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Topic: Will I be able to go surfing after surgery?

Forum: Fitness and Getting Back in Shape — Conversations about exercise, diet, and getting back in shape after breast cancer diagnosis and treatment.

Posted on: Sep 19, 2010 10:07PM

surfette wrote:

I really hesitate even making this post. When people are trying to stay alive and I am posting such a shallow question. But since my diagnosis last week, my main thing has always been quality of life. I am an athlete and competitive surfer. Surfing is my life. If I can't do it any more I will have lost who I am. I need to know if after lumpectomy and radiation or mastectomy and reconstruction I wil be able to surf. It involves laying on your stomach and leaning on your breasts, so this is definitely a valid concern. Sorry again if this question is annoying. I am not any where near as concerned about cosmetic stuff, it's all about activity for me.

Dx 9/14/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 19, 2010 10:31PM ruthbru wrote:

It isn't a shallow question. It's important to you (and each of us) to know that we can still have a great quality of life once treatment is over; doing the things we love. And in the end, you should be able to surf and do whatever else you want to do too. It will take some time, and you will have to start slowly and work back into it, but there is no reason why you can't surf/compete, whatever (look at Lance Armstrong!!). If you have a choice, I'd do the lumpectomy; less invasive and a shorter recovery time. Best of Luck. Ruth

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Sep 19, 2010 11:42PM - edited Sep 19, 2010 11:43PM by dlb823

I can't imagine why you couldn't get back to competitive surfing.  As Ruth said, it will take some time, but you are probably in better shape than a lot of women who undergo treatment for bc, and that, combined with your desire to rebuild your strength and regain agility just as soon as possible, should give you an excellent prognosis. 

If you and your doctors decide on the mastectomy route, just be sure that you thoroughly educate yourself about the different reconstruction options.  I had Diep flap reconstruction, which is an all-natural option (no implants), and I recently read here about Fat Grafting Reconstruction, which would be something even newer.  Just be sure that you educate yourself on what's available, even if you have to travel to get the newest & latest.

Good luck, and please keep us posted on your progress!    Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Sep 20, 2010 12:12AM - edited Sep 20, 2010 12:12AM by Claire_in_Seattle

I did the Seattle-to-Portland Bicycle Classic w/i six weeks of finishing radiation (200 miles over 2 days) and did a kick butt Metric Century earlier today.

So plan on doing it.

The more active you stay during treatment, the sooner you will be back out there.  I cycled throughout chemo and radiation.

I would say that if you can have a lumpectomy, it will get you back there soon.  So ask if that is an option.  I did.

Not an unrealistic goal at all.  Good luck.

BTW - I didn't lean on my breasts, but I did swim well over an hour in the Atlantic Ocean a month ago while visiting friends.

Completed all treatment (AC +T, lumpectomy, radiation and 5 years of AIs - anastrazole). Now celebrating every single day for the wonderful life I have been granted. Dx 8/2009, IDC, Left, 2cm, Stage IIB, Grade 3, 1/21 nodes, ER+/PR-, HER2- (FISH)
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Sep 20, 2010 04:54AM jessamine wrote:

It's funny that I found this- I don't really surf, have only been out a few times, but I want to, and just today I was at the ocean thinking, does this mean I can't surf now? I had a bi-mx and implant reconstruction- in my situation I can lie on my boobs all I want, but strong use of the pecs is problematic- it's the paddling out I was worried about. So maybe keep that in mind if you consider implants at any point. If you're in pretty good shape (thin), you may run into the same problem I had, which is not having the option of getting reconstruction using your own tissue. So know that using your pecs isn't actually a danger to the reconstruction- it just affects it cosmetically somewhat, b/c the implant is under the muscle and can get flattened into the armpit some by pec strengthening. So it might be worth it to you. With a lumpectomy, or without reconstruction, there is absolutely no reason why you couldn't be back out in the water as soon as you heal up (which will take a ittle while, though).

BRCA2+ /bi-mx apr 27 2010 w TE, exchange to silicone implants 8/23/10. 6 mos of neo-adjuvant chemo- A/C and taxotere. no rads. ooph. 10/09. 35 years old at diagnosis Dx 8/28/2009, IDC, 3cm, Stage II, Grade 3, 0/8 nodes, ER+/PR+, HER2-
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Sep 20, 2010 08:10AM - edited Sep 20, 2010 08:12AM by Bren-2007

Morning Surfette,

I understand what you are asking ... and there are a number of things to consider.  (I used to surf, so I know what muscles you need and balance as well.)

