Summer 2012 RADS HANG OUT

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  • ali68
    ali68 Member Posts: 1,383
    edited July 2012

    The good thing is we have very aggressive treatment, I got a complete response with my chemo.

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    My open wound at my lumpectomy site was getting larger so I went to my surgeon (actually saw his partner because he is out of the country) and he packed it for me.  My DH will have to pack it daily and hopefully it will heal from within.  The goal is to heal it from within and then use external sutures on the skin once it has healed enough.  It won't be pretty but at this point I don't care.  I just want to start rads and I have had so many complications!!! More with surgery than I did with chemo!  Ugh!

    Once again I was a good little patient while he was packing me but inside I was fighting back the tears! 

  • ali68
    ali68 Member Posts: 1,383
    edited July 2012

    Tina, I feel your pain I thought having a Lumpectomy would be a breeze but I was wrong.

    Hope your treating yourself good and I find a chocolate bar always helps.

  • Belinda977
    Belinda977 Member Posts: 381
    edited July 2012

    Tina, I had to deal with that too.  My husband and I both had a glass of wine before he packed it for me the first day.   The next day I decided I would do it.  It was hard because blood, etc makes me feel icky but surprisingly I got used to it.  The aren't suture mine close.  Just letting my body do it.  It will not be pretty when it's done...

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    ali68....chocolate sounds like a great idea!  Anything to lift the spirits!

    Belinda.....I think wine sounds wonderful too.  Since my surgeon is out of town I will wait to see what he suggests.

    This packing thing is a new level of love for me and my DH!!!  "In sickness and in health...."

  • pamelahope
    pamelahope Member Posts: 534
    edited July 2012

    Hi everyone! I am enduring neoadjuvant chemo. I need rads later. I will be getting radiation to lymph nodes, chest wall and superclavicle.

    Is the superclavicle stadard? What are the side effects?

    Does everyone get there thyroid injured? Do they protect the thyroid?

    Pam

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Nkb and ali68- I can understand your fears with your staging and node status..I am so sorry you both have to go through this. My MO told me he has a pt with near 30 pos nodes who is 10+ years cancer free...I say that hoping you will try to believe that there is no reason YOU can't be just like her. BELIEVE is a really great word...hope it's ok that I am saying so!

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Welcome Pamela. I get mapped Monday. Start RADS directly after.

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    NKB alot of those people with recurrences were young and didnt have chemo or rads.  Unfortunately young people tend to have more aggressive cancers.  If anything at all gets left behind after surgery it will come back if you havent had chemo or rads.  That is a risk they take when they think they got everything and didnt do more therapy. but chemo and rads works really well on getting those pesky little sneaky bastard cancer cells.  So even though you had it on both sides you are getting the most aggressive treatment and have an excellent chance of getting cured.  

    I did not have a complete response to chemo. I know this since I did neoadjuvant therapy.  I got some response though and injured cancer cells will hopefully be easy to kill off once i start rads.  I am looking forward to getting it started ASAP.  I hate the thought of any of that shit being left behind and starting to grow now that chemo is fading from my system.  I have an appointment with my MO next week.  My case is going to tumor board next week too.  My biggest fear is that they will recommend more chemo.  that is highly unusual though.  I got my port taken out when I had my lumpectomy 3 days ago too, so I sure hope I dont have to go through all that again.  I am getting hair back and dont ever want to lose it again, though I would of course do what i have to do to survive... They just let me know today that they found a fifth postive node damnit.  I hate cancer.

  • nofear2012
    nofear2012 Member Posts: 160
    edited July 2012

    I start rads on Aug 20th, get my mapping & everything the week before. Also called the boss & plan on starting back to work part time @ Sept 1st. Nervous about it all, but also looking forward to getting back in a routine.

  • nofear2012
    nofear2012 Member Posts: 160
    edited July 2012

    Jpmomof3 - does neoadjuvant therapy mean u had chemo b4 surgery? I am curious as to why u had chemo be4 surgery considering u tumor was small, if u don't mind answering?

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    They decided to do neoadjuvant because the area of DCIS was large (about 5cm) and I am small and wanted to do a lumpectomy.  My invasive component was about 2 cm. They were trying to shrink things up to make the surgery more likely to be successful.  There is no difference in survivor or recurrence rates with neoadjuvant and adjuvant chemo though.

  • nofear2012
    nofear2012 Member Posts: 160
    edited July 2012

    Ok now I understand. I hope/pray for u good outcomes from the tumor board.

  • Nkb
    Nkb Member Posts: 1,436
    edited July 2012

    Jp thanks for your response, it made me feel better. I want to be cured! Finish treatment, grow hair back, go back to work, stop being the sick girl. I hate this cancer and still can't quite believe this is happening to me. I think rads will be a challenge, I will be getting a lifetime dose to my chest wall and nodes and have a moderate chance of getting lymph edema, burns, fibrosis and prob have a poor chance of getting a viable reconstruction, these risks are of course worth saving my life.



    Did you know that you had positive nodes before chemo from a scan ? How did they decide to take 7 nodes vs doing an AND? So you are going to tumor board to see if you should change your current plan?

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    Nkb, I am right there with you. I am so sick of being sick and tired of being tired. Though fortunately the tired part is improving rapidly... At first I was dreading rads, and still am. It seems barbaric. But knowing that I only had a partial response to chemo has made me anxious to get it started. Rads is my friend. Rads kills DCIS which is more resistant to chemo. Bring it on. I hate the thought of the side effects too and the fact that we can only get so much radiation to any one area of our body. And the skin changes and especially the lymphedema. That scares me. But cancer scares me way more.



