Calling All with Tumors 6 cm +

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  • luckypenny
    luckypenny Member Posts: 150
    edited February 2012

    Thanks lago. I am so glad I read this thread. Any little trace of hope I cling to. My path report says tumor size 9cm with 30% being dcis. I don't go back to onco til april so I will ask him then. Until then however I will think positively.

  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited February 2012
    Yes, I think having them up the tumor size would be great!  I remember being very depressed that I 'had to' choose the largest number, and my tumor was even bigger than that (7 point something... wow, don't remember anymore)... I thought, I'm a goner!  Undecided
  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited February 2012

    I also want to be able to include my tumor size since 16 cm is seriously underestimated by 6+ cm.. Someone earlier posted about zometa. I'm going to see my oncologist next month for routine visit. I would like to consider this. I realize that I'm missing the timeline done in the study and that I also had AC/T but data was tantalizing.

  • shells43
    shells43 Member Posts: 1,022
    edited February 2012

    I have been worried on and off about the quality of my path report. I feel like it is not very detailed. It just says IDC so I am assuming 9.7 x 9.2 x 4.5 cm is ALL IDC? Does anyone know about vascular invasion? My report does not say anything about it. I am assuming that it means "vascular invasion = negative". Does omission mean its is negative?

  • J-Bug
    J-Bug Member Posts: 626
    edited February 2012

    Elizabeth1959: There is a lady in my original chemo group who is just starting Zometa and is talking about it a bit in the July 2011 chemo thread on the most recent pages. Her "codename" is rabbit. It is interesting to read about.

    shelleyj43: I don't know about the vascular invasion, but I would think so. Mine is simple like yours. It just says IDC as well. I think they just list what they find and nothing else. They would not want to say "negative" to other things because all they know is that for all the tests they ran, these are the things they did find - BUT I am totally guessing.  

  • lago
    lago Member Posts: 17,186
    edited February 2012

    shelly the path report I received from my onc was more detailed (and the final path) than I got from my BS. Maybe just ask for the final path… explaining that the one you have isn't very detailed

  • goforhope2011
    goforhope2011 Member Posts: 47
    edited February 2012

    Thank you, lago!  I'm checking into the sites.  I appreciate your help.

    All the best, Hope

  • Ca1Ripken
    Ca1Ripken Member Posts: 1,254
    edited February 2012

    I had 2 separate path reports... biopsy did say LVI - Negative... but after mast report said LVI - positive... so, I think they put it either way... maybe what Lago said that it'll be on the final path report. 

  • anneflorida
    anneflorida Member Posts: 59
    edited February 2012

    I had a 8 cm tumor which my surgeon told me was the size of a baseball.  I am a large breasted woman and so had surgery first since there was room for clear margins.  I was happy that I had very large margins clear.  My path report reported vascular invasion which I think means that it had entered the blood system as well as the lymph system.  I have significant lymphadema which is due to the radiation that I had under my arm.  They gave me radiation on my chest wall, above the clavicles, under the arm, and in the middle of my chest to get the inner mammary gland.  At this point, I feel great and my PET scans have been clean.  Only due to the goodness of God.

  • shells43
    shells43 Member Posts: 1,022
    edited February 2012

    Hey thanks for your replies about path reports. I have two, one from my biopsy, and one following surgery. I think it is the "final" one. I'm going to assume that no mention of LVI means they didn't see any evidence of it. I think it just freaked me out (it still does) having such a large tumor.

    My mom said the BS came out after surgery and told them the tumor was "encapsulated" and that was "good" but I can't really find anything about encapsulated tumors in the journal literature either. I guess that i am desperate to put the best face on an ugly situation!

    Welcome Ann in Florida! I am in the town of LegoLand!

  • lago
    lago Member Posts: 17,186
    edited February 2012
    Shelly the path from your surgery is more accurate than your biopsy. The biopsy can only take small samples and they can miss parts of the tumor. I know when I got my path from my BS they told me it wasn't final  yet but I think that's because they were still waiting for the HER2 test. Granted it tested positive in the biopsy so I didn't expect that to change. My onc gave me my final path in my chemo training binder.
  • Fytnlykeagirl
    Fytnlykeagirl Member Posts: 15
    edited March 2012

    Anneflorida, did you have any chemo? Did you have a masectomy or reconstruction surgery?