I noticed on another post your tumor size was less than 1 cm. and that is small.  If you have DCIS rather than invasive (IDC) cancer, you should be able to have a lumpectomy ... and against medical advice, forego radiation altogether.  There will be a much shorter recovery time with a lumpectomy.  Radiation will extend the recovery time by a couple of months at least.

A mastectomy will require a long recovery time, as well as time for your muscles to heal.  Also, with a mastectomy, your balance on the board will be off until you acclimate to having no breasts. 

If you  consider reconstruction after a mastectomy, it will prolong your recovery time by up to a year.  A lat flap, which uses you back muscle, would probably not work for you, as you would never regain full strength in that area.  A DIEP flap, which uses abdominal muscles would probably have the same outcome, as you use your abs quite a bit in surfing.

I'm going to guess you're premenopausal, thus Tamoxifen being offered following treatment.

For you to be able to be treated and get back in the water ASAP surfing, a lumpectomy is the least invasive procedure.  Against medical advice, if I could do it over, I would only have the lumpectomy and skip radiation.  The SE's from radiation stayed with me for about 1 1/2 years (pain and numbness).

Another thing to consider with a mastectomy is that you might get lymphadema from having node removed.  Lymphadema would be very hard to manage while surfing.

I hope this helps ... as I know you are anxious to have treatment and get back in the water.  I realize in some areas surfing competition heats up in the coming months.

Best of luck to you ... please let us know how you are doing,

Bren

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Sep 20, 2010 08:16AM kriserts wrote:

it's not the same as surfing because of the issue re: laying down, but as far as being active, I continued to ride my bike through all treatments. I've raced for many years, so my rides consisted of 30-60 mile training rides. The steroids they gave me during chemo made me feel GREAT. I was really strong on the hills, I joked that now I know why so many cyclists dope. ;) The treatment did take it's toll on me, no doubt, and after chemo and radiation I was really tired for about a year. Even, truthfully, longer. But I continued to be active--as an athlete I think you're well equiped to soldier on through physical pain.

 I did develop some lymphedema, but have taken up swimming to help deal with it, because of the pressure of the water on the arm is supposed to help massage it, so it would seem that surfing would be beneficial.

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Sep 20, 2010 02:32PM Binney4 wrote:

Surfette, welcome!

Your question is about something that holds deep meaning for you, so how could that be shallow? Good question!

Every one of us who has been treated for breast cancer will be at risk for lymphedema for the rest of our lives. Because of how important surfing is to you, please insist on a referral from any member of your new medical team to a well-qualified lymphedema therapist for a pre-surgical consultation. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

S/he will take baseline arm measurements for future reference, give you guidance as you make treatment choices, and help you learn preventive steps you can take as you resume activity post-treatment (including learning a gentle prophylactic lymph massage). 

Lymphedema is for life, and it can have a huge impact on physical activity, as well as self-image. Better to get help early and head off any trouble.

kriserts, a gentle note to you that lymphedema is staged, just like breast cancer is. Without proper treatment it will progress -- and progression does not necessarily mean more swelling. Even if no further swelling is noticeable, lymphedema sets up an inflammatory response in the tissues that results eventually in fibrosis formation that further blocks lymph flow and can limit strength and range of motion. It also presents a very serious risk of systemic infection from injuries as "minor" as a paper cut, hang nail or insect bite. While our doctors too often dismiss lymphedema as "just a fat arm," it is in fact a serious medical condition that needs attention to ensure that we can maintain control of our lives. Please consider getting good help.

Be well!
Binney

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Sep 20, 2010 02:54PM NatsFan wrote:

Bin - I think I read your post wrongly about DIEP - It sounds like you said that DIEP will compromise ab muscles.  TRAMs use ab muscles and that does compromise those muscles.  However, a properly done DIEP uses NO muscle and your ab strength is not compromised.

But as to the main topic of the post, yes, Surfette, there's no reason why you should not be able to get back into surfing eventually.  Many of us were quite active prior to dx, and with a lot of hard work and persistence, we're just as active again.    

