Not quite the news I was hoping for, but could be worse

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kber
kber Member Posts: 394
edited June 2019 in Surgery - Before, During, and After

I had my first meeting with my BS today in six months, following 5 months of neoadjuvant chemo.  I started with a tumor at 6cm.  My MO told me he could no longer feel it in a clinical exam, so I was hoping that maybe I was in the small group that achieved a path Complete Response.  But no, probably not.  My BS said he can feel something  "suspicious" and that a mastectomy (vs a lumpectomy) is definitely still on the table.  This is from a surgeon who is a huge advocate of breast conserving surgery.

Now I know I have a bunch of tests to get through to help define our plan, but it looks like my fantasy of pCR is just that.   Oh well.  We started the chemo journey with the hope of making a lumpectomy a possibility and that possibility is still on the table.  This whole "journey" (hate that overused word) has been a matter of putting one foot in front of the other, good days and bad.  The journey continues.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2019

    kber I am sorry but what's the next step? What kind of imaging? Try to stay positive--lumpectomy still on the table is good!!

    (BTW--at the survivors retreat I attended last month one woman said she hates the word "journey." "That's for fun things! Like hikes and travel and vacations and adventure!")

    Hang in there honey.

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  • kber
    kber Member Posts: 394
    edited May 2019

    Hi Ingerp.  Thanks for responding.  I have a Mammogram, ultrasound and MRI all scheduled for early next week.  That will give us more insight into where we really stand and what next steps are.  I will then meet with my Surgeon again on Thursday to discuss the results and map out our plan.  The same day I'm meeting with 1 of 3 plastic surgeons he works with and then another PS the following Wednesday.  I knocked the third PS out of the running based on some informal feedback / reviews from folks I know who have used him.  

    I also have an apt with my MO this Thursday, but I think that's mostly a post chemo check in.  

    Got some research to do for now.  

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited May 2019

    If this is a journey, I'm suing the travel agent!!

    Wishing you the best. hugs...

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  • kber
    kber Member Posts: 394
    edited May 2019

    MountianMia - thanks for the laugh!  You're right - this is NOT what I signed up for and I'd like to speak to the manager!

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2019

    Deep breaths until next week, kber. Try not to get ahead of yourself.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    Kber-- the MRI will tell you more, but not all. Only pathology can give the final word. Per my pre-LX imaging, I still had a BFN (big fucking node) that came up... nothing "live" in MRI .... and that node turned out to be all scar tissue, dead cancer. It had not shrunk down to size; it was like a stretched out balloon. Everyone was cautious about that node (a la your BS 'suspicious' comment).

    Anyway: the only way to know definitively is go in surgically, and send it to the lab.

    You've spent enough time on these boards to know that there can be cancer even with nothing showing up on imaging... the reverse is also true. They do not want to give anyone false hope, even with perfect imaging, in case of there bing tiny mets nobody can see. It just isn't over till the pathologist sings.

    Still I think you are smart to be mentally prepared, in case. I had that attitude as well. I knew my next stop would be Xeloda, so I suspect that is true for you as well. I do not know if you had any genomic tumor testing but there can be other actionable targets depending on genes. Lots of clinical trials too... plenty of treatment options, in case of a problem. As well as rads coming along. Maybe brachytherapy? But Hopefully, none of that will need to happen.

    Breathe deep and realize that you cancer had responded very very well. 6cm is a large starting place to be down to unpalpable!! I will cross my fingers you just have regular scar tissue that hasn't had time to get broken down yet.

    You have lots of info to gather before anything is certain! Wishing you the best!!!



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  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 127
    edited May 2019

    kber,

    Will keep you in my thoughts for next week’s appointments. Sending lots and lots of positive energy your way!

    Hugs

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  • kber
    kber Member Posts: 394
    edited May 2019

    Hi Santabarbarian.  I had not considered the possibility of dead cancer cells.  I wonder if that's more likely when you start with a largish tumor.

    I've talked to my MO about Xeloda and he's mentioned an immunotherapy clinical trial (probably not a fit) and a vaccine clinical trial that's phase 3 and targeted at TNBC.  I think it's run out of the University of Washington?  

    As you say, still lots of paths to explore.  Certainly not throwing in the towel any time soon!

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  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited May 2019

    kber, I want to second Santabarbarian's suggestion that it could be dead cancer or a tumor bed. I could always feel something in there, to the moment I went into surgery--it never "melted away" like I would hear others say. But all they found in pathology was a tumor bed and the clip they put there at my biopsy. I am so distrustful of imaging at this point! Six weeks before my surgery, I had an US and MRI the same week, two days apart. US showed the tumor to be 8mm and the MRI showed it to be 1.5 cm. So which was correct? Probably neither! I wouldn't want to get your hopes up only to be dashed, but I'd keep hoping! We are all hoping with you.

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  • kber
    kber Member Posts: 394
    edited May 2019

    thanks Beesy. I will stay cautiously optimistic. Question - what is a tumor bed

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2019

    Kber you don’t have one <yet>. It’s the scar tissue from the lumpectomy. It’s hard and tends to stay hard (and palpable) unless you work hard to soften it up.

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  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited May 2019

    I was quoting the pathology report and understood by connotation, but I had to look up this medical textbook definition: The vascular and stromal tissue that surrounds a cancerous tumor and provides it with oxygen, growth factors, and nutrients.

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  • kber
    kber Member Posts: 394
    edited May 2019

    thanks for the additional info

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  • Pinky24
    Pinky24 Member Posts: 28
    edited May 2019

    kber, hang in there. I’m in a similar situation; however, I was certain from the beginning that I wanted a BMX. My tumor started out at 9 cm and was pretty much the same size after 12 rounds of Taxol. My MO and I both cannot feel anything there anymore, but I’m not putting too much stock in that since I have lobular, which is hard to detect any which way. I’ll find out on Friday what the scans say. But I agree with the comments above that the only real way to know what you’re dealing with is surgery.

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  • kber
    kber Member Posts: 394
    edited May 2019

    good luck, Pinky! Keep us posted

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  • kber
    kber Member Posts: 394
    edited June 2019

    Quick update. I opted in the end for a BMX. I had some frenetic and other high risk factors pushing me in that direction, plus, if I’m 100% honest, perhaps some PTSD from chemo and a strong feeling I just didn’t want to go through that twice.

    I’m a week and a few days out of surgery and still quite tender. I still have drains in. But I’m at peace with my decision.

    In the end, I did achieve pCR. I’ve gotten bad news so often this year that I’m not used to getting good news, but it’s sinking in slowly. Chemo sucked but it worked.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2019

    kber--congratulations on having the decision (and surgery!) behind you. All good thoughts for a gentle but speedy recovery.

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    kber, congratulations on achieving pCR! That's great news

    Hope you lose the drains soon and the healing goes well.

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  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited June 2019

    Kber! I'd forgotten we'd had this interchange when I wrote you yesterday! Achieving a pCR seems even more miraculous when you have large tumors as we did. Given your stats, I don't think you'll regret the BMX--it is more surgery, though, so you need to give yourself time. In time, the PTSD parts will fade away and you will know you've done all you could, as we talked about yesterday. Celebrating with you!

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  • Yndorian
    Yndorian Member Posts: 263
    edited June 2019

    Hi kber! So you got PCR! I'm so happy for you! You were very brave to choice the BMX, congrats! I wish you a full recovery and ONLY good news since now. HUGS

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited June 2019

    Big thumbs up!

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  • VLH
    VLH Member Posts: 1,258
    edited June 2019

    Kber, the pCR news is fabulous! I hope that your recovery goes smoothly and that you're pleased with your plastic surgery results.

    Lyn

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