  • lago
    lago Member Posts: 17,186
    edited March 2012
    Fytnlykeagirl From some of her earier posts it looks like she did do chemo.
  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited March 2012

    I am thinking I belong here because witih multifocal involvement the entire area affected is 9 cm. I can hardly grasp it but I'm trying. Made the choice to do bmx.Trying for calm but today was rough!

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited March 2012

    IndigoMont11

    No reason you should feel calm.  Breast cancer is scary business.  I'm so sorry that you have to go through all this.  I think right now is one of the worst times when you realize that this is the path you have to go down.  For me, the emotional toll was more difficult than the physical trauma.  Please let us large tumor ladies support you.

    Elizabeth

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited March 2012

    Thanks I sure need it.  I have been able to cope OK until today.  Not just the reality of surgery sinking in (I didn't know before today if I'd have surgery or chemo first).  I hate being laid up, ugh, but I keep coming back to the idea that I don't want to regret not taking care of it now before something else happens.... And like I posted elsewhere, my hubby is having a hard time with the idea, but I am standing my ground.  Not that it is easy....

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited March 2012

    Oh, and during the marathon surgeon appointment today (I was there from 10-1), I asked about neoadjuvant chemo and he said, in my case, since my cancer is HER2 negative, shrinking the tumor in hopes of avoiding a mastectomy were less likely, and he didn't think it was worth doing to prevent cancer from entering nodes (so far, w/o surgery yet, all the scans have said the nodes look normal.  So not doing that.

  • twistedsteel
    twistedsteel Member Posts: 156
    edited March 2012

    So sorry, Vicki. I hate being part of this sisterhood.... But I LOVE the sisters here. I wish you didn't have to go through this crap. I am so glad they think your nodes are clean. That is awesome.



    We are here in your corner. Ask anything. Whine, bitch and moan. Be happy, be depressed. Be optimistic or pessimistic. Cry or scream or laugh til it hurts. We have all been there, we have all done that and we get it. It is frightening and confusing and anxiety ridden and just plain NOT FAIR.







  • anneflorida
    anneflorida Member Posts: 59
    edited March 2012
    Fytnlykeagirl, I had my mastectomy first, chemo, and then radiation.  I am on Femara now.  I chose not to do reconstruction because I did not want more surgery- breast reduction on other side and then reconstruction.  I did talk with plastic surgeon and found out my options but was not interested.  I wear a breast prothesis that some warned me would be heavy and hurt my back and shoulder but that has not been the case.  I really don't notice it and I have bathing suits that it fits into and I can still snorkel and ride the waves at the beach.  I have another PET scan in April.  My oncologist is going to continue to do them yearly for a while.
  • lago
    lago Member Posts: 17,186
    edited March 2012

    IndigoMom the beginning is the worst. I had to wait 6 weeks post biopsy to get that thing out. I did the bmx, and yes it was scary but I was so relieved after it was done. Like a big weight was lifted. Cancer was removed. You won't be a laid out as you think. I had my surgery done late Tuesday. I think they finished at 8 or 9pm! I went home Thursday.

    Friday people were calling and shocked that I was the one answering the phone and sounding like me. My sister can in that Friday, again shocked to see me dressed and looking normal. 1 week post BMX I went to the  hair dresser to get my hair washed. My stylish who has known me for 13 years asked me if I had surgery yet.

    I know it's hard to believe but it's really a relief to get the surgery and the cancer out.

    BTW I'm all done now. Life is good. You will get there too.

  • Ossa
    Ossa Member Posts: 919
    edited March 2012

    Indigomom..I second what twisted steel said

    I had chemo first (to Shrink tumor) Then Mastectomy, Just finished Radiation.. Have 5 Herceptin treatments left ( Her2+) and recon (exchange surgery as I have tissue expander in now) It is all doable.. Keep in mind  They are doing it for you not to you.. I found this saying to help when I was feeling crappy.

    This too shall pass.

    Hugs

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited March 2012

    Hi all, I can't tell you how much your feedback means to me.  I can't believe it but somehow I did actually sleep last night, and early this a.m. hubby and I held each other and cried and talked for awhile.  I think we're working on it.  Poor guy. 

    Btw - at the risk of sounding like I'm stealing someone's quote - the Hope quote in my signature line is from author Vickie Gerard, from her book There's No Place Like Hope.  I couldn't figure out how to italicize her name - but she deserves the credit (and if you haven't read the book, you'd probably like it).  Anyway, my real name is Dianne - but Indigo is a long preferred screen name.  Either one works for me!!