Mary Dx 12/31/2007, IDC, 2cm, Stage IIB, Grade 3, 1/15 nodes, ER+/PR+, HER2-
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Sep 20, 2010 03:05PM climbergirl wrote:

You will TOTALLY be able to surf my dear girl! I felt the same way about Rock climbing and I am stronger now than even before my Cancer gig. Smile

 I get so steamed when I read things like the above post....esp when the person who is asking the original Q is already in great shape and will most likely not have to deal with lymphadema EVER. Which is what I was told by my team@ MGH and Dana Farber and what I believe 4 years out. Below is why:

I had my surgeries with Dr Gadd(THE BEST) @ MGH (3 of them, the last one was a MX) I rock climbed post surgery and during Chemo. Also did Rads and kept rock climbing.  I have done yoga for the past 12 years and do it daily to keep things open.  Why? Because that is what MUST be done! A no brainier really....stagnant water/fluid either in the body or not causes issues, RIGHT? BTW,  I garden as well and have had many thorn sticks and many hang nails. Whatever! Get off the couch, LIVE!

 1. The studies show that EXCERCISE=preventative for Lymphadema. This is a fact and for YEARS they told women not to use the arm on the surgery side. RUBBISH!!!!!!!

 2. Studies have shown that taking more nodes has NO impact on long term outcome and that bacially we should not be doing full disection. For my SNB I only let them take 1 node and it was positive. 1 node pos= chemo. Keep your nodes is my advice and make sure you tell your surgeon how many YOU want to come out. That is your decision Mamma!

http://www.google.com/hostednews/canadianpress/article/ALeqM5hK3z0NWb7PBGc9fzEmlDDMQcE54g

 3. Here is another piece of info that for some reason is not actively discussed which that was told to me by my surgeon's post op nurse. The higher the skill of the breast surgeon the lower your chances of lymphadema. Sorry, not talked about but please get the best surgeon you can with your ops!I FIRMLY believe this!

Charlie Don't Surf, but you will!

xo

ClimberGirl

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Sep 20, 2010 03:35PM - edited Aug 20, 2013 05:46AM by lisa-e

Uh, I have to respond to this one, climbergirl.  Even people who are active can get lymphedema.  I am also a climber and I have lymphedema, post mastectomy.  I have learned how to manange it and can still climb.  However, I have had to cut down the on volume.  If I climb too much or too hard, my hands and chest start swelling.   I also worry when I get scrapes as I have had cellulitis three times in two years, once resulting in hospitalization for IV antibiotics.  I still do things that can lead to scrapes or cuts, but I am aware I am taking risks and don't take minor scrapes or cuts lightly. 

1) Anyone, active or not, can get lymphedema, after breast cancer related surgery.  

2) I am unaware of any studies that show expercise is a preventative for lymphedema.  There is one study that indicated that women with lymphedema could lift weights, in a very controlled manner, without causing flare ups.  This study also concluded that women who were in the weight lifting arm of the study had fewer le sypmtoms.

Please provide links to these  studies that show exercise is a preventative for lymphedema.  Lots of folks here would like to read them.

Breast cancer and surgery changes your body, surfette.  You may or may not be able to perform at the same level afterwards.  That said, I do agree it is likely, that you would be able to surf after surgery, you will probably have to ease back into it and see how your body reacts.  Also, if you decide to have a mastectomy you should talk to physical therapists about reconstruction and how it will effect your body.  You have a lot of decisions to make and should be fully informed before making them.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 20, 2010 03:39PM lisa-e wrote:

PS - Read Binney4's post.  I consider her this board's expert on lymphedma.

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 20, 2010 03:59PM DMS wrote:

Surftte- Please don't feel about your question, quality of life is very important.  I had a lumpectomy in July and within two weeks, I resumed my regular activities-- biking, running, lifting wights, playing golf, and Pilates (some poses require lying on your stomach) without much problem. I imagine it varies for everyone but you sound like you are in excellent shape and that should help.  I'm almost half thru with radiation and have kept up my activity. Good luck to you.
Diagnosis: 6/18/10 DCIS Stage 0:
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Sep 20, 2010 06:59PM ruthbru wrote:

I was back to a pretty normal exercise schedule during radiation, and did not have any lingering after-effects from it. You can always do land work until you can get back in the water. Being in good shape going in will really help you get through treatment, and bounce back more quickly afterwards too.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Sep 20, 2010 09:01PM Kathy044 wrote:

Further to the study mentioned above that came out today comparing overall survival results with SNB or ANLD. Not surprisingly the results of the two were equal for the node negative women.

