Forum Discussion

Fleabee's avatar
Fleabee
Member
11 years ago

OLLIE the ostrich

Hi All, this is my first post and I kick myself I didn't join up earlier.  I am so grateful for all of the knowledge and open, honest experiences shared on here.  

 

Diagnosed July 2014, DCIS 5cm lump, HER2+ ER PR Positive

Treatment: Chemo first (last one Dec 14) and then surgery in 2 weeks time. Hormone treatment next 5 years

 

I was so focused on getting through chemo and getting rid of the cancer, I ignored everything else. My mind was set on a mastectomy from the start so there was no way it could come back (oh how ignorance is bliss)

 

I had tunnell vision even though the oncologist did tell me the risk of it coming back was the same regardless of which option I chose.

 

I also thought my boob would be deformed anyway as at the very least a 5cm chunk would be taken out - well we cannot even feel my lump anymore

 

I also wanted to avoid radiation but a mastectomy doesn't guarantee that either.

 

Anyhow, I feel like an ostrich which has just pulled its head out of the sand and will be looking into the whole lumpectomy vs mastectomy and re-construction process with more vigour

 

At the end of the day I may have no choice but a mastectomy and I will be okay with that

I look forward to reading your posts and hearing about your journey

 

 

 

8 Replies

  • Fleabee's avatar
    Fleabee
    Member
    11 years ago

    you have not confused me at all.  Thank you so much for sharing.  I didn't think about how your natural breast feels after radiation, scarring etc.   I am 45, you were 47 so you understand completely my dilemma. My mother in law had a mastectomy a couple of years ago (in her late 60's) and for her, she is not concerned with reconstruction at all and prefers not to go through any more surgery. I can relate to this as well.  thanks again xx

  • TonyaM's avatar
    TonyaM
    Member
    11 years ago
    Hindsight is a great thing isn't it.However,my belief is do your research then go with what feels right for you at the time and then have no regrets.I was only 47 at the time of my first diagnosis in 2003.My surgeon gave me the choice of lumpectomy or mastectomy but steered me towards lumpectomy. There was no discussion of recon and my odds of getting bc again in the affected breast was 8%.I was horrified at losing a breast at that age so opted for lumpectomy.I took my 8% chance but I was unlucky.I guess I got used to losing my breast bit by bit. It was never the same after radiation- very hard and uncomfortable but hey,it filled a bra.7 years later,I was more accepting of a mastectomy when bc came back.I had no choice anyway.I have since met so many women in my position that I would question that figure of 8% chance of recurrence.Because of radiation,I am limited with the type of recon I can have should I decide to go down that path later.Being lopsided does have it's drawbacks.I wear a prosthesis and can only wear higher necklines - my scar area is abit of a mess.So clothes shopping has it's challenges.I no longer do"naked'in bed-but that's just me.You know,it's a really hard decision to make and much of it depends on your age,your views and your pathology.I had no family history and my bc was not aggressive or in the lymph nodes so I had every reason to think it would be a'one off'- hence the lumpectomy.I probably should have had a mastectomy in hindsight but I don't have any regrets.Mind you,doing the crap journey twice was no picnic!! Hope I haven't confused you too much. Tonya xx
  • Fleabee's avatar
    Fleabee
    Member
    11 years ago

    thank-you so much Jessica, was it you who posted this link for someone else?  The Komen website is an amazing source of info.  I'm sure it was here I found these little pdf booklets on treatment and options from start to finish for each of the different stages of bc.  It was quite a long read but one that would have been so helpful at the start of my journey.  I got so many bits of paper and catalogues and booklets

     

    Really appreciate your posts and help 

    xxx

  • JessicaV's avatar
    JessicaV
    Member
    11 years ago

    Hi,

    You put it so well: we have all been there, trying frantically to learn all we need to know to make choices. And then realising we missed some vital stuff. I was deadset to get rid of the cancer, fast. I had not realised how valuable neoadjuvant treatment is for actually measurably getting rid of the cancer and seeing clearly if the treatment works or not and how well. But it is impossible to get enough info into our heads while our world is blowing up around us. You are actually doing incredibly well, and i am sure you will continue to handle it impressively and intelligently and wisely.

    I found the Susan Komen website has a helpful section on choosing between Lumpectomy and Mastectomy:

    http://ww5.komen.org/BreastCancer/DecidingBetweenMastectomyandLumpectomy.html

    and anotherSusan Komen page on the choice specifically for early invasive breast cancen

    http://ww5.komen.org/KomenPerspectives/Lumpectomy-versus-mastectomy-for-early-invasive-breast-cancer-%28February-2011%29.html

    And the big american breastcancer.org site also has some helpful stuff.

    http://www.breastcancer.org/treatment/surgery/mast_vs_lump?gclid=Cj0KEQiAiuOlBRCU-8D6idaPz_UBEiQAzTagNGclnNnKu5BaPAF6j10Mj68JxwCk-squKFzj41aTvG4aAs4P8P8HAQ

  • Fleabee's avatar
    Fleabee
    Member
    11 years ago

    great to hear you are fine now Tonya.

    oh yes, my poor surgeon is going to be rolling his eyeballs when he sees my list of questions.  And I totally agree that sometimes having no choice is not a bad thing.  

    I think I breezed through chemo, had every side effect  known, the only time I ever vomited was on my way home after having my port "installed"

    On the plus side - a wax free brazillian!  (note to universe - I would rather wax than chemo)

    I do have a question for you - do you regret not having the mastectomy when you were first diagnosed? 

  • Fleabee's avatar
    Fleabee
    Member
    11 years ago

    Hey, thanks so much Sue, thats fantastic you feel so good, love it!!!

     

  • Susan_Linda's avatar
    Susan_Linda
    Member
    11 years ago
    We are all ostriches sometimes. Perhaps it is our inbuilt way of surviving a stressful situation. Life after a double mastectomy for me is great. I feel free and so alive! Good luck on your journey. You will start to question everything you hear but hang in there. Sue
  • Susan_Linda's avatar
    Susan_Linda
    Member
    11 years ago
    We are all ostriches sometimes. Perhaps it is our inbuilt way of surviving a stressful situation. Life after a double mastectomy for me is great. I feel free and so alive! Good luck on your journey. You will start to question everything you hear but hang in there. Sue