    Iago, were you a fit person before your surgery?  I'm not a smoker or drinker and my health looks like it's perfect except for the cancer, go figure.  However, after losing 30 pounds in 2004, I did what I *said* I would not do and gained 25 pounds back.  My big plan for this year was to work on improved fitness.  The bunion surgery derailed me a little bit but I'm back to taking good walks.  I just hope I'm fit enough to heal like you!  If the bunion surgery was any indication, the first week after that was the hardest too, and I ended up having to wait to take a full shower until the stitches were out in 2 weeks. 

    Ossa - I remember the 1980s band Chilliwack!  Are they still around at all?

    Doing it for you, not to you... I can remember that!!  I'm just trying to convince hubby.

  • Ossa
    Ossa Member Posts: 919
    edited March 2012

    Indigo

    Yup the band Chilliwack is still around.. they do a few guest appearances.. Don't believe they tour anymore  .... My Girl,,, crazy talk.. to name a fewSmile

  • lago
    lago Member Posts: 17,186
    edited March 2012

    IndigoMont11 Yes I was in good health. When my onc gave me the sheet that showed all the statistics for doing chemo at the top it had my name and  "heath= Excellent" I had to laugh… excellent except for cancer.

    I had been working out including some strength training although I was not by any means muscle bound. My pecs were starting to show and I was about 7lbs thinner than I am now. I just put on 7lbs since January. Happens every winter. Should start to come off in April. The last 10 are so hard to lose. I'm working out again my my arm are not as strong because of LE. I have to work slowly. Lower body is doing well. I started up again in February.

    I have always power walked except for the last month or so of chemo.

    Having strong stomach muscles really helped me. I had nodes removed on both sides so I couldn't use either arm to help me up for a while.

  • goforhope2011
    goforhope2011 Member Posts: 47
    edited March 2012

    Hi just found out my tumor was 12+mm!  Have I won?  Not really confident in reconstruction, esp with scare on silicone transplants.  Anyone have any different kind of reconstruction?  Would like to know as I see my ONC soon.

     Thanks, Hope

  • lago
    lago Member Posts: 17,186
    edited March 2012

    What scare on silicone implants? Are you talking about possible complications if you have radiation?

    This is not my PS but she has a good explanation of all the procedures available except for the one type that is done at the Miami Breast Center.

    Types of reconstruction: linky
    Miami Breast Center: linky 

  • goforhope2011
    goforhope2011 Member Posts: 47
    edited March 2012

    lago, thanks will look into this with my ONC.  The scare was leakage of silicone into the body.  The implant  was created by a company that is now under investigation.  This info came out in the news --nov-dec 2011.

    Take care, Hope

  • anafoefana
    anafoefana Member Posts: 164
    edited March 2012

    Indigo and hope, sorry you are here.  It stinks, especially in the beginning when there are so many unknowns.  You will feel better and it will not be as overwhelming as you begin your treatment.  Who knew there was so much to learn? 

    One of the families I work with gave me a poem about how we live our life around plan A.  This is plan B.  We just have to change things for a while! 

    I am so grateful to everyone on these forums.  I have learned so much from them.  There is so much you don't get from the Drs and nurses and the ladies here are a wonderful source of support. 

    Ana

  • lago
    lago Member Posts: 17,186
    edited March 2012

    goforhope that company is out of business if it's the French one. The implants were all recalled. Most of the problems with them were in France. Ask your PS what implants s/he plans to use. Typically here in the US they use Mentor and Allergen although there is one more company. These companies have been around for years and make safe implants. Your PS or BS should be able to explain all the issues with implants

    article

    BTW I've had my implants for almost a year now. They are doing just fine but there are other options for breast  reconstruction. I know I was too thin for some. I also didn't want more scars or more invasive procedures with longer surgeries.

    Let us know what your BS/PS/onc tells you if you feel comfortable. Good luck.

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited March 2012

    Did any of you feel pain from your cancer before surgery?  I read on some of Cool Breeze's posts that she said she felt a burning pain in hers.  Mine is more little sharp flashes of pain that come and go.  It isn't new either... but now that I've been diagnosed I'm aware of it.  It is in the area where the cancer is and I suspect hormones have something to do with it.  My periods are starting to come a little farther apart, and both sides are getting more tender.  I guess the end to it is definitely in sight.  I'd wanted to post something about the pain before, but I hate to scare anyone half to death who isn't diagnosed and doesn't actually have cancer.  We all know what that frightmare is like, too.

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