Saturday, January 16, 2016

My First Lump Experience, After Mastectomy

Let me start with this, EVERY lump and bump will worry me for the rest of my life.  It's not over just because I had surgery.  If a lump forms, I'm going to worry.  That being said, I'm also going to let you know that this lump I found turned out to be a suspected undulation of the implant, so you can continue reading just for the education and my experience.

Thursday

At this point, I'm seven months post surgery, and overall doing great.  When you have a mastectomy with implant reconstruction, you're bound to still have numb areas of the breast, like I do.  When I get an itch that I need to scratch, its sometimes hard to find and satisfy with a scratch, causing a bit of a comical scene.  Two nights ago (Thursday night), while lying in bed, one of these itching scenarios happened, which led me to finding my first ever lump in my breast.

You're probably thinking, "What?  You can't get lumps after having a mastectomy!"

Well, yes you can, actually.  
As many people may know, the risk of recurrent breast cancer after any type of mastectomy is not zero. A woman who has had a mastectomy can still get breast cancer, although there is a very low risk of recurrence. This is because it is not humanly possible for a surgeon to remove every microscopic cell of breast tissue. The goal, however, of mastectomy is to remove any gross visible breast tissue seen by the surgeon. In contrast, at the nipple all that is left behind is skin. (http://medicine.stonybrookmedicine.edu/surgery/blog/faqs-about-nipple-sparing-mastectomy-what-women-need-to-know)
There a couple types of lumps and/or hardness which can occur after a mastectomy with reconstruction, and I'm learning about all of them now, only because of the lump I discovered (See below for different types of lumps).  When I found it, my first reaction, within those first couple seconds was, no, not possible.  Nothing was visible from the outside; no rippling, no redness and nothing sore.  I ignored it for maybe an hour, but then came back to it, making sure I was feeling what I thought I was feeling.  I rubbed it, tried to roll it between fingers...anything I could do to try and decipher whether it was muscle, a true lump or my imagination.

By User:Starr4ever:) (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons


I proceeded to feel all around both breasts.  Smooth as butter...can't feel a single lump, ridge, fiber...nothing but smoothness.  I went back to this area.  Yep, definitely different.  At that point, I got online and messaged my plastic surgeon (thank goodness for social media).  Now, most people would say, you felt a lump, go get it checked no matter what...why are you taking time to get online?  Well, I was in half panic and half denial, he's my breast surgeon and I was alone in my house.  I needed to reach out, get outside of my own head, and seek advice.  He said it could be fat necrosis or scar tissue, but he knows I won't have peace of mind until I have an ultrasound.

I then messaged my GYN who just completed my Oophorectomy on What's App with what I had found and my surgeon's suggestion.  Again, you're asking why her?  Well, it's night time, offices are closed, and she's online.  I needed to talk to someone here, in Singapore, to get some sort of ball rolling.  She agreed with my surgeon and asked if she should schedule an appointment with someone for me.  I don't know why, but I started to doubt myself at this point, and didn't immediately respond to her.  I became embarrassed.  Am I overreacting?  Is this all because I'm terrified it actually could be something, so I naturally want to avoid it?  Am I making a mountain out of a mole hill? ZERO pun intended.   I'll tell you this ladies, no one can tell you how to react or when to be scared when you are high risk and have gone through these surgeries to try and save your life.  

I finally wrote back and told her I'd wait until my husband got home, and have him see if he could feel what I had felt.  I know, why wait and why did I need him to feel too?  For me, it was like my pregnancy test.  I didn't believe the first one, and proceeded to take three more before believing I was pregnant.  I had to wait until the next morning for my husband due to his late nights this week.  

Friday

When my husband felt, he definitely felt the lump too.  He couldn't tell if it was round or not, or if it was muscle or not.  But he could feel something.  After he left for work, I screamed the F word a few times and I broke down, sobbing like a baby for a few minutes.  It doesn't help that I'm sleep deprived and my hormones are out of whack.  I messaged a few close friends, just for support, because it really can be lonely when you live overseas, and I tried gathering some strength from their positivity.  After pulling it together, I messaged my GYN, as well as my physician/oncologist, Dr. Tucker, and let them know that I was ready to move forward in putting my mind at rest.  Because really, how cruel can the world be, after all I've been through?  It had to be nothing.

I couldn't seem to get an appointment anywhere last minute.  I tried my follow up breast doctor, fully booked throughout January.  Dr. Tucker's office tried another doctor, fully booked.  While this was all happening, I noticed my belly button incision from my oophorectomy was red, tender and slightly oozing.  Two weeks post surgery I wouldn't expect this to happen.  So, lets add one more thing onto the plate and message my GYN again.  Bam, I had an appointment scheduled for first thing Saturday morning, 8:30am (today).  I cried a lot today.  It was a mixture of releasing a lot of tension from this year, disbelief that I am actually going through these movements right now and just overall exhaustion.

