Newbie with Questions about Surfing/Water

ShellSurfingShellSurfing Northern Rivers NSWMember Posts: 16
edited April 2018 in Newly diagnosed
Morning, I am newly diagnosed on Tuesday , saw the Surgeon on Thursday now waiting for the date of the op for my mastectomy.
After processing this all weekend, just wondering if anyone can help with these questions.
I am a keen SUP and surfer, I fear I will be unbalanced. Is this a thing? I fear having more operations and not being bale to get out on the water, I fear the reaction of chemo on my body. My surgeon only suggested removing the breast with the lumps in it, I also have suspect lymph nodes and he said he will know more once the operation is underway. He said I can remove the other which is also an option, as my other fear is getting in that side as well.
I am wondering if anyone can share there experience of surfing / supping and have you used a prosthesis, do you feel unbalanced if you don't? Did you get a reconstruction because of this?
Being out in the water has been my sanity in the last three years as I have been going through a separation and now a divorce, so continuing being on the water is high up there for my mental health.
Thanks for taking the time to read and reply 
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Comments

  • kmakmkmakm MelbourneMember Posts: 7,503
    edited April 2018
    @arpie @sister You may be able to help here?

    I'm not a water baby but sending you hugs. I reckon you'll be right though. Remember that young woman who had her arm bitten off by a shark? She kept surfing, and well. Our bodies are remarkably resilient and adaptable. Breathe, and hang in there. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 4,328
    Hi @ShellSurfing Welcome to the forum.  I was diagnosed at the beginning of December, had a partial before Christmas and then back for a mastectomy after New Year.  I love the beach and the water and was really angry about missing Summer as I couldn't get back in the water until the all-clear from the surgeon, which didn't come until a few weeks ago.  Although I don't get to do it as much as I like, I also love SUPing and kayaking.  I haven't had a chance to get on a SUP since surgery but I was kayaking over Easter - just gentle water because I'm still getting my strength back on the affected side and I had to work out how to get on the kayak the first time, which must have looked hilarious to anyone watching.  I don't know how large you are (I'm a C-cup) but I haven't noticed any problem with being unbalanced.  I do have both an everyday silicon prosthesis which I only wear if I have to (I find bras very uncomfortable now due to the nerve damage under the arm), and a silicon swimming prosthesis.  The biggest thing with mobility is making sure that you do the exercises and follow up as soon as possible if you have any cording issues.  I waited a bit too long for that but after only one laser therapy treatment, I noticed an immediate improvement.  The other benefit with a specialist physio or exercise physiologist is that you should get an exercise program to strengthen the side of the mastectomy.  Apparently, this is important for not developing lymphoedema, as is warming up.  I can well understand the sense of freedom and peace that being on the water can give you and you will get back out there as soon as you are healed.
     
    You will find out more about the type and extent of your cancer with the path report after surgery.  I can understand you thinking about taking the other breast off to avoid worrying about it but in my limited experience, you don't need to for balance - again, I'm speaking as someone who is not large-breasted.

    You will find lots of information and support on this site as well as a few laughs.
  • ShellSurfingShellSurfing Northern Rivers NSWMember Posts: 16
    Thanks so much for that Sister, great to hear from someone who likes the water, weird things you worry about.
    I am a D Cup, so not sure what the difference would be, but again thanks for the sharing of information.
    Exercise and physio will be high on my list so I can get back to my sanity
  • RomlaRomla AdelaideMember Posts: 1,913
    Hi @ShellSurfing if you have Radiotherapy day be aware you will need to careful with UV for some months after it ends as it seems to activate the radiated breast. We went to Cairns 4 weeks afterwards and I lived in a rashie plus I had to be  careful about how prolonged time in sun.
  • SisterSister Adelaide Hills, SAMember Posts: 4,328
    That's a point - not sure where you live @ShellSurfing but you may want to invest in a long-sleeved rashie if you don't already have one.  Target did have them for about $25, I think.  The last thing you want is to get your arm sunburnt on your affected side.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,836

    Being unbalanced can be a 'thing' particularly if you are big breasted. Like every other 'thing' with BC, it is not possible to figure out how badly, or not, you will be affected until you have leapt into the unknown. Same with chemo, radiotherapy, hormone treatment etc etbloodycetera. Completely impossible to predict where you will fall on the scale of ' Everybody is different.'

    I've had a double mastectomy and, though I had issues with my reconstructions, I was not that badly affected when it came to strength and range of movement. Yes, it took a while to get over it, but it is possible. I'd expect it would be the same with the missing boob, if you are reasonably determined you will be able to train your body to adjust.