The Lancet Oncology study abstract.

www.thelancet.com/journals/lan...

surfette I knew before my surgery that I had cancer in at least one node so needed axillary nodes removed. I think I feared getting lymphedema even more than any consequences of the cancer so I understand what you mean when you say its all about activity for you. It's been nearly a year now since my surgery, and I've been carefully and gradually increasing my exercise and level of activity and I must say that today I am much more fit than I was this time last year.

Dx 2009, ILC, Right, 1cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 10/28/2009 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 12/15/2009 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Radiation Therapy 5/1/2010 Whole-breast: Breast Hormonal Therapy 6/3/2010 Arimidex (anastrozole)
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Sep 20, 2010 10:35PM watergal wrote:

surfette

I would have answered you earlier, but this forum doesn't support posting from iPads (you can register, just not post - strange!)

Even though I'm not much of a surfer, I do understand and have data about your in-water activities. I used to be a NOAA diver and dove for AAUS, etc. also. I understand about something being your "life". It is not "shallow" it is your "life" and as important as many other situations. Now, my underwater photography is my passion, but it was tragically interrupted by this breast cancer.

I have a dive buddy who is a plastic surgeon and specializes in breasts, a very very good surgeon at that. Before my BMX he told me if I just got one MX (my R breast was healthy) he could do the "fat grafting" procedure, where they liposuction, I think, "donated (lol)" fat and form a very natural looking breast. He said not many surgeons in the US were doing this reconstruction, but he was one who was and he was very pleased with the results. He didn't suggest implants with all the diving I want to get back into. Even though DAN (Divers Alert Network) says women can dive with implants, he did not suggest it. He did not suggest the other reconstruction procedures for me either, knowing my activity level and all. Only problem he told me I'd have is "you don't have a lot of fat to donate" so he really said it would be a lot easier to reconstruct one breast vs two. I am in Florida, he is in the Orlando area, if you want his name PM me.

In my situation, originally we thought from biopsy, etc. my tumor was 1 cm, 1-1/2 cm at the most with "no evidence of lymphovascular invasion" and no swollen lymph nodes. As you can tell from my diagnosis that changed drastically after surgery. I had an ALND because the surgeon thought 4 nodes looked "suspicious" and he took all the nodes out. Turns out all 29 were positive - what a shocker! One never knows till after surgery, but at least none of my nodes were "extra-capsular" or clumped as they say, just a lot of positive ones with bits of cancer. I wonder if all the time I spent at depth, under pressure, helped push the cancer in my nodes? Who knows?

So as far as reconstruction, if you go that route, the above is excellent advice if you really want to keep your range-of-motion and activities. You might be OK with some other reconstruction procedure - I don't know. I opted out of any reconstruction after talking with my breast cancer surgeon for over 2 hours and going over my activities and how important it was for me to get back to them, etc. He is an amazing breast cancer surgeon, and yes, it does matter the skill of your surgeon and how much range-of-motion you will be left with afterwards (and how good you will look, my OT says my scars are "gorgeous"). My breast cancer surgeon helped develop the SNB technique and is on Wikipedia as one of the 3 authors of the original paper. He is amazing and said something that should comfort you. He has a database research project of 20,000 breast cancer patients he has operated on. He said "None of my swimmers have gotten lymphedema". And he tracks his patients well. That should give you some big hope.

I'm seeing an excellent lymphedema therapist/OT who authored a couple of articles on the StepUp Speakout site referenced in these forums. She has told me though that some of the reconstruction procedures seriously restrict your pectoral muscles amongst others, be careful about that. She was happy that with my particular activities, I opted out of reconstruction. Anyway I'm doing really well with the therapy, I did have some swelling after surgery, during chemo, when I rode my bike too much in the summer Florida heat. I wrapped my involved arm for a bit under her direction and got a cool-looking lymphedivas compression sleeve. I'm just about to be discharged, for now from therapy, and my very experienced therapist says I do not have lymphedema. I will always wear a compression sleeve during exercise though so I don't develop it. I even like swimming in one, personally. But, water is our friend and I believe you dive down a lot also, with surfing. That water pressure is your friend as is neoprene if you surf in cooler water - a neoprene wetsuit will act like a compression sleeve and will be great for you during surfing. DAN (Divers Alert Network at Duke University Med Ctr NC) says the divers they studied with lymphedema did much better, their lymphedema got markedly better, after a couple of days in a row of scuba diving.

