Cindyl Member Posts: 1,194
    edited April 2012

    Thanks dj59.  I'm thrilled.  I start rads next week and hope to have it behind me before summer.  I never thought I'd feel so lucky in the midst of cancer treatment.

  • dj59
    dj59 Member Posts: 87
    edited April 2012

    Cindy...it's the little things Wink....

    After my biopsy, back in Feb, they suggested that RADS and Arimidex might be the ticket ...then, when I had the lumpectomy, they found that the tumor cell grade was 3, not 1, and the tumor was a bit larger (3.5) than suspected. Waiting on the oncotype and seeing my MO, on Monday, to find out if that will still be enough .....

    I do dread the idea of chemo again.  12 years older...working full time....it will definitely zap me more I this time .... but fingers crossed.

    Dorrie

  • Cindyl
    Cindyl Member Posts: 1,194
    edited April 2012

    Dorrie.  I'm keeping my fingers crossed for you too.

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