Phantom Nipple Sensations are WEIRD! denial and more….

Good morning –

As far as I can tell, phantom nipple sensations are something people DO NOT TALK ABOUT!  I keep having these sensations, sometimes itchy, sometimes painful, most times just sensations that are kind of hard to describe…  And it truly feels like I still have nipples.  I don’t.  I have something like 35ish cm of incision scar healing up… but no nipples.

So, naturally, I sat down to do some research, and there’s a dearth of personal descriptions of having this experience.  HOWEVER – there are a few publications…  What I’ve learned is that somewhere around 30% of post-mastectomy patients report feeling phantom nipple sensations – a significant fraction of those people report pain.  Of course, we know that people don’t always report truthfully… So, perhaps the numbers are actually higher than that.  Tough to say.

What I do know is that these sensations are bizarre!  I didn’t expect to have these sensations.  Also, I’m not used to having fabric just move over my skin – my upper back, my underarms, etc…

Sometimes, I feel like I’m underdressed without wearing a bra… but I have to say… no bra is FABULOUS! I have no regrets, and I feel fine being totally flat.  I’m glad this surgery ended up being in the winter because I have more time to get used to it while wearing more than one layer.  Also, my incision scar is not totally flat – hopefully, that will flatten out. The glue keeps it looking “fresh” – which is strange.  The glue is starting to peel off, and below is bright pink scar tissue.  I have to resist the urge to yank it all off….

In other news, I went to a 6 hour cancer retreat for parents and kids…  The very cool thing for the kids is that every kid there has a parent with a cancer diagnosis.  The very cool thing for the parents is that we all have kids.  It’s a pretty amazing organization that puts together these events.  Being with families that have a person with a cancer diagnosis is incredible.

http://www.mnangel.org/

There was very little religion discussed at the retreat (despite the name of the organization) – what religion came up was brought up by participants who draw major strength from their faith.  EVERYONE is welcome, and the people attending were quite diverse in terms of their family make-up and ethnicity and religious views. I highly recommend this organization to any family with a parent dealing with a cancer diagnosis.

It was tough, tho.  One of the biggest challenges now is facing the uncertainty of what will come next.  I’ve kind of been ignoring this phase – kind of living in denial that I’ll be living with uncertainty regarding what will happen next.  I do know that I have a high probability of no recurrence.  However, I had a very low probability of getting this disease in the first place.  So, what do I do with this uncertainty? That’s a reality that smacked me in the face yesterday.

Some of the people there were dealing with stage iv metastatic cancer.  One parent lost her co-parent only last month… and her own cancer diagnosis arrived about three months before her partner’s death – from cancer.  They have a six year old child, who is adorable and sweet.  Some of the people there were like me – the end of the treatment plan has arrived. We are no longer in active cancer treatment, but we will always be living with the reality of cancer.

So, how do I go from here?  How do we go from here as a family?  Good questions, right?  It’s not like I can just shut off the what if part of my brain, although I do attempt to shut it down.  But, I choose to live with optimism.  We choose to live with optimism.

Right now – the hypothesis is that I am cancer free.  All the data support that hypothesis….  I’m going to maintain my vegan diet… I’m going to regain as much fitness as possible…  I’m going to do more dishes and laundry and parenting… and I’m going to make sure that Cheryl knows how so very much I love her.

I hope everyone has a peaceful day.

Lee

PS – I have peach fuzz on my head… and my leg hair is totally growing back.  Why – oh why – couldn’t the head hair have come back more strongly than the leg hair?  I don’t really care about leg hair, but I sure would like to have a full head of hair again….  Oh – but as far as I can tell – my head hair has little to no pigment… but my leg hair does.  Weird.

 

 

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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....
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5 Responses to Phantom Nipple Sensations are WEIRD! denial and more….

  1. Susan Burroughs Soltis says:

    Wow!

  2. Lynne says:

    Hey Lee-since I “evaluate” scars (as damages in medical malpractice/injury claims), I can tell you that it takes at least 6 months for scars to heal. So they should get flatter, it will just feel like a long time. I’ve even seen scars that continued to flatten & become lighter (less visible) a year after the injury.

    Also wondering if part of the nipple sensations relate to nerves? If so, that’s kind of the same thing-6 months for a severed nerve to heal (reconnect where it’s been surgically severed). But maybe that is more like a missing limb thing, and not really a nerve thing?

    Probably not very helpful, but I’m guessing that you’ll see nice changes pretty soon.

  3. HM says:

    That phantom nipple stuff is absolutely related to nerves. Basically, your somatosensory areas are trying to process firing from the neurons that are no long connected to your nipples. They stopped after about 6 months for me. After that, I started to get pains from nerve regrowth. That mostly consisted of tingling or slight burning. Nerves take a long time to regenerate, so don’t be surprised if that takes a while.

    FWIW, I found not wearing a bra to be one of the harder things to adjust to. I felt naked all the time. I also found it difficult to adjust to the reality of being a cancer survivor instead of a cancer patient, but it happens. At some point, I realized that cancer just stopped being in the back of my head all of the time. That was a liberating realization.

    And finally (sorry for the epic comment), I’m completely understand trying to juggle the statistics of being a cancer survivor. Like you, I’m in academe (psych/neuro), so trusting statistics is part of my nature. Once you’ve been a one in a million case, though, it’s hard to go back to using stats to assess risk. I figure that nothing is ever certain and I can only make the best decision with the available information at the time. That helps self soothe a little.

  4. bonny says:

    What a beautiful post, Lee. So personal, so thoughtful. Thank you for sharing, as always.

  5. Nancy Casey says:

    I have to agree with Bonny. So well written. So many things said that many us don’t have the courage to write. Cheers!

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