So while I can't chime in about reconstruction experience as I did not go that route personally, the advice above should give you some hope, some alternatives, to get back to what you love! I did diving off my kayak in the springs around here and I fully intend to paddle a kayak again and dive, lug around my heavy underwater camera, etc. etc. I've been given the tools I need my my lymphedema therapist (I too suggest you see one) and I will always wear my sleeve while exercising, etc.

Oh, I was in the best shape of my life when I was diagnosed in April, but unfortunately I've had a real rough time with chemo - very sick on A/C and tons of pain with the Taxol. Some people's constitutions and systems are more sensitive than others and I've got a sensitive one. But, I will get through it and I encourage you to do all the recommended steps your doctors suggest. You want to live a long life and catch a LOT more waves. Get the best doctors you can, the best PT/OT and listen to their advice.

Good Luck! I've always wanted to photograph surfers in the surf zone! PM me is you have any ?s. I don't know where in the world you are? 

Diagnosis-4/22/10 BMX-5/10/10 ER/PR+ (both 100%) HER2- 5.2cm tumor 29/29+ nodes Grade 3 Stage 3c Path disagreement carcinoma type "Single-focal Invasive Carcinoma, type cannot be determined" Avid diver/UWphotographer I dream of my underwater friends!
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Sep 20, 2010 10:45PM lovetosail wrote:

Hey Surfette,

I'm a competitive sailor and was really worried about QOL issues when I was diagnosed.  In fact, I put off some initial treatment to compete in a regatta (after consultation with a dr).  There is a lot of upper body work in sailing, grinding on winches, pulling lines, etc.  I had neoadjuvant chemo, and didn't sail much then b/c it was winter and I didn't want to get too cold & wet and risk getting sick.  I had surgery in May, and I'm happy to say I resumed full activities about 2 months after my DIEP.  I think you'll probably do just great!  Being in good shape really helped me power through chemo & surgery.

Good luck!!

Dx 10/19/2009, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR-, HER2+
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Sep 20, 2010 10:49PM AnneW wrote:

I don't surf, but it wasn't long after my lumpectomy and rads that I was lying on my stomach and breasts in yoga class.

If you end up with a mastectomy and recon, do get yourself to a good physical therapist to help regain your strength the right way. Inactivity and surgeries make you weak as a kitten. And when you're an active person, you tend to try to jump back into exercise right where you left off. And that will lead to injury if you're not careful. Supervision is the way to go for a few weeks after a big surgery.

Best of luck. You can do it!!!

Anne

2002 IDC stage 1, grade 1, rads & AI Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 21, 2010 02:23PM NatsFan wrote:

climber - I also need to jump in and second what lisa-e and others have said.  There are many many of us who were in excellent shape and extremely active prior to dx who did everything right and still came up with lymphedema post-surgery. 

You should be very grateful that you've been lucky enough to do everything you have done without taking precautions and have avoided LE so far, but please realize that it is exactly that - luck. I also had a top notch breast surgical oncologist (Hopkins), but even the best surgeons still have patients who develop LE. It is not helpful to minimize the risk of LE or to tell those of us who have it basically it's our own fault for having poor surgeons and/or being "on the couch".  Being in great physical shape prior to dx is no guarantee whatsoever that we can avoid LE. 

Binney is a nationally recognized expert on the subject of LE.  You'd be wise to read her post and encourage others to heed her advice.  

Mary Dx 12/31/2007, IDC, 2cm, Stage IIB, Grade 3, 1/15 nodes, ER+/PR+, HER2-
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Sep 21, 2010 03:17PM - edited Aug 20, 2013 05:47AM by OneBadBoob

I am with you Mary.

Climbergirl is disseminating some pretty dangerous misinformation here!!

I hope she stops geting steamed and gets educated regarding lymphedema and its life time risk after having only one node removed.

And on reducing tumor load by removing any nodes that appear positive for cancer.

Jane - Dance as if no one is watching!! Dx 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Sep 21, 2010 09:20PM surfette wrote:

Thanks everyone for your help, boy this site is a wealth of information. Watergal, I am in Palm Beach County, Florida. Binney thank you for that info. I am wondering is this lymphedema therapy  likely to be covered by insurance? A quick review of the site does not indicate.

