A lumpectomy gone askew: I had IORT... - My Breast Cancer ...

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A lumpectomy gone askew

huali profile image

I had IORT July 2018 for a 1.5 cm ductal carcinoma. My doc said "oops, I missed a little cancer you better have adjutant radiation as well." I complied. In June of 2020 my surgery site became infected and I developed and still have a seroma/hematoma. I received lymphatic physical therapy and now wound care as the surgery site is now an open wound . Since it is closely monitored ultrasound and biopsy diagnosed a 7mm cancer near this site. (the one the doc missed originally?) (the biopsy reported a 5 mm specimen on slide, why didn't he take out the whole 7mm???) Anyway, I am at a loss as to how to proceed and looking for like cases and ideas. All suggestions appreciated.

6 Replies

Would it be worth contacting Macmillan helpline for guidance. I had a friend who had to go through 3 lots of surgery before she was clear but the surgeries were directly after each other when biopsies were tested . I hope you can get get some help, best wishes x

You should have it re-excized, surgically. Get a second opinion for a surgeon. You know your body, follow what your heart says....jb

Hello Huali ! (sounds Hawaiian and I used to live in Hawaii !)

Sounds like your journey was similar to mine. Pardon my sense of humor and also frustration. I'm 57, ER/PR positive, Her2- who now has MBC. Son of a gun. Here's my story if it helps.

I was diagnosed in 2019 with ductal carcinoma on my "right girl". Stage 2 - no big deal. I had a lumpectomy in March and they also removed 4 lymph nodes under my armpit. Well darn it, one of those showed "external nodal extension" which in my uneducated medical opinion translates to "one of those lymph nodes could have farted into my blood stream". Lovely.

So I blindly went through 4 months of chemo (8 total sessions) that ended in July of 2019, a full lymph node removal in August followed by 2 months of radiation that ended in Nov 2019. I thought my right girl was going to fall off due to the "boob fry". So I celebrated Christmas in 2019 thinking "I am GOOD TO GO !" Praise God !!! Cancer free !!!

Well...... in July of 2020, I started seeing what looked like a seroma (candidly it looked like a mini volcano) developing PRECISELY at the lumpectomy scar. I went in to see my onc and breast surgeon and they put me on antibiotics thinking it was just an internal infection. Wouldn't you know it, in August, the volcano burst and was WIDE OPEN. The size of a dime. I requested an immediate late night appointment with my breast surgeon and (let's just say I took charge and said "Something is wrong in Rome" sweetheart". She took a biopsy. Bamn. The cancer was back and now I have an open tumor. To say I was "upset" is an understatement. I came up with more four letter words that would make "sh*t" look like a compliment.

They did a Petscan in Nov 2020 and wouldn't you know it. MBC. It spread back to my right girl and into the Pleural lining outside my lung. In the meantime, I have an open friggen tumor. They put me on Ibrance/Faslodex in November. Scans show a reduction but the tumor was there. They didn't want to remove it as it's a good "visual aid" on how I'm taking to the medication AND to remove it means I have to get off my drugs . So 6 of one or half a dozen of the other so to speak. Frankly, I just want to lop the boob off.

However, I finally (6 months after getting diagnosed with MBC) went in to see a Cyberknife clinic. They do extremely targeted radiation - similar to Lazik eye surgery. They nailed this sucker. I'm pleased because the wound while now the size of a quarter is starting to heal up. That's the goal. I'll know more when I follow up with them Friday. Tomorrow I have a Petscan and I'm looking forward to seeing if the Cyberknife treatment "nuked" my open wound and tumor. So we shall see.

So perhaps a consideration is Cyberknife. I am reluctant to remove the tumor via surgery as that is how the whole process got messed up to begin with. Jiggled up the cells and then OOOPS missed some. It really doesn't matter at this point as I'm MBC thanks to my idiot oncologists. However, if this doesn't close up, I'm rolling the dice and having the entire boob removed. I'm also on Careoncology.com. Read Jane McLelland's book "How to Starve Cancer".

Blessings and feel free to reach out anytime ! Sending prayers your way girlfriend ! I live in Arizona for location reference.

Julia

Julia, I know your situation is far from funny but your words have me doing some giggling. I would probably be rofl if you weren't speaking of such a terrible situation. I'm so sorry you've had to deal with all this. Stay strong.

Sounds like you're in quite a mess. Maybe look into different doctors. When I heard the word cancer, I told them take them both off. I do hope you get some solutions soon. Best wishes to you.

There’s an old “joke” that says Who are the two people you never want to hear say “oops”—your hair dresser and your doctor. This is very true.

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