Saturday

This morning I was on my way to my GYN.  Upon examination of my belly button after the oophorectomy, I was given some ointment to use twice a day to help it heal.  We then got down to business regarding the breast lump.  She felt the left breast first, getting a baseline of what my new implant breasts feel like.  She didn't want me to tell her where the lump was on the right breast, to see if she could discover it on her own.  Sure enough she did...1:00 position, 1/2 in in size.  She got me into an 11:00am slot with her breast surgeon, Dr. Woon, and I was off, yet again, to another appointment.

Upon arrival at the next hospital, it was lucky that the elevator lobby was so crowded that it began sending me into panic from too many people, because I was able to walk the nine flights of stairs which helped me focus, calm down and exhaust myself a bit.  By the time I made it into the doctor's waiting room, I was too tired to panic or worry anymore.  Dr. Woon called me in, went over my history of BRCA1, surgeries and other health history, then had me get on the examination table.  She felt it right away, and she too wondered what it was.  Out came the ultrasound, but she couldn't find a thing.  Everything was smooth and clear.  No cysts.  She seemed a bit perplexed, so poked a little deeper until she saw some undulations in the implant where I had felt the lump.  She then attributed what I'm going through to just that, undulations.  Now, I'm no doctor, so of course I'm going to relay this information back to my surgeon, just so he can help me understand all this, but he's sleeping right now, so an answer will have to wait. :)  

The one thing that rings in my ears from today, is my GYN telling me, "you're allowed to overreact, because its not overreacting in your case.  We want you to be vigilant, we want you checking and we want to be preventive."  So, while some people will never know what its like to feel a lump, thank goodness, others need to know its ok to panic and its ok to seek attention asap.  

By Burningrome (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

Types of lumps:


Fat necrosis: (I did not have flap surgery, but necrosis can still happen with leftover areas)
Occasionally there can be a phenomenon called “fat necrosis” in the newly reconstructed breast mound. That is when the fat from the abdominal flap does not receive enough blood supply in its new position and forms a scar as a result. It will manifest as a hard lump under the breast skin which can feel alarming upon detection. Your plastic surgeon can usually differentiate between fat necrosis and cancer recurrence on clinical examination. If there is any doubt, then you will undergo a needle biopsy or a MRI to arrive at a diagnosis. (http://www.bra-day.com/breast-reconstruction/)
 Capsular Contracture: (remember my Victoria Secret exercises I do?)
If you had implant reconstruction and you feel hardness in the breast area, it may be the result of capsular contracture. Capsular contracture occurs when a hard tissue capsule forms around the implant. It can be small and barely noticeable, or it can become very painful and distort the shape of the breast. Let your doctor know if you see or feel any of these symptoms. (http://www.breastcancer.org/treatment/surgery/reconstruction/screening)
Scaring:

Plain and simple, it could be a bit of scaring from the overall surgery, since there was scraping and disruption all over. 

Calcification Deposits:

Hard lumps under the skin, around the implant.  They can be mistaken for cysts/tumors.

Cysts:

I can't find clear/medical evidenced based information on this right now, but I read a few (ok, a lot) of forums where women find lumps and bumps all the time after mastectomy and reconstruction surgeries, most ending up to be benign cysts.  Yes, it's totally plausible to continue getting these, even after you've had a mastectomy.  Many of the women spoke of these being skin cysts, found in the remaining tissue after surgery.

* Update...nothing was wrong, it was just part of the implant. Everything is ok, but there's no such thing as overreaction when it comes to lumps with a family history.

13 comments:

  1. I can certainly appreciate the panic you experienced. So glad that you were able to get some reassurance in a timely manner.

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  2. So glad you were ok. Reading that I was sat on the edge of my seat waiting for the ending.
    Last Wednesday I had a double mastectomy with implant reconstruction. I'm off to the hospital tomorrow and will hopefully get these uncomfortable drains out. I've just discovered what I would call a lump around the edge of one of my implants. Obviously I'm in hysterics! It's not circular I don't think more of a hard raised lump. My breast are both feeling tingly around the incision site.
    Does this sound normal?

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    Replies
    1. Hi Amy -

      Did you ever get an answer? My wife just had similar surgery and found a lump today. She's nervous and I'm 600 miles away with our kids who are still in school. Any advice or answers would be great for me to help comfort a worried wife!

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    2. Hi Amy -

      Did you ever get an answer? My wife just had similar surgery and found a lump today. She's nervous and I'm 600 miles away with our kids who are still in school. Any advice or answers would be great for me to help comfort a worried wife!

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    3. Hello! Yes, I replied below. Everything was fine. They assumed it was just the ridge of the implant or some calification after looking with ultrasound. I hope your wife is ok.

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    4. Amy, did everything turn out ok?

