Neoadjudvant Chemo no surgery needed

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precioustime
precioustime Member Posts: 233
edited June 2014 in Stage III Breast Cancer

I completed 6 rounds of TAC chemo on Oct. 30th, 2009.  My oncologist said that they are going to schedule a PET scan in a couple of weeks and depending on the results, there may not be need for surgery or radiation?  Question: Has anyone else had Neoadjuvant Chemo and not had to have surgery because of a Complete Clinical Response? Thanks.

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  • Toronto_012
    Toronto_012 Member Posts: 75
    edited November 2009

    Hi, I had neo-adjuvant chemo and was told that they always operate to take the site of the tumour out.

    Toronto

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  • Estepp
    Estepp Member Posts: 6,416
    edited November 2009

    I had that response.. FULL response to Chemo.. it was unbelievable news...

    If they do not do surgery... how do they know ANYTHING after Chemo... ?

    Rads might not be needed.. but  some type of surgery IS IS IS...

    PM me if you wanna chat about it.. ok?

    Laura

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  • lexislove
    lexislove Member Posts: 2,645
    edited November 2009

    Rads may not be needed...but surgery definatly. Some woman are able to have a lumpectomy after neoadjuvant chemo.

    Also...scans are not all that reliable.Just ask a few woman on here who have done the neo adjuvant route. The surgery is the time when the docs know for sure just how well the chemo worked.

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  • Gitane
    Gitane Member Posts: 1,885
    edited November 2009

    From my MRI after neoadjuvant chemo I may have had a pCR, but after the mastectomy the pathologist could see viable cancer still in the breast.  I'm not sure anything short of surgery can assure you of a pCR, even if the surgery is a lumpectomy of the former tumor site.  For this reason a clip is often placed in the tumor before neoadjuvant therapy, so the surgeon will know exactly the site of the tumor if it disappears.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited November 2009

    I have read of too many women who thought they had a complete response, only to find cancer still present after surgery. If it was me, I would still want surgery.

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  • DCMom
    DCMom Member Posts: 624
    edited November 2009

    DITTO-Throw everything you can at it now because this is the best time to stop it in its tracks.  Boobs are overrated when your talking about certainty of a complete response.  I would much rather say I didn't need to than oh my gosh I should have.

    Congratulations on a great chemo response!  At least you know it responded and you are WAY ahead in the game.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited November 2009

    Yep, the way I see it, it is a one shot deal. Do everything you can, have no regrets....

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  • NancyD
    NancyD Member Posts: 3,562
    edited November 2009

    Chemo may show a complete response via MRI, but it cannot see the microscopic cells that can remain and continue to grow back. Removal of the tumour site is the minimum you would need (lumpectomy), along with a pathological examination.  Quite often, the path report still shows a small amount of active tumour cells.

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  • mumito
    mumito Member Posts: 4,562
    edited November 2009

    I had a complete response to chemo but still had a mast.

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  • TammyLou
    TammyLou Member Posts: 740
    edited November 2009

    I sure would want a second opinion on that.

    There is a WAY big difference between clinical response and what is ACTUAL.  (Take it from the women who had all clean imaging...yet, still had cancer present when they were opened up.)

    Stage 3C for me...RADS (in 6 fields with 2 sets of boosts) followed pathologically complete response (NO cancer present after chemo determined by surgical excision).

    If I was you, chickie...I would want a well-known major cancer treatment center to confirm the integrity of that "plan"...unless you are 100 years old and/or have some kind of other major health problem (cardiac or diabetes) that may cause "issues" with tolerating rads.

    tl 

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2009

    A PET/CT will not show anything until there are something like a billion cells present or a centimeter.  I had another clean scan the other day.  But, although my onc. thinks I may have finally had a complete clinical response, he says there is no way to see micromets that are too small.  Either way, i'm celebrating the clean scan.  Not gonna borrow trouble.

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  • AsiaYM
    AsiaYM Member Posts: 2,216
    edited November 2009

    I would do more research to satisfy yourself. This is your body, you will live with the decision you make and hopefully, with no regret.

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  • JacquelineG
    JacquelineG Member Posts: 282
    edited November 2009

    Hi precioustime,

    Like you, I had a PET/CT after chemo which showed no more cancer in IM node (i had mastectomy and node dissection prior to chemo). I still had radiation in 6 fields and am convinced the benefits outweigh the risks (at least for me) being a stage 3! didn't want to take any chances. Let us know how your PET goes!