    My ultrasound showed enlarged nodes and my pet scan showed increased activity in my axilla. The they biopsied the node that I could feel and that confirmed the invasive cancer went to my nodes. I just didn't know how many until my surgery. They consider what they did an AND since they took more than just the sentinel nodes. The modern trend is not to do extensive ANDs anymore becuase they are not shown to change outcomes. It makes sense to me that it is best to get all the nodes out but it has been proven that it doesnt help to do that IF you are getting rads and chemo that is. I probably didn't even need to get those seven out. My surgeon wanted to stop at the sentinel node. But my husband and the pathologist pushed him to take more. The chemo and the rads kills cancer that is left behind. And since anyone that has a positive sentinel node will get chemo and rads these days.



    I don't honestly know why they are taking my case to tumor board. The treatment plan is set and it would be unusual to alter it. My big fear is that they might recommend more chemo. It would be unusual though. I just got my hair back enough to go topless, I would be devastated to lose it again. But I would do anything to make sure the breast cancer doesn't come back.

  • Nkb
    Nkb Member Posts: 1,436
    edited July 2012

    Jp. I was told that it is controversial whether to do a complete AND vs take a few and my surgeon told me that the MO treat people differently if they know that they have 12 positive nodes vs 5/5 etc so I agreed to AND. My MO says he is glad she did it and it does change his tx re aggressiveness and follow up. It may be that they are both in their 50s and more comfortable with this approach. I met someone who was 49 at dx did the chemo and rads and then went back for the reconstruction and they found one more positive node! She feared they would want to give her chemo again,mbut, they decided she'd had enough treatment.

    I thought rads if 4 or more positive nodes. Well, in my case there are no grey areas re treatment- I need it all. I am interested in what tumor board says.

    Yay to no wig!

  • ali68
    ali68 Member Posts: 1,383
    edited July 2012

    I was told I had to have all my nodes removed because I was grade 3. They said I had 9 cancerous nodes but they thought i had more they were very worried about the spread to other parts.

    Onco said she was more worried about the nodes than the breast lump. They did the test to see if a woman my age, no family history, when was your first chid.It came back at 99.06 % for not having Cancer.

    I have to find out when I can have the test to see if I pass this on to my three girls.

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    I had a full ALND wth two positive nodes. But I was unusual because they weren't sentinel (one was found on US, removed and tested pos while I was in the table). Due to them not being sentinel, but my SN's were neg, my doc recommended ALND. I agreed to him deciding while I was out. We still did aggressive TAC Chemo. The recoveey from ALND has been difficult...but I am so so glad that cancer is in a landfill instead of my body.

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    PS Ali68. I have no family history and did extensive research on BRCA genetic testing. My insurance wouldn't cover over age 45 w/o history. I learned for my age at 49 my chances for a pos test were less than 5% not much more than the general pop. Had the test anyway and it was neg. $3300 bucks but well spent. Lots of little girls in the family.

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    Ladies, you are right the AND vs No AND is still controversial. It seems counter intuitive that it wouldn't make a difference to leave cancerous nodes in the body. I don't like the thought that there could still be cancerous nodes in my body. It's quite disturbing. But I think they are finding that the chemo and rads are so effective these day that the ANDs are not as necessary as we think. The other way of thinking of it is even with the best surgery there can still be cells left behind when there are positive nodes especially. The less the better of course but we can take heart that the chemo and rads will get rid of whats left. So i don't think that one way is better than another, the studies show that they are equivalent.

  • jpmomof3
    jpmomof3 Member Posts: 643
    edited July 2012

    Stacie, I agree with you luckily my insurance paid for that BRCA test but I would have paid it gladly to know that this wasn't going to be passed onto my girls. I breathed the biggest sigh of relief when that test came back negative.

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Me too jp. Plus my doc said my recurrance would go up to 70% if BRCA positive and we'd need to do a BMX. Double sigh...

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    I repeat my Mugga scan tomorrow and do my RADS mapping. RO says no swimming so I went for a last dip in the pool. He said I can float on my floaty which is my favorite thing so that's cool. Nervous about RADS but anxious to begin this last stage of treatment.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Stacie:  YOu will be fine!  Good luck tomorrow.  

  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    good evening ladies!  Hope everyone is doing well. #4 done!  They have this down to a science!  Boom - in and out!

    Enjoying the olympics, the athletes are amazing! 

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    onvacation:  Am with you side by side, sister! Am watching the olympics too!  29 to go!

  • slak
    slak Member Posts: 179
    edited July 2012

    Hi all, I've got 28 done, 2 to go!  Over the weekend I just started to have some minor pain.  Nothing requiring any meds, but noticeable.  The redness from the regular (first 22) treatments is subsiding (turning more brown now), and now the boost area is apparent (redder than the surrounding tissue).  A little itchiness as well.  I was told by my RO that I could use 1% hydrocortisone if it got bad, but so far I don't need it.  The boosts go so fast that I can get in and out of the parking structure so quickly that the machine doesn't make me pay (bonus!).  

    I started Tamoxifen a month ago and so far no SEs, so happy about that.  

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Slak that is fantastic especially no Tamox SEs I am glad to hear it. I was scanned and stickered today. My RO is planning my RADS now. Just waiting for a call to start in a few days.

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    NBM Alert NBM Alert! Just sayin...a normal BM is cause for celebratin... It does get better post chemo c :

  • mt4ever
    mt4ever Member Posts: 105
    edited July 2012

    Stacie LOL!!!  I had my last TCH 7/23 and am still on the D-train but not too bad!  Would rather be on that train!!! 

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