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  3. Hello, sadly, I have fallen off the blogging horse, and I left things up in the air. I'm sorry to do that to my readers. I have promised myself that I will get back into it and continue my story. I am ok. I think you'll be fine, and if anything, you're in very early healing and there's a whole lot of healing going on in there causing a lot of different feelings. Hugs.

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  4. Hello, sadly, I have fallen off the blogging horse, and I left things up in the air. I'm sorry to do that to my readers. I have promised myself that I will get back into it and continue my story. I am ok. I think you'll be fine, and if anything, you're in very early healing and there's a whole lot of healing going on in there causing a lot of different feelings. Hugs.

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  5. Hello! I am excited that I found this blog today. I was diagnosed with stage 2 estrogen positive lobular and ductal carcinoma on both breasts. I underwent bilateral mastectomy and a right side lymph node dissection with 21 nodes removed and one positive node. Based on Oncotype scoring with the highest tumor scored 12, chemo and radiation were not recommended and started on Arimedex right away. I opted out reconstruction surgery afraid of the complications. I ended up having the worst experience of anyone I've spoken to at my surviver's meeting. I had drains for a month then seroma drained four times on each side after that. Then, I developed a stitch absces and took two rounds of antibiotics. I have phantom nerve pain and thightness on both sides for which I'm taking a large doses of Gabapentin. I didn't want to be on this medication which makes me drowsy and forgetful therefore I resorted on having neve block on my chest recommended by the pain management team that follows me. During the nerve block placement my right lung was nicked which sent me to the emergency room with a pneumothorax which resolved with a chest tube placement. The chest tube being on the lymph node dissection site, irritated the whole area and ended up with lymphedema on the same (right) side. I continue to go to physical therapy once a week and have complimentary message therapy at the breast surgeon': office. Four days ago, during one of these therapy sessions, I discovered a hard lymph on the same right side adjuscent to the incision line for which I had an ultrasound and a biopsy done the next day. My whole chest is irritated and is itchy at the same time. I'm going to see the surgeon in two days to go over results and discuss treatment plans. I'm praying and crossing my fingers this is benign.
    I am not happy with the outcome of my treatment. I certainly was made to feel that I was somehow at fault about everything that happened to me. Is there anyone out there that had similar experiences? Is this normal for me to have all these pain and discomfort and all the mentioned issues?
    I appreciate your response.

    ReplyDelete
    Replies
    1. Hello! I am so sorry that I did not reply sooner. As a teacher, we have been on summer holiday and I have not been keeping up with my blog. I hope everything turned out OK. What did the lump turn out to be?

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  6. Hello! I am excited that I found this blog today. I was diagnosed with stage 2 estrogen positive lobular and ductal carcinoma on both breasts. I underwent bilateral mastectomy and a right side lymph node dissection with 21 nodes removed and one positive node. Based on Oncotype scoring with the highest tumor scored 12, chemo and radiation were not recommended and started on Arimedex right away. I opted out reconstruction surgery afraid of the complications. I ended up having the worst experience of anyone I've spoken to at my surviver's meeting. I had drains for a month then seroma drained four times on each side after that. Then, I developed a stitch absces and took two rounds of antibiotics. I have phantom nerve pain and thightness on both sides for which I'm taking a large doses of Gabapentin. I didn't want to be on this medication which makes me drowsy and forgetful therefore I resorted on having neve block on my chest recommended by the pain management team that follows me. During the nerve block placement my right lung was nicked which sent me to the emergency room with a pneumothorax which resolved with a chest tube placement. The chest tube being on the lymph node dissection site, irritated the whole area and ended up with lymphedema on the same (right) side. I continue to go to physical therapy once a week and have complimentary message therapy at the breast surgeon': office. Four days ago, during one of these therapy sessions, I discovered a hard lymph on the same right side adjuscent to the incision line for which I had an ultrasound and a biopsy done the next day. My whole chest is irritated and is itchy at the same time. I'm going to see the surgeon in two days to go over results and discuss treatment plans. I'm praying and crossing my fingers this is benign.
    I am not happy with the outcome of my treatment. I certainly was made to feel that I was somehow at fault about everything that happened to me. Is there anyone out there that had similar experiences? Is this normal for me to have all these pain and discomfort and all the mentioned issues?
    I appreciate your response.

    ReplyDelete
  7. It's good that you did go to the doctor to put your mind at ease. I had a mastectomy after my 2nd round of BC and since then I was diagnosed with BC 2 more times. It's scary but you have to be your own physician and check yourself all the time. Being scared is part of our lives but it shouldn't take over our lives either. Keep checking yourself and then go back and check again. I'm so thankful that I did/do....Hugs to all.

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    Replies
    1. Thank you for your comment. Yes, it's always good to check things out. I started to live by the philosophy of, you can never have too many questions. It's our own health and we are our own advocates.

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