My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

Decisions, Decisions

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Oftentimes, when facing cancer treatment, you do not have too many choices.  You can choose to have a mastectomy or not.  Go through chemotherapy or not.  Get radiation or not.  These don’t really seem like choices.  At least, for me, they were not presented as such.  When speaking to a nurse about whether or not I would need radiation, he said, “Oh yeah, you’re getting radiation.”  And it was decided.  But recently, as I move into the final phase of my treatment, it seems like I have had to make a lot of decisions that can affect the rest of my life.

When I met with my plastic surgeon, Dr. Saadeh, after being diagnosed in August of 2014, he presented me with all of my reconstruction options.  When I say “all,” I mean two.  1) I could get an implant.  The pro of getting implants is that it is a simple, outpatient surgery with a short recovery time.  I’d be able to get back to normal life, including raising Oliver, in a few short weeks.  The cons of implants are that they need to be replaced about every 10 years or so, assuming that they don’t burst or deflate (REALLY?) before that.  That means several surgeries over my lifetime.  I could develop scar tissue around the implant which would make the breast hard.  Also, if I were to gain or lose weight, only one breast would show change while my reconstructed breast would remain the same.  2) Either DIEP or TRAM Flap surgery (I write both because I honestly can’t remember which one has been offered to me although I’m pretty sure it is the DIEP Flap).  A TRAM Flap reconstruction involves removing fat, tissue, vessels and muscle  from the lower belly area and moving it up to reconstruct the breast.  The DIEP Flap surgery is similar to the TRAM Flap except it is muscle sparing, meaning they take the tissue, fat and vessels but don’t use any muscle.  This can be done by a surgeon who specializes in micro-surgery.  The pros of this surgery is that the reconstructed breast is very similar in feel and look to the remaining breast.  If I gain or lose weight, it will show in both breasts since it is my own tissue.  While this is a more invasive surgery initially, I will have less surgeries for maintenance over time.  The cons of this surgery is that recovery is significantly longer than with getting implants (about 6 weeks total with 3-5 days in the hospital).  I will lose core strength.  I will not be able to lift Oliver for several months.  3) No reconstruction at all.  This was not an option given to me but it is an option and one I have strongly considered.

DIEP_Flap_Reconstruction_1_test

Reconstructed breast after DIEP Tram reconstruction. Photo from breastcancer.org

Implant

Reconstructed breasts with implants. Photo from breastcancer.org

My plastic surgeon suggested that, given my lifestyle and the fact that I have a young child, the best option for me would be to get implants.  This was a strong recommendation.  He said he would do a Tram surgery for me but he didn’t think it was the right time in my life to have that kind of invasive procedure.  At the time, I didn’t care.  I just wanted the cancer out of my body.  I didn’t care if I had a breast anymore.  I didn’t care if they took them both.  I just wanted to live.  I wanted to escape my life.

I remember being disappointed with both of my reconstruction options.  I thought I’d look through a book of celebrity breasts and, literally, choose the ones I liked.  “I’ll have one Salma Hayek, please!!!”  But that’s not how this works.  I could change my breast size (I don’t want to, mine are just fine, thanks!) but my breasts will never look “normal” again.  Surgery will not be a positive thing.  It’s like choosing a Congressman; you choose the lesser of  two evils and hope for the best.

Fast forward a year later.  I have had my mastectomy, six months of chemotherapy, a year of Herceptin, and 15 sessions of radiation.  My breast is rock solid hard due to scar tissue and damage from the radiation. I’m in constant discomfort.  I have also developed Axillary Web Syndrome in my arm down to my fingers and lymphedema.  I went to my appointment with Dr. Saadeh, convinced that I was going to get an implant.  All we had to do was iron out the details.  When and where.  But that is not what happened.

“So, what’s going on with that arm,” he asked?

“Ummm…I thought I was here to talk about my boobs,” I replied.

But that’s not what he was interested in.  It turns out, NYU is now starting to do lymph node transplants and he seemed very interested in steering me in that direction.  I had heard about lymph node transplants but was under the assumption that they were still in trials.  They are not in trials but the science is very new and doctors are just starting to do the surgery.  He was also now strongly suggesting that I do the DIEP Flap surgery over getting an implant.

“Why would I want to do that,” I asked?  “I have an abnormally huge child who likes to be picked up all the time.  Wouldn’t that be a problem?”

