Dis Breast Cancer Survivors Part IV - GAGWTA

[The Mystery Machine]

TMM did they give you arm "exercises" to do?

Nope. I was expecting it but got nothing from the surgeon.

Oh believe me, when I see him in 2 weeks, I will be explaining how I need to get back in shape. I need to be able to dead lift 40lbs asap. I will push to see my PT.

 

[TheDisneyDoll]

I think it's nice. I've had people "honor" me before, too. (And we have honored eachother here at our various fundraisers like Relay for Life, etc.) It means a lot.

It just means that you're acknowledging this person's struggle and you're showing you care and helping by assisting with fund raising to fight it. A beautiful thing, IMO. Thank you.

oh thank you I just wanted to make sure I wasn't missing out on something important!

 

[Pea-n-Me]

Nope. I was expecting it but got nothing from the surgeon.

Oh believe me, when I see him in 2 weeks, I will be explaining how I need to get back in shape. I need to be able to dead lift 40lbs asap. I will push to see my PT.

Hmm, I wonder why? I would call tomorrow and ask about it; if they missed it, then ask them to send you something asap via email so you can get started with those. It's possible the surgeon wants you to wait a bit, but idk.

http://www.breastcancer.org/treatment/side_effects/lymphedema

I'm not sure about dead lifting 40lbs any time soon. The one thing you don't want to happen is to develop adhesions to the surgical area, which can happen if you do too much, rip the tissue, and scar tissue forms. That inhibits normal healing and would likely be problematic down the road with pain and possibly need for further surgery, etc. You have to give it time to heal right. You still have radiation ahead of you. Frustrating, I know. (I had a hysterectomy last year and it blew my mind how slow I had to go! It wasn't even optional not to; it knocked me on my butt, but good!)

I also meant to say before, isn't early detection a beautiful thing? I know recently they've come out with new guidelines for mammograms. I saw something a couple of weeks ago that talked about every two years instead of yearly. I know my cancer grew very fast (grade 3, very aggressive) in 11 months - previous mamm was completely clear, next 11 months later had this beast. I don't even want to think about what it would've been like had I waited another year. As it were, it was manageable, thankfully. But it had spread locally (positive nodes) and was about 2.3cm. I have a friend who had a 7cm tumor, described it like an egg. In fact, through her, I met a bunch of other women with large tumors (> 3cm) and they all had to do chemo first to shrink them, then they went in to remove them. I am not sure that waiting two years is a good thing, and I can't help but wonder if it's driven for costs, effectively putting so many women at risk. Heaven help us all if they eventually stop paying for yearly mamms.

oh thank you I just wanted to make sure I wasn't missing out on something important!

Not that I can think of, unless someone else knows more. Your post reminded me of the feeling I had the first few years after my treatment doing the Relay for Life - walking, hand in hand, at night among all the luminaries lit with people's names on them - all cancer survivors -, with other cancer survivors. It was both moving and empowering! People from my own town that I didn't even know had cancer showed up and did that walk with me. I also had a good friend who was diagnosed with cervical cancer after me who hadn't even shared that news with her kids. I think she hadn't accepted it herself, really. She was hesitant up to the last minute about doing the Survivor's Walk, but at the last minute, she grabbed my hand, and we went together. Lots of tears that night, but in a good way. Nobody even wants to think about having cancer, but when you're among others who've been there, too, it's somehow ok. (Ok, now the tears are starting here. Not supposed to do that on a Sunday morning having my coffee!! Lol) But don't feel bad, that's what this thread is for!

 

[snappy]

I saw my name mentioned above re: post surgery ancillary exercises. I did do my exercises religiously as prescribed, and even for a few years later