Dx 9/14/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 22, 2010 01:28PM Binney4 wrote:

Surfette, if you are diagnosed with lymphedema it is covered according to the PT provisions of your insurance. A pre-op visit without a diagnosis may or may not be covered, depending on your insurance policy, but it's worth checking out. Some women have gotten a run-around when they called their insurance company because the people answering the phones may never have heard of lymphedema, so explain it's a PT (or OT) visit prescribed by your doctor -- or call the therapist you want to see and ask, since they've likely dealt with your insurance before.

As you can guess from many of the responses here, lymphedema is a topic that has been swept under the rug by the medical community and the public alike, so educating ourselves (and our BC sisters) is our best protection. Sometimes it helps to understand where the confusion with lymphedema lies. Two years ago Dr. Stanley Rockson at Stanford did a survey of all U.S. medical schools to discover how much time was spent in a doctor's entire med school education learning about the lymph system. It turns out that the AVERAGE time spent is 15 minutes -- in the entire educational program. Which means, if you've read through this entire thread you've probably spent as much (or more) time learning about lymphedema as your doctor has. Nursing programs are basically the same.

So where lymphedema is concerned for us patients, knowledge is power!Cool

Be well,
Binney

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Sep 30, 2010 07:19PM SaveTheBoobiesNow wrote:

ABSOLUTELY!  You can do whatever you want based on how you feel!

I am a 2x Breast Cancer Survivor and was diagnonsed both times before the age of 40!

So, live life to the FULLEST and GO FOR IT!

By the way, since you are a competitive person, have you ever thought about running or walking at the Making Strides Against Breast Cancer Event in Downtown Orlando?

Check out the website for details on the event and for all of the info you need from the American Cancer Society regarding any help you may need.  They are here for people like you and me!

 www.OrlandoStrides.com

 Good luck and FEEL GREAT!!!

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Oct 5, 2010 09:26AM - edited Oct 5, 2010 09:30AM by carolyn77s

QUALITY OF LIFE IS EVERYTHING. I APPLAUD YOUR QUESTION.

I have one tip for compression sleeves, try out an armsleeve from lymphedemasleeveco.com they have a new design-- ones that go across your back in a shrug style to another sleeve, that way they stay up without the muffin top cinch at the top of your arm. this may be way more comfortable for sports, and for anything really.

Also, research this..I pulled from another post and its IMPORTANT TO NOT GET LYMPHEDEMA TO RESEARCH THE LATEST

It's not the standard of care everywhere, but when women are informed, they do better.
One thing that was recommended agan and again was to use the arm for normal activites, but do not stretch above shoulder height for the first 7-10 days--tender lymphatics are repairing in the air pit and overhead stretching can tear them. If you stretch, only lift the arm to shoulder height--you won't get a frozen shoulder, and you'll allow the axilla to heal better.

www.stepup-speakout.org/Findin...
www.lymphnet.org/lymphedemaFAQ... 

 enjoy your life x0x0x0x

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Jul 11, 2015 07:31AM Surfergirl55 wrote:

Hi Surfette-I had a double mastectomy in May 2014 and reconstruction in July 2014. I had one lymph node removed from each side and they were both negative so I did not have to do chemo or rads. I started Anastrazole in June 2014. First off, I have been surfing for most of my life. I am 60 now. I am a soul surfer and never competed, but most people say that I surf like a guy which is supposed to be a compliment. In other words, I was GOOD. I am a longboard surfer. My husband makes me custom surfboards. I heard allot of scare stories about having a double mastectomy, especially that you will never be able to do a pushup again. I have been working out with weights since I was 25 and was a natural Florida Bodybuilding champion at one time. Now I just work out to keep in shape and to stay strong. It took me awhile to get back to the gym and to get back into the water. I am much weaker in the upper body when it comes to doing bench press. I hurt my left shoulder after surgery trying to rehab myself for arm lifting and that shoulder took a YEAR to heal on its own(a good reason to go to rehab and not do it on your own...) 6 months after starting anastrazole I started getting all the stiff joints and pains and developed osteoporosis in my lower back which resulted in a very sore stiff lower back and hips every morning. It takes a bit to get warmed up and get moving. I also feel my leg strength has diminished as well so I have been working on that harder at the gym, especially hip flexors. Being on the anastrazole just makes me feel allot older than I am. I didn't feel this way before taking it. And I have read on this site that women who use the hormone therapy drugs feel the same way.