“Well,” he said, as he checked himself out in the mirror (something he did several times during our appointment), “it’s true that there would be a longer recovery and you could not lift your son for several weeks but I think this would be a good solution for you.  Studies are showing that when you reconstruct with your own tissue, it can increase blood flow to the affected arm, improving circulation and helping to improve symptom of lymphedema.  And I really think you should consider the lymph node transfer surgery.  I think you would be a good candidate.”

So now, in a matter of minutes, the surgery I thought I was going to get, the implant, is no longer being recommended for me.  I could do it but my surgeon thinks I will still be extremely uncomfortable physically.  I now have to wrap my head around the possibility of a completely different surgery; one that will be more violent, more invasive and take up more of my life.  And not only that, I was being presented with a whole other surgery that could help with my lymphedema but, it is completely new and just starting to be done at NYU for the first time.  I would be one of the first ones at NYU to get the surgery!

“I need to read articles.  What articles can I read about this?  And I need to get second or third opinions.  What doctors can I see?”

I think this shocked him a little bit but he answered my questions.  He told me about Dr. Babak Mehrara, who works at Memorial Sloan Kettering and is a pioneer in the field of breast reconstruction and lymphatics.  He told me to go see him (they are close friends) and to read his articles.  As soon as I got home I looked him up, read this article about lymphatic regeneration after tissue transfer, and called his office to schedule an appointment.

A few short weeks later, I was in Dr. Mehara’s office.  He spoke really fast and had a lot of confusing things to say.  But here is what I understood.  A lymph node transfer is not a cure.  I’ll say that again, it is not a cure.  When it is done, at it’s best, it prevents the lymphedema from getting worse.  This was a huge disappointment to me.  I thought going in, that this was recommended to me because it would fix me.  I learned that this was not the case.  I also asked him about the DIEP Flap surgery helping my lymphedema.  He said it has helped with some people but not a huge percentage.  And, again, it would not be a cure.

This is the first time that I had to face facts and acknowledge that my lymphedema is forever.  It’s never, ever going away and I will have to manage it for the rest of my life.  This information suddenly weighed on my chest.  I couldn’t breathe.  The disappointment was more than I could bear.  Despite this, he suggested that I get a test called a lymphoscintigraphy which would provide pictures of my lymphatic system.

In the last year, I have been through some incredibly unpleasant medical procedures. But this one really bothered me.  On the suck scale, from sucking boogers to sucking sweaty horse balls, well, you can guess where on the scale I might be referring to.  The procedure entailed 16 injections.  Eight in the webs of my fingers and eight in the webs of my toes.

Fun Carrie fact…I hate my feet being touched.  It freaks me out!  I hate getting pedicures for this reason but suck it up once or twice a year.  So to have eight needles injected in between my toes as two nurses hold and spread them was just about one of the worst things I could think of.

After they injected my hands, I had the pleasure of having a machine, which I will name, “Sloth” scan me as my arms were place over my head.  I think I had to stay in this position for 45 minutes.  Cue major cramping and muscle spasms.  But I could not move or we’d have to start again.

The same thing with my legs.  The machine slowly scanned me for about 45 minutes.  Could I listen to a podcast?  Surf the internet?  No!  Just me and my thoughts about needles being stuck in my fucking toes!!!

After about three hours of tests, the nurse came back.  “We need more.” MORE????!!!!????  Back in the machine I go for another hour as it proceeds to scan my WHOLE BODY!  Oh, Sloth, how I hate you!

After four hours of needles and scanning, I was free to go.

“When will I know the results,” I asked?

“Well, I can see the results.  But I can’t tell you,” said the nurse. “Your doctor will call you on Monday.”

Bitch.

One week later (seriously) after many phone calls, I got a call from Dr. Mehrara’s nurse confirming that I did in fact have lymphedema in my arm.  They now wanted to schedule me for another test called an ICG Lymphography.  More needles.  This would give them a more detailed image of my lymphatic system and could tell whether or not I would be a good candidate.

But I knew I wasn’t a good candidate.  You see, I’ve always had swelling in my right foot and the lymphscintigraphy confirmed that I have a slow uptake of fluid in my right leg which puts me at risk for lymphedema.

I consulted more doctors.  I talked to every doctor and nurse that I encountered.  They all agreed with my concerns that this procedure was too new and that it could be too risky for me.  Why transfer a set of lymph nodes from one part of my body to my arm when 1) it won’t cure my lymphedema and 2) could possibly cause lymphedema in another extremity.  This was the end of the line.

