Unneeded bilateral mastectomy?!?!??? Don’t judge me!

Extra mastectomy may not extend life for some breast cancer patients
Reuters – ‎
NEW YORK (Reuters Health) – – For some women with early stage breast cancer, removing the healthy breast likely doesn’t afford much of a survival benefit, according to a new study.

There are several recent articles describing the choice to have a bilateral mastectomy as a poor one.

Here’s another one: The cost of peace of mind: A case of unneeded bilateral mastectomy
MIRANDA FIELDING, MD | CONDITIONS | JANUARY 10, 2014

Many of the articles cite the lack of improved disease-free survival and the increase in potential complications resulting from additional surgery. While these are valid points, the authors of such articles seem to fail to realize that a woman’s choice to have a bilateral mastectomy may have absolutely nothing to do with extending life. In fact, my choice to have the bilateral mastectomy had NOTHING to do with extending my life but rather improving my QUALITY of life.

When faced with a breast cancer diagnosis, what truly are the surgical options available?

Let’s talk about mastectomy with no reconstruction as a ROUTINE option. It should be offered, in my opinion, right along side DIEP flap, silicone implants, saline implants, etc…. Simply number X in a menu of options following the mastectomy, whether it be single or double.

Let me write a minute about my own treatment experience.

First – I had chemotherapy BEFORE surgery. This is a huge deal as it gave me more time to come to a decision about the surgical phase of treatment. I cannot imagine how it must feel for patients who receive their diagnosis just days before the surgical phase of their treatment happens. People are expected to become sufficiently educated within days about surgical options and then choose the best surgical option for their situation. Can you imagine? I cannot. I’m grateful that I had chemotherapy first, which lasted months but left me feeling confident that my surgical plan was the right one.

Second – no one pressured me to “save” my healthy breast nor towards reconstruction. They did ask me if I was sure… I said yes. They also asked me if I was sure once chemotherapy was complete. I said I was. I knew right off the bat that flat was going to be the best option for me. I asked that no extra skin be left behind – I wanted the flattest result possible.

Why did I want a bilateral mastectomy? First and foremost – I wanted symmetry. Second – I did not want extra surgical procedures. Reconstruction often requires multiple surgeries: the initial mastectomy and placement of tissue expanders (which can be delayed or immediate), the placement of the final implants… A minimum of two surgeries can get a person from the mastectomy to an implant-breast – assuming no complication. If the patient wants nipples, that is another surgery. If there are complications, the reconstruction can require additional surgeries and sometimes additional surgery to remove the implants or attached tissue all together. Reconstruction is a tough road with no guarantees, and I was not interested in traveling it. Add to that – reconstructed breasts do not last forever – many are faced with additional surgery later in life… Third – I knew I would have scanxiety (this is a real word in cancer-world). Every time I would report for mammograms or MRIs, I knew I would feel stressed out, no matter how unlikely a second primary breast cancer was. That wee little “what if” part of the brain is difficult to shut up. Now? I’m mammogram-free – for life! I require fewer screening procedures, which is a nice bonus, I must admit.

Why else might a person want a bilateral mastectomy? Well, I have to admit, the lack of bras in my life is quite wonderful. I also find running and jumping far more pleasurable – even the simple act of rolling over in bed is nicer. And, compared to my reconstructed counterparts, it seems I have a lot more sensation than they do. Also, if I want to have the appearance of breasts, I can use prostheses on demand (almost – I don’t actually own any).

Is it all rainbows and unicorns? No – there are some clothing options I feel are unavailable to me… I just look funny in certain things… I do get comments about being flat (the things people will actually allow to come out their heads never ceases to amaze me). And I do miss my nipples quite a lot.

Net win, however.

Given that crappy situation, and let me be clear – it was a crappy situation, I feel that bilateral mastectomy with no reconstruction was the best choice for me. I think this choice is a deeply personal one, and I cannot say what choice is right for another… but I can say – with confidence – that the menu of options should be more inclusive.

For some of us, the best surgical plan includes reconstructing breasts… For others, it means a single mastectomy. For others, it means lumpectomy plus rads in order to save as much of one’s breast(s) as possible. For yet others, it means bilateral mastectomy…. For me – it meant bilateral mastectomy with no reconstruction. I have no regrets regarding that decision.

Finally, articles and discussions about our choices should be more holistic and less judgmental. There’s more to a treatment plan than simply extending life. Quality of life matters too! Health care providers should be asking us – what is your best hope for surgical outcome? What is your worst fear for surgical outcome? And they should listen and work with us to develop the best treatment plan for extending our lives and preserving our quality of life!

Advertisements

About rleepenn

I'm a mom and a chemistry professor, and I love to ride bikes! On July 29th, 2011, I received the news that I have breast cancer. This is my blog....
This entry was posted in Uncategorized. Bookmark the permalink.

8 Responses to Unneeded bilateral mastectomy?!?!??? Don’t judge me!

  1. bonny says:

    I can’t imagine the need for any of us to make a judgment on the matter. That decision is yours; I embrace *your* choice.

  2. Deborah C says:

    Hi there. Really pleased to have found your blog. I live in the UK and am having treatment for breast cancer. Like you I’ve been having chemotherapy before surgery, which I agree has advantages in allowing for plenty of time for reflection before losing a breast. I’ve been pretty sure all along that I’d rather be flat in front than have one breast left, especially as I am quite large breasted. I am aware of recent research that confirms that bilateral surgery does not really confer any health benefit for women who do not have the BRAC gene and it is not taken up by women here in the UK at all routinely. Like you it is my preference because I think I’ll find it easier to lead an active, straightforward life without having to bother with lopsidedness, prostheses etc….