If you have a mastectomy you will def. be away from the water for awhile. But 14 months later, here I am, I can still surf but not at the same level at all, I can lie on my stomach to paddle(I never did lay on my chest as I arched my back and lifted my chest up off the board to paddle) but the problem I have is actually pushing myself up and getting my hips underneath myself to stand. I feel like I am 100 years old trying to do that. I used to be lightning fast at that-my husband would always comment to me how quick I was to get on my feet-which is really important for surfing. Now I feel like I am going in a painful slow motion which is very frustrating because by the time I get up my chance to really maneuver is gone. I am hoping that once I get off the anastrazole in 4 years that I will be able to surf closer to the way I used to. But then again I will be 64-allot older. Maybe my days of being a great surfer are gone-I don't know. Maybe I should try something else-like bodyboarding-something that doesn't demand such speed and strength. Paddling is no problem except for the fact that I am just out of shape for paddling, but the arm and shoulder strength is OK. I think if I did not take the anastrazole that I would be able to surf OK again. But is it worth stopping that for surfing and risk the cancer coming back? No. I am thinking my glory days have come and gone and that it is time to move on. I don't know how old you are, but at my age I was probably nearing the end of my stellar surfing days. But don't give up, give it a try and see how it works for you. Everyone is different and things affect each of us differently. I would love to hear back from you about how your surfing is coming along. I realize that your original post was from 5 years ago, but if you ever visit this site again, please give us an update.

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Jul 11, 2015 08:45AM surfette wrote:

Hi Surfergirl55!

I ended up just having a lumpectomy and radiation followed by tamoxifen. I was back in the water about three weeks after surgery and have had no problem with arm strength or getting up on the board. However, I did not realize how tamoxifen was going to change things for me. It began with a lot of knee issues and then just sore joints everywhere. I had two surgeries for torn meniscus. I used to run long distance, and was told I had level 4 osteoarthritis. This just came out of no where as I had never had joint problems. A family friend had the same experience with tamoxifen, the sudden onset of weak joints and osteoarthritis.

I am now getting to the end of the 5 years with tamoxifen and my onc says I can go off it at the end of the year. So what I am wondering now is will I see an an improvement if I quit tamoxifen or is the damage already done? She says after 5 years the added benefit is minimal so the decision is mine. I had a scare earlier this year when I thought I felt a lump, and when I went in, the nurse practitioner as asked if I was still considering discontinuing tamoxifen, as she says some people stay on it for the mental security. So I just don't know. I would hate to quit it and my knee issues continue. Also I don't pay for it because it's free with my insurance company. But I really want to get back to my old self and be able to run again. so I just don't know.

Where do you surf at? I'm in FL.

Dx 9/14/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 12, 2015 09:30AM Surfergirl55 wrote:

WOW!!!! Hi Surfette!!!! I honestly didn't think I would ever hear from you since you posted such a long time ago. This is awesome!!! I live in Melbourne in Brevard County and usually surf the Patrick AFB area, mostly at Oclub. As a matter of fact I surfed yesterday morning, the winds were offshore and the waves were an occasional thigh high nice clean breaker, and the water was warm and very clear which was a treat. I hadn't been surfing in about a month and a half even though the waves have been nice. After my last surf session over a month ago, I got very discouraged. I couldn't get my hips underneath me quick enough and felt weak doing the pop up and the push up. So I decided to forget surfing for awhile and do some conditioning at the gym. I worked hip flexors really hard, did allot of cardio(stair climber and elliptical) and bench press and push ups. Also added in hack squats and deep body squats for leg strength. OK then yesterday was the test. The surf conditions were nice for another attempt. On my first thigh high clean right, I got up much easier, felt a little wobbly but recovered quickly. That could have just been from not surfing in a long time. But I was very encouraged by the progress, plus the waves were nicer which helps too. I caught 3 more waves after that and came out of the water feeling pretty darn good about myself for a change. I am looking forward to going out again next time it is offshore, clean and thigh to waist high. I don't think I could handle going out anymore on over head days but clean small days are fun too!

