Has anyone not had a mastcetomy with Ivasive Lobular?

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  • Annie51
    Annie51 Member Posts: 22
    edited September 2009

    Hi My issue is that if I do not have a mastectomy then i add on an extra 9% to recurrence which could take it to 15 /20% so to get me into single figures I have to do it. I am doing chemo 1st , then surgery later I still do not want surgery but feel i have too

  • nash
    nash Member Posts: 2,600
    edited September 2009

    Annie, it's true that there is a 8-9% chance of local recurrence with lumpectomy/rads, but the distant recurrence rate (which is what ultimately kills patients) is the same for lump/rads as for mastectomy. So don't add the 9% on to the other numbers you were given for overall survival--the two statistics aren't related.

    I'm not trying to question your surgical decision--I just want to make sure the info you were given by the docs is clear to you.

  • KathyAlex1960
    KathyAlex1960 Member Posts: 38
    edited September 2009

    I had a clear mammo in Feb 2008.  In November 2008 I felt a hardening on my left breast.  December mammo showed a lump.  MRI was CLEAR and NEGATIVE.  Biopsy was positive was ductal carcinoma.  I had a 4cm invasive lobular cancer tumor with positive nodes.  I don't want to go through what I have gone through and am still going through again.  Once I am done with the Avastin and feeling good, next year at this time I will have had my second mastectomy, and have a pair of 20 year old girls boobies!!!  I think it is a personal choice, and you have to feel comfortable with what your decision is.  My breasts served their purpose - I nursed my daughter for 15 months.  I don't need them!

  • nash
    nash Member Posts: 2,600
    edited September 2009

    Kathy, was your biopsy positive for IDC until the surgical path, when they decided it was ILC?

    I'm a little disconcerted by the stories of fasely negative MRIs. I may very well decide on bilat mast down the road, given the uncertainties with all of this, and would never talk someone out of that decision if that's right for them. I just get concerned when people think their surgical choice impacts their distant recurrence rate, b/c it doesn't.

  • KathyAlex1960
    KathyAlex1960 Member Posts: 38
    edited September 2009

    Hey Nash

    The biopsy showed mixed IDC and ILC, primarily IDC.  I was aware that either procedure resulted in about the same recurrence rate.  With the lumpectomy, definately radiation - about 36 treatments.  I didn't want to go through that.  I knew the chances of chemo were there, too.  When the final path came out, it was primarily ILC, with a little IDC.  My initial SLB was neg, but then after a few more tests were done, they found micrometatasis in one of them.  I then had the lymph nodes removed and 2 more were positive.  Size of the tumor and lymph node involvement caused me to have the chemo - 16 treatments.  I worry too much about it showing up in the other breast, and that is why I am going to have it removed next year.  ILC is just too sneaky, and especially with a negative MRI - not going to take any more chances!

  • nash
    nash Member Posts: 2,600
    edited September 2009

    Thanks for the clarification on the IDC/ILC, Kathy. Glad they took a second look at your nodes, too. Sounds like you got very good care. Good luck with the surgery--keep us posted on how you're doing.

  • azmnm
    azmnm Member Posts: 3
    edited September 2009

    Hi Annie.  I too had chemo first and then a bilateral mast.  I am glad i went with that course. My surgeon recommended it. She felt that my risk for infection following surgery would be less because by the time I had the surgery my white counts would be back to normal. My last trtment was 12-25-08 and my surgery was 2-05-09. The recovery was not nearly as painful as I expected. Just alot of discomfort. I only used pain meds for a day or so, then went to ibuprophen. the worst part was the drainage tubes.  I did this all because i wanted to reduce my chance for any recurrence as much as possible. hope this helps.

  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited September 2009

    I was given a choice for the mastering,if I choose this I would not need radiation treatments. Or I could go with breast conservation,which would be a lumpectomy w/removal of 3"sentinel lymph nodes" which I would had to have then follow up with radiation + hormone blockers. I choose the Breast Conservation. My surgery was Sept.3rd.2009m Ever thing went apparently well. I was happy to hear I had all negative nodes. I felt really good within a short time. I returned to my Doctor a week after surgery for my follow up and was very encouraged and my spirits we high.

    WELL, WHAT A WAMMY I RECEIVED!!!!!

    After careful dissection of the 3 nodes they in fact found another 3mm mass which was positive. So, I was rescheduled for another surgery Sept.17th for a complete "Axillary Dissection". This was so hard on me. I cried a lot. But, as difficult as it was I made it through. I'm a good bit more tender because of the incision is right under the arm. Very sensitive area!!! And the drain surely is no joy. I am dealing with it well though. And, even though my Doctor said they would prescribe + suggest I would need 6 weeks off of work, I returned to work 3 days later. I did OK. I have an office job and I'm pretty much alone, so dealing with the drain was not a problem either

    NOW, I RECIEVED MORE NEWS!!!!!!!!

    I had one more positive (6mm)node.

    If I hadn't had any bad nodes, I would had to only do radiation, but because of the new findings, even if was just the one positive node, this will mean of course I do need Chemo therapy also.

    I seen my hemotologist yesterday and he said more than likely I'll have the chemo first (about 3 weeks from now), I need to heal a bit more first. Then I'll have the radiation and I will still of course be doing the blockers for the hormones. Ny hemotoligist is meeting with the Radiology along with my surgeon before the exact type of meds are prescribed to me. I will have some choices, and I know at this point because my cancer is so very invasive, I will want just as an aggressive therapy. I'm too scared not to DO still feel blessed in that after my MRI, which showed another area of concern on my other breast, the right side I had a biopsy and Thank You Sweet Jesus it was negative I'm happy just to have one good working arm!!! Yet, because, I want to see my grandchildren grow. I want to be there when my granddaughter walks down that isle...................I WILL FIGHT!!!

    I will be this, though the journey will be long and hard/////////My road to recovery!

  • sueinfl
    sueinfl Member Posts: 258
    edited October 2009

    Thanks, Carolsue. I am in the exact same boat. ILC at 5cm, 95%ES, HER2neg and about to start CAT chemo in two weeks in the hope of shrinking it to lumpectomy size with no involved nodes. Wish me luck.

  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    sueimfl,

    Good Luck to you!!!!!! I am soooo happy for you, not to have NODE involement.

    May your Chemo go smoothe as can be expected.

    (((((WARM-HUGS))))) Brenda

  • hlya
    hlya Member Posts: 484
    edited October 2009

    LizziesNuNu:   Should your HER2 be negative instead of being positive? As far as what I know HER2 0 or 1+ should be considered as negative, if it has 2+ it means "equlvocal" and you need to test it again, and if 3+ which means it's positive.

    anybody correct me if I am wrong?

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