    So I met my breast surgeon today and told him I didn’t want reconstruction, but wanted both breasts removed. It might be the difference between a more consumer-led health system in the US and the public service ethos of the British NHS, but the starting point of the discussion was certainly not that my choice was going to get de facto respect. Treatment pathways here are determined by the results of trials, and there have not been any trials of outcomes for women who have had a “healthy” breast removed for quality of life reasons. The surgeon was very friendly and reasonably open minded but the underlying message was that in the end I’ll get the treatment that the medical staff decide is best for me. My role now is to convince them of the value of my views. I’m going to have to see a psychologist who’ll check I’m not bonkers (I didn’t mention that I am a clinical psychologist myself – seeing someone who is likely to be quite a lot younger and less experienced professionally than myself holds little fear!). The surgeon asked me if I’d be prepared to talk to his team, who apparently have been debating this issue, so I can represent “the patient’s view”.

    I think it would be great to hear from more women who have made decisions to have a double mastectomy for “lifestyle/quality of life” reasons. My feminism definitely informs this decision for me and also a lot of scepticism about the claims made for reconstruction. Really pleased to hear that you are so positive about your decision. Maybe I’ll print out your post and show it to my surgeon if you don’t mind.

    In sisterhood,

    Deborah

    • rleepenn says:

      Thank you for your comment! I feel very fortunate that I didn’t have to undergo extra evaluation in order to determine whether I could choose bilateral mastectomy without reconstruction. I continue to feel confident that I made the right choice for me. I continue to feel confident that reconstruction would have been a huge mistake. I hope that your medical care team can learn about how bilateral mastectomy without reconstruction can really be the right choice for many.

      Also – it seems that far more women opt out of reconstruction than our health care providers make it seem. That was super surprising to me! I commonly see discussions about reconstruction and how much pressure people feel regarding reconstruction.

      Check out this paper:

      Use of and Mortality After Bilateral Mastectomy
      Compared With Other Surgical Treatments for Breast Cancer in California, 1998-2011
      JAMA September 3, 2014 Volume 312, Number 9
      pages 902 – 914
      45% of women who had bilateral mastectomy received reconstructive surgery and 13.7% of women who had unilateral mastectomy received reconstructive surgery (according to the data presented in this paper).

      I hope you are able to have more control over this portion of the treatment plan. We have so little control when it comes to our cancer diagnoses…. It seems like the surgical treatment plan is one place where the patient should have as much control as safely possible.

      Good luck. I wish you the surgery you prefer and thoroughly boring pathology!

  3. Deborah C says:

    Thanks for your support!

    Deborah

  4. Sue says:

    Hi I’m in the UK too and everything you say in this post rings true with me. I did have surgery before chemo and had about a week to make the decision about what surgery I would have. A single mx was recommended, but I was completely sure that I needed a double and luckily for me (considering the roller coaster I was on during that week!) I made the right choice and a year later I am still totally happy with this. The only thing I read in your post with envy is the bit about asking for no extra skin to be left, to be as flat and smooth as possible. I wish I had asked for that. I wish I had KNOWN that I could ask for no spare skin to be left. The reason I didn’t is because I didn’t even know they wouldn’t. I didn’t consider that they would leave ugly bumps that stick out of my clothes and have to be carefully clothed. I don’t want reconstruction. Additional drawn out and risky surgical procedures that may not even work don’t sound like a great option for me. My attitude to cosmetic surgery is that it’s not for me (for many reasons). I have had the wake up call and the scary shit, now I just want to get on with my life, without more surgery to recover from. Being flat does not bother me as much as I thought I would, although I do miss my nipples. But recon with nipples doesn’t get me back to what I miss, it’s only a half measure that will not ever give me what I would like most (Ie life BC). Some people lose limbs and get on with their lives. I lost my breasts and it’s really not all bad. So why would I need this extra skin leaving in place. My point is that they never asked me that question.

    • rleepenn says:

      When it comes to mastectomy, I firmly believe that there should simply be a menu of options, with two flat options on the menu.
      1 – totally flat, with no spare skin.
      2 – flat but with spare skin for a possible later reconstruction.
      The additional menu items are simply the long list of options for reconstruction.

      Docs should LISTEN to us. I am amazed at how many people are talked into recon, and how many docs leave behind unwanted spare skin, regardless of what the patient requests.

      I’m super grateful for the flatness of my result.
      I’m so sorry you have this extra skin.
      I wonder if you could get a consult on a scar revision? Perhaps your scar revision would alleviate pain and discomfort in addition to giving you a result you would prefer?

      Good luck. And I totally agree about the nipples, although I have considered getting nipples tattooed onto my flat chest…. Instead, I’m slowly but surely tattooing my entire chest….

      Hugs.

      • Sue says:

        I agree those are the two options that should be offered and absolutely they should listen to us. I’m not so bothered about the bumps that I even want to go for more surgery, at the moment. Maybe i will change my mind at some point, I can’t see that I will ever go back for recon. And good luck with the tattoos! X

  5. rleepenn says:

    One thing I’ll mention is that the scar revision I had did not involve general anesthesia…. It was called monitored sedation or something similar to that. The recovery was super fast. I had two little bumps on either side of my sternum – the stuck out under my clothes – made me feel self conscious etc…. Surgeon had no problem fixing that right up. I was completely flat after that, and recovery time was very very short. So – in comparison to the mx, that surgery was easy breezy….

    And the tattoos are coming along swimmingly!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s