I am assuming that you are pre-menopausal from what you said about taking tamoxifen. The drug therapy is great but the side effects SUCK. When I first started I didn't have any problems and my onc dr. was amazed and very pleased for me. But 6 months into it is when I started getting lower back, hip, knee, and thumb joint pains and plus the places where I did already have osteo arthritis seemed to feel worse. I had a bone scan to check for osteoporosis and it found that I had it pretty bad in my lower back. Can you believe that-someone who has been doing weight bearing exercises for the past 35 years, never smoked, eats super healthy, exercises and suddenly I get osteoporosis??? Obviously it is from the anastrazole. I get a Prolia injection every 6 months to help combat the bone loss. Had my first one in March 2015 I will see in Sept. how much it has helped or not.

Wow please tell me all about your surfing-where you surf(maybe I have seen you out in the water???) how long, where have you traveled to surf etc. I am very interested to hear from a surfing sista!

I hear you when you talk about staying on the drug for mental security. I have a friend who is finished with her treatment, she also had a lumpectomy, and has decided to stay on it the rest of her life. She is a golfer and apparently the joint issues aren't a problem when golfing. I KNOW I will get off of it in 4 years since I no longer have breasts. Sometimes I wonder if I even need to be on it now. But I will listen to the advise of my onc doctor but come June 2019 bye bye anastrazole. My dr. told me that the stiffness and joint discomfort goes away quickly after you stop using the hormone therapy. But as far as damage done to joints, we can only hope for the best. I guess in the longrun it is all better than having cancer again.

Take care my friend and get out in the water!!!!! And congrats for beating your cancer!!! hope to hear from you soon, hugs, Linda

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Jul 12, 2015 09:35AM Surfergirl55 wrote:

One thing I forgot to mention, I swear the drug therapy side effects are much worse than the surgery. That is ashame. If I didn't have to take the anastrazole I would feel MUCH BETTER athletically. Oh well.

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Jul 12, 2015 09:42AM Surfergirl55 wrote:

PS- one more side effect I forgot to mention is that shortly after I started the anastrazole I immediately began gaining weight, FAT, around my waist and hips. Never had that before and it wasn't from eating bad or not exercising. It just happened almost overnight it seems. I gained 10 pounds and no matter what I seem to do it won't budge. I hate that, I cannot see my ab definition anymore. Another reason to get off the drug in 4 years...hopefully I can keep it at bay.

SickTired

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Jul 12, 2015 09:55AM surfette wrote:

Hey Linda,

I have my settings so that I get notified whenever someone replies so I saw your post on my email.

I learned to surf at age 39 in Hawaii (I'm 51 now). I was living in NYC at the time and spent a summer surfing the the Jersey shore before I moved down here. I haven't surfed too many places: just California, Puerto Rico, and Costa Rica. I love going up to Brevard! I live in the Boynton Beach area, we don't have very good waves here so I take trips up to Cocoa Beach whenever I can. I went with some surf buddies to the Watermans Challenge up near Lori Wilson a few weeks ago. I've also surfed Patrick AFB, there was a place I've gone to a few times, I think it's called Picnic Tables? I actually looked into renting a little condo on the beach up there and might do that at some point just to get away from the South Florida chop for a while. We should keep in touch and maybe meet up to surf the next time I am up there!

That is great that you are seeing some progress from your weight training. Maybe also add in more core exercises as I would think that area might be weakened after surgery. Did you have all your reconstruction done at once, or did they use tissue expanders?

I was pre-menopausal when I started the tamoxifen but now I am post-. I stopped my period about a year after going on it and I had a hysterectomy last year. Too many questionable things growing in ovaries, etc. Better to just be done with it. Sometimes I think I should have just had a double mast and reconstruction to not have to always worry about it coming back!

I guess I am going to have to do more research to see what I can expect in the way of improvements with joints after discontinuing the tamoxifen. . . my onco by the way denies that tamoxifen causes these joint issues, she says it only happens with anastrazole. She says my joint issues are due to garden variety aging and I'm like, no way, not with someone who takes care of themself as I do with weight training, exercise, etc.

Anyway I will PM my email so we can keep in touch!


Kate

Dx 9/14/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 12, 2015 10:39AM surfette wrote:

I have gained weight too which is odd because the tamoxifen is supposed to reduce your estrogen, right? And bodybuilders are always worried about doing things that are estrogenic because it increases their body fat. So one would think less estrogen -->less fat.

Dx 9/14/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-

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