I met with Dr. Mehrara this Wednesday.  I was supposed to have the ICG test but told him I didn’t want it.  He agreed that this wasn’t the right procedure for me right now.  One decision down.

Now, for my reconstruction, it has been a rough choice.  I have been thinking about it every day since my meeting with my plastic surgeon in September and I think I’ve made the choice I need to make but it’s not the one I want.  I will be getting the DIEP Flap surgery.

I remember thinking when I was diagnosed with cancer over a year ago, that I couldn’t wait until I got my reconstruction.  In my mind, it was the event that would end my cancer journey (for lack of a better word).  It would close the chapter on this part of my life and I’d be able to move on.  But cancer doesn’t work like that.  It throws difficult decision after difficult decision at you.  It is constantly testing you.  “Are you still strong,” cancer asks?  “How much more can you take?”  I guess we will find out.

What surgery did you have?

What was recovery like?

Did surgery help your lymphedema?

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16 thoughts on “Decisions, Decisions

  1. Very informative.. This should be allowed on FB so others may learn …

  2. I had DIEP four years ago and am happy to chat if you want. It is a big surgery, for sure, but as you well know, you can endure things you never imagined pre-cancer. Email me at nancyKhicks@gmail.com if you’d like.

  3. Carrie, I am so sorry you have to make such difficult decisions. You will choose the best option for you and you will know it.

    I had the lumpectomy, which had relatively a quick recovery (a couple of week?). But the pain still persists today, depending on what kind of bra I am using or how I am sleeping. The poor breast is beat up because I also had a re-excision to get clear margins.

    Survivorship is full of decisions and that’s what makes it so challenging for me as well. It can’t ever be an easy answer; you have to consider all obstacles, re-examine the options, and wish for the best. Nope, we’re never really done with cancer.

    Wishing you the best possible outcome with the decisions you make. Please keep us posted.

  4. Sorry you are going through all this. I had DIEP, both breasts, several years ago. Not an easy decision but out weighed a TRAM because I wanted to retain core strength. It was a lot to go through- but I was running again 4 weeks post surgery.

    • That’s amazing that you were running 4 weeks post-op! That gives me hope. I have visions of being bed-ridden for several weeks. I hope to be up and walking around after the first week. Cross your fingers!

      • I was in bed the first week watching tv but definitely walking around the neighborhood at 2 weeks. And I was 48 years old, being younger is an advantage. What they did not tell me is that I had to wear a corset thing for 3 months and had to have a revision surgery 2 months later to fix things up and a nipple construction surgery several months later.

      • My surgeon said that I didn’t need any special garments at all. I wonder what the difference is and why you needed to wear a corset and I won’t need anything…

      • Maybe because I had a bilateral mastectomy? I had a scar from hip to hip and a reconstructed navel, surgery was 16 hours long, first few days in ICU that I do not remember. I still have no feeling in my chest area. I was maybe the 100th patient in Boston so relatively new at the time–2005.

      • I’m sure there’s a reason. I’m having a unilateral reconstruction. I’ve already had my mastectomy. He said the surgery will be 4-6 hours long. I’m sure that’s part of the difference. But the incision will also be all the way across my belly. Maybe there’s a new kind of stitching since 2005?

  5. I had the lats flap reconstruction 11 years ago and continue to suffer from chronic and debilitating back pain. Touching the core muscle like this, even just a flap, has disrupted the full system of muscles used for standing and sitting. Please look into having an exam by a physiatrist or someone who can assess the impact.

    • thank you for the info. I have a physiatrist that I work with already and I have a post-surgical appointment. We are not touching any of the muscles in my surgery so hopefully I’ll get my core strength back fast. I’m sorry that you are still experiencing chronic pain from surgery. It must be awful and frustrating.
      Be well and happy holidays!

  6. Hang in there! I opted for no reconstruction due to the fact of already putting my body through hell to survive the cancer. I feel lopsided at times, but I know it was the best decision for me! 7 years post mastectomy.

    • I’m SOOOOOOOOO tempted to do no reconstruction just to avoid all of the shit I’m about to endure. But, in the long run, I’m not sure I’d be happy. I hope I’m making the right choice. It’s so hard to know. Thank you for reading and commenting!

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