Need a radical mx due to muscle involvement. Need help!

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lalady1
lalady1 Member Posts: 618

Had a single MX on 1/30/13, with an expander. Just got path back which showed a whopper 12.1cm of IDC. (9.1 +3). Yikes. I am a single business woman, 50 and not easily shook. But this did it. I will listen to all fellow 3's - ladies should I have radical mx next or chemo and then radical mx? I wanted to save my lymph nodes, but that sounds impossible now. The expander will have to be removed too. I need to run/oversee my business somehow too.  Need your help. Please.

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  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited February 2013

    I would start chemo sooner instead of delaying it. Residual tumor isn't a bad thing. They can track it to see if the chemo is working. Plus the revision surgery after can give u a lot of info on how well u responded to treatment.

  • fredntan
    fredntan Member Posts: 1,821
    edited February 2013

    Think you have to wait six weeks to heal



    Has your doc said they want togoback in?

  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2013

    This is just my opinion and not an educated one...I think I would do chemo.  I feel like it would go ahead and take care of any stray cells that might be floating.  Plus, it would help shrink anything left and give you better margins at surgery.  I'm sorry you have to lose your TE but it can be done later, it's more important that the BC is taking care of now.  I agree with MMM, I did chemo first and was able to see my tumor shrink and soften, it was very reassuring to have it tracked.

  • lalady1
    lalady1 Member Posts: 618
    edited February 2013

    Yes, Dr said she wants to go back in to remove pectoralis muscle along with lymph nodes. Can chemo kill cancer cells in the muscle? Is there a way to know it shrinks? My MRI did not show a 12cm tumor - so leery of how chemo shows shrinkage? Sad to forfeit my TE, but agree with jennyboog about BC. Anyone have a radical mx? Surgeon wanted to have another operation quickly, but then said it might be easier for chemo using both veins now. What does that mean?

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited February 2013

    An MRI/us combo post MX should show the cancer in the muscle. The point of chemo is to get all floating cancer cells in your body. Not fun but it can be effective. I started chemo 3 weeks after my umx. Sorry for the short answers Im using my phone.

  • MMSS
    MMSS Member Posts: 103
    edited February 2013

    I would suggest talking with both a radiation oncologist and a medical oncologist before you sign up for more surgery. Frequently if they know that the tumor is that large before surgery they will do either chemo or hormone therapy to shrink it before surgery so that the more radical procedure is not necessary. It is too late for that but it is still possible to shrink it out of the muscle with chemo and possibly the nodes also. Then you can do radiation for anything that remains. Each specialty has something to contribute and it is better to talk with them all before you go with everything that just one can do.

    I also had a tumor that went in to the muscle but hormone therapy got it out and I got by with a simple mastectomy and a sentinal node disection. The node was positive but since the tumor is not highly aggressive we decided to just do the radiation and let that deal with the nodes. My surgeon was comfortable with that and it is what I wanted. Good luck to you. This may not be nearly as bad as it sounded at first. We all hate to get bad path reports but you have only checked with part of your team. See what the other doctors have to bring to the table.

  • lalady1
    lalady1 Member Posts: 618
    edited February 2013

    Thank you MiniMacsMom and MMSS! I do not want to lose all my pectoralis muscle if chemo kills the IDC cells in muscle and skin. I am an active girl - that's me behind the sled dogs in my avatar (wonderful trip to Alaska). How was Aromasin treatment? Did you lose your hair? I see the oncologist on Friday. What questions should I ask?

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • Kay_G
    Kay_G Member Posts: 3,345
    edited February 2013

    My tumor was invading my pectoralis muscle on MRI so I did chemo first, then modified radical mx (no muscle removed). Chemo did a good job, surgeon was able to get good margins. Then I did radiation to the chest wall. I would think chemo first too.

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited February 2013

    Yes some tough choices. I was in shock when I found out about my cancer too and when the GS suggested chemo to shrink the tumor then surgery and rads I totally freaked. I had never heard of chemo BEFORE surgery and it totally blew my mind.  So after consulting with Johns Hopkins the BS there said, no, lets do surgery then chemo and rads.  Thinking they were the best I went that route.  Now in hindsite I wish I had done the chemo first.  I had to wait 7 weeks to get in to surgery at JH and when my pathology report came back my primary tumor was over 6.5 cm and had 13/15 positive nodes with extracapular extension.  Damn it hindsite is 20 20 isn't it?

    Any how, get lots of EXPERT opinions and trust your gut.