    Just do what you can when you can. Worry about the rest later, though if you are a public patient  considering reconstruction it would be wise to plan to get started with that when you have your mastectomy. Depending where you live, the wait times for recon can be brutal if you don't do it at the same time.

  • jennyssjennyss Western NSWMember Posts: 570
    Dear @ShellSurfing, Great ideas and advice above. Sounds like you will  work out a  way to get back on your board on the beautiful ocean as soon as possible. I love the water too; but my balance is so bad, I can hardly stand on one leg let alone a surfboard. Best wishes from jennyss in Westen NSW 
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,315
    No reason why you can't surf once you are all healed up. You may not have the energy for it though so do everything you can to get help like I get my son now to pull my kayak to the water. Its a huge help for me and I have the energy to go paddling then. One boob off or two? I had only one off and my remaining one is small enough I can get away with no bra at all. In fact I haven't worn a bra since 2015.
  • SisterSister Adelaide Hills, SAMember Posts: 4,328
    Hi @ShellSurfing I saw your avatar come up on the side and wondered how you are going.  Have you had the op yet?
  • ShellSurfingShellSurfing Northern Rivers NSWMember Posts: 16
    Hi .@Sister, thank you for thinking of me, yes I have had the operation, the drains were the worst part. I think my surgeon was great, as I have amazing movement in my arms from the lymph node removal, I was expecting not to be able to lift my arms  at all. I am now waiting for healing of op and to start my chemo.
    The pathology and PET Scans weren't good, it has metastasized further into my lymph nodes and liver and is triple negative, so now I am on a journey of living every day the most amazing way I know how (can't wait for two more weeks and I can start surfing again-yippee), waiting for the Chemo to start (should be beginning of June) and pray/hope that this is all been a bad dream lol
    Hope all is well with you
  • SisterSister Adelaide Hills, SAMember Posts: 4,328
    It's so good when you can get back in the water! Chemo isn't fun but it is manageable.
  • brightspacebrightspace Member Posts: 302
    Hi Shell surfing ....all the best for treatments
     Your mind is often ahead of your body when you want to get back to the surf be gentle and take it easy 
    I have had single mastectomy am  38 D so foundthat i had to wear a swim sport prothesIs i found i only needed to use when in public and definitely when body boarding ....the foob is filled with beads . Sometimes lymphodema can effect the recovery of arm movement and chemo or rads will delay return to more active boarding.
    Cheers Bright
  • primekprimek Broken HillMember Posts: 5,125
    While I don't surf I swim. As soon as heaked I was back in water doing suggested exercises in tbe water and worked my way up till syrength returned. My physio suggested to wait 10 weeks for heavy working out ad I had a bilateral and reconstruction with a matrix sling. Chemo was the thing thst knocked me about and caused muscle msss loss and energy loss. But with persistence I'm doing pretty much all I did just not quite as often....yet. I bought a zip up swimsuit from speedo that you can place a prosthesis in. I never used a prosthesis but it's a good swimsuit. I also got a a hat through csncer council that is made of wimsuit material rather than rubber. Kinder to a bald head if you need chemo. 
  • ShellSurfingShellSurfing Northern Rivers NSWMember Posts: 16
    Thanks @primek I will look into that hat sounds like it could be useful
  • onemargieonemargie queenslandMember Posts: 1,240
    Hi there @ShellSurfing welcome to the forum. You’ve had some awesome advice so far. I’ll touch on the mastectomy side of things as the girls have the exercise sorted.  I had triple neg BC. Left boob stage 2a grade 3 (3cm tumor) aged 43 may 2016 (nearly 2 years cancer free) I had 8 lymph nodes removed  that were all clear all scans clear too. I could of just had a lumpectomy but chose to have a mastectomy so I could avoid radiation and my guts told me too. I had 8 rounds of chemo. Rads would mean daily trips to RBWH (brisbane) also which is a nightmare for me. I also took the other boob off as a prophylaxis even though I was told it wasn’t necessary.I just trusted my guts again on that one

    .Mastectomies are a very personal choice and everyone is different. I took both off as that’s what I wanted to do and no regrets from me. But that’s not necessarily what you should do at all but it is an option. I only had itty bitty titties so I’m ok with it. My advice to you would be to check your options about immediate recon. In hindsight I wish I’d done that for a few reasons. The wait times in qld are ridiculous. I’ve been waiting 2 years and just saw the surgeon the other week it will be at least another 12 months before the first surgery can happen and with you having bigger boobs this might me a good choice for you. Yo can join the breast recon group for advice too. Otherwise a prosthetic can be an option to weigh things up if you chose not to go down that path. Keep us posted how you go. Trust your gut listen to your body and you will know when it’s a good time to get back into the water too. Big hug. Margie xx
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