    Jackie

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  • LJ13-2
    LJ13-2 Member Posts: 235
    edited November 2009

    OMG. I would seriously consider a different doctor if he said that.

    It takes about a billion cancer cells aggregated to show up on a PET scan.

    The tumor bed must be removed.

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  • Gayleebug
    Gayleebug Member Posts: 166
    edited November 2009

    I too had a complete clinical response with fully negative mammo, MRI, and gamma, and was FIGHTING mad when my onco team insisted I have a mastectomy with full lymph node removal.  Why would I want to do that?, I thought.  I ended up having it done, however, and path came back clean, clean, clean, so there was NO cancer in me after chemo.  I followed it with the max rounds of rads.  I was still mad about the mast until my onc explained that I still had a 30-50 percent chance of recurrence (WHAT????) because of my stage (IIIa) and grade (2-3) of tumor.  Once I got this into my thick skull, I then opted for a prophy mast on my "good" side (during my bilateral DIEP reconstruction last month) and the path report for that breast was also fully clean.  (((I close my eyes and raise them to heaven in thanks.))  Until the docs figure out a way to be close to 100 percent sure that the cancer is gone, the standard of treatment is still to take the breast and examine it microscopically ... although in many cases it turns out to be a perfectly clean healthy breast. 

    Now because of the choices I've made so far, supposedly, there is only a miniscule chance I can get a recurrence of BC in the breast areas because I have no breast tissue left ... my new "breasts" have been made from my abdominal tissue.  I could get it elsewhere, however, if it decides to pop up, say, in the lungs or bones.  I just don't want to even go there....

    All my best to you, precioustime, as you decide Kiss what is best for you

    Gayle

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  • precioustime
    precioustime Member Posts: 233
    edited November 2009

    Thank you Ladies!  Maybe the reason the Oncologist was not sure if surgery or radiation was going to be needed -- was because they had biopsied 1 mediastinal lymph node (in chest) and it was positive.  Her thought was why take the breast if there is cancer in inoperable lymph node.  This was reason for neoadjudvant Chemo.  I believe she wants to see the results from PET scan and mammogram before going to Oncologist/Surgeon board to discuss my case?  I definitely agree with your comments on throwing everything at it!  At this point I am waiting to see the Oncologist 10/30/09 and hopefully will have a game plan by then.  The waiting is always the hardest part...

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  • TammyLou
    TammyLou Member Posts: 740
    edited November 2009

    I'm glad you explained about the positive mediastinal node.

    In that case, what your doctor is suggesting makes logical sense to me.  Please let us know what the cancer board says.

    tl

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  • Colette37
    Colette37 Member Posts: 387
    edited November 2009

    I had 6 treatments of chemo before bilateral masectomies done.  The big thing about that is I did not have any IDC left, but I still had a 10 cm DCIS tumor!  They did an MRI right before the surgery and there was nothing which showed up, and I did not feel any lump left after the chemo had started working.  Chemo kills fast growing cells, but does not kill the slow growing DCIS.

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  • mumito
    mumito Member Posts: 4,562
    edited November 2009

    I had a complete response to chemo.Then had a mast to be sure.Recently had a second mast. Pathology is now clear. Do all that you can to be safe.

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  • phoenixsmom
    phoenixsmom Member Posts: 58
    edited December 2009

    Hi Precious.  I had several large tumors, stage 3 and also had a complete response to chemo.  I asked for another MRI and was denied, as I too thought I could possibly escape further treatment.  I am soooo glad I had my mastectomy.  The path report showed no residual cancer, however, they found several small spots of ductal carcinoma in situ in the removed tissue.  I guess from what I've now learned, the chemo can't get rid of that.  So that cancer would still be there today.  The cancer cells throw out markers or seeds as my ND calls them, and could cause more cancer to pop up in the future.  You don't want to let your cancer throw out any more seeds that could end up growing anywhere else in your body.  

    From my experience so far, the surgery's not been too bad at all.  I'm 31 and I have to say things have come around much better than I had thought.  My best wishes for you. 

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  • precioustime
    precioustime Member Posts: 233
    edited December 2009
    Thanks everyone for your advice. Smile  I met with Oncologist yesterday and she said that I had a "near clinical response" to Chemotherapy.  They did not find anymore Cancer on the PET scan except for a lymph node in my chest that shrank 1/4 of the size it was!!!  This is all Good news and I Thank God for it.  I will meet with the Surgeon on Thursday to discuss Surgery and then will have Radiation.  I am going full speed ahead and doing whatever I can.  I am at this point considering a Bilateral Mastectomy without Reconstruction. 
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  • lexislove
    lexislove Member Posts: 2,645
    edited December 2009
    Sounds like you made the right decision. No looking back...just forward! Smile
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  • precioustime
    precioustime Member Posts: 233
    edited December 2009
    Sugery is scheduled for December 14th.  Bilateral Mastectomy w/o Reconstruction.  Please keep me in your prayers Smile  And Lexislove-- I am looking forward and not back!  Thanks to all those strong women that have went through and have reached out with words of encouragement and strength!  God Bless
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  • Bugs
    Bugs Member Posts: 1,719
    edited December 2009

    You can do this!  You will be in my thoughts and prayers.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited December 2009

    Precious I believe you are making a wise decision.  Hit it hard now with all you can as others have said.  The scans are just not capable of picking up smaller tumors or circulating cells.  My cousin just completed neoadjuvant chemo for her Stage 2 Grade 3 Triple Neg BC. She also had a "complete pathological response" to the chemo but still followed up with lumpectomy and will now be starting radiation. 

    I just celebrated the 4 year anniversary last Saturday of my bilateral mastectomy w/o reconstruction, followed by chemo and rads for a Stage 3C ILC with 23 positive nodes and so far remain NED. I have no regrets at all for doing everything possible to kill this cancer.

    The surgery is very doable and not having reconstruction was one of the best decisions I made in this whole process.  Be sure to check out the BreastFree website for helpful information for both pre and post operative issues.  Tons of good information about your choices of going flat, wearing prosthesis, clothing choices and general adaptation to an unreconstructed chest.

    Best wishes and prayers are coming your way!  You can do this!

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  • precioustime
    precioustime Member Posts: 233
    edited December 2009

    Awesome that you are 4 years NED LindaLou!  These stories give so many women hope that there is life beyond diagnosis and treatment! 

    I am starting to count down the days before surgery December 14th.  I sure hope that I will be up and around before Christmas-- I have a 3 year old and would really like to make his Christmas bright!  He was such an inspiration to me while I was going thru 18 weeks of Chemo and I really don't want him to go through anymore of Mommy being sick and too tired to play with himFrown

    Question for those ladies who have had bilateral mastectomy with nodes removed on one side-- Do you think I will be able to take care of my 3 year old alone a week after surgery?

    Thanks again for all your prayers and words of encouragementSmile 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2009

    I had Surgery last year on December 11th, and was totally fine by Christmas. Drains out and everything. Even cooked a Turkey (my husband did all the lifting!)

    I had a 3 year old and a 5 year old at the time (now 4 and nearly 6) and I only had help for a week. We did a lot of TV watching, but i was fine. 

    Good luck with the surgery - it really isn't as bad as you might think. 

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  • Christine2000
    Christine2000 Member Posts: 176
    edited December 2009

    I also had a bilateral mast w/out recon--22 nodes removed. I was up and about VERY quickly--within 3 days. But RIGHT--no lifting!

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  • precioustime
    precioustime Member Posts: 233
    edited December 2009
    Thanks KerryMac and SherriG -- you both seem to be very strong ladies!  I too hope that I will be up and around in about 1 week Smile  My surgery is in 2 days and I find myself getting nervous .......  Reading posts about the dreaded drains doesn't help Frown  In 4 weeks after surgery I'm to have radiation therapy to the lymph node in my chest....  I am soooo ready to get this treatment over with so I can move on with my life.  If it wasn't for God I would be a basket case.  My Faith in Him as kept me going thus far and I am thankful!
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  • S_Quinn
    S_Quinn Member Posts: 2
    edited December 2009

    I had 8 weeks of Neoadj AC and 12 wks of Tax. They place a clip in the breast to mark before surgery which they remove after chemo even if you have a path complete response - they take out all the surrounding tissue. I had a complete pathalogical response to the primary tumor, but I had 14 pos axillary lymph nodes and 8 pos mammary nodes. I don't think you're going to get away with no surgery. If you had no pos nodes before surgery you may get away witout axillary disection.

    Good luck

    Quinn

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