    Keep us posted,

    Sharon

  • lalady1
    lalady1 Member Posts: 618
    edited January 2016

    Thanks for info Day, Kay and pupfoster. Had MRI at Cedars (which only detected 3cm lump not the other 9cm), PET (negative), bone scan (negative), 2 lumpectomes and now a mx at UCLA (the best!), thus starting chemo to kill cells in the muscle sounds better than losing my pectoralis! Ugh on losing hair and strength via chemo -hoped to avoid the mass kiling of all fast growing hair and throat cells, BUT killing cancer cells in the muscle is better than losing it. Need my muscle for pets, work, (publishing and film budgeting) gardening, sports.  No one ever told me chemo before surgery, so doing it now before final surgery. I'm seeing an oncologist on Thursday.

    Will keep you posted. Any thoughts on kind of chemo? Some better/worse than others?

  • Momine
    Momine Member Posts: 7,859
    edited February 2013

    Lalady, I think the chemo regimens are fairly standardized at this point. In your favor is the high grade of your cancer. It is very likely to respond well to chemo. 

    I had 4X FEC and 4X taxotere. The docs were most scared of the FEC, but I had very little problem with that. On the other hand, the oncs all thought taxotere should be a breeze, except it wasn't for me. Nothing particularly awful happened and I was fine, but I felt much more tired and out of sorts than I had on the FEC.

    My point being that it varies wildly from person to person. My best advice is to take a deep breath and one step at a time. When you encounter problems, even seemingly minor ones, ask your doc. Most oncs these days are ready, able and willing to help with the SEs.

    Only other advice I have is to take probiotics. It helps the intestinal problems (which can be quite awesome, but not in a good sense) and it helps against thrush. I was also given neulasta after each chemo. That way my blood counts never got completely awful.

  • Outfield
    Outfield Member Posts: 1,109
    edited February 2013

    lalady,

    Regarding the PP's comment about how long  you have to wait after surgery to start chemo - ask your surgeon and your MO.  The PP had to wait 6 weeks, I waited less than 3.  It's going to vary by doctor and by your general health status and healing.

  • lovujja
    lovujja Member Posts: 119
    edited February 2013

    lalady,

    It's one year for me. I had chemo, surgery and radiation. According to Onco i have low grade, my tumor didn't shrink a lot but did work some how. I was not sure if chemo was good for me but my onco assusred that it will kill if had spread around. Neulasta is standard now, that maintains blood count. I had surgery after 3 weeks of chemo. Chemo made me tired (i have two little children) but over all i did fine. I tried to eat things that prevent constipation and maintain my liver health. Magic mouth helped a lot to prevent mouth sore (i didn't get mouth sore). I had chemo every other week, first 2 days were worse every time i had chemo. Now they offer low dose oral chemo too (mayo offer me that but  i wanted to be done faster)I also talk to radiation dr, surgen, plastic surgen before i started chemo..

    Looking back, I feel i made a good decision. My suggestion is get chemo and it also gives you time to what kind of surgery you want to do and you can do by the time you are done with chemo.

    lovujja

  • lalady1
    lalady1 Member Posts: 618
    edited February 2013

    Just back from my onco - will start chemo after drain is removed (sometime next week). My chemo "cocktail" will be taxotere and cytoxan (6 rounds every 3 weeks).Then a 3 week break, followed by radiation for 4 weeks (5 days a week). Then take Arimidex for many years. Dr was encouraging in that chemo will spare my pectoralis muscle, but cautioned that this aggressive cancer will either end my life in my 50's - or I'll live to be 90. Will keep you all posted. Very glad to be starting chemo, and did not think I'd ever say that.

    Any of you try this cocktail?

  • Shari0707
    Shari0707 Member Posts: 448
    edited February 2013

    He said that? I don't even know how I would take that to mean...bit lets go for 90's.. Such a random jump in age numbers though...

  • Outfield
    Outfield Member Posts: 1,109
    edited February 2013

    Shari, it's not too different from what an oncologist said to me.  She told me "these big aggressive cancers usually recur early if they're going to recur."  Another one of those stomach flop moments, but has it's good side. I don't know if there's data about that, other than triple negative BRCA+.  I vote for 90 too.

  • lalady1
    lalady1 Member Posts: 618
    edited February 2013

    Yes, and I took it (same as Outfield) that these aggressive cancers get wiped out by chemo and/or recur early, otherwise I'm here for a good long time. So on that note went to the Mississippi Grammy party tonight and loved me some Northern MS Allstar blues!

  • Shari0707
    Shari0707 Member Posts: 448
    edited February 2013

    Sorry didn't mean to sound insensitive.. Here's to wiping it out and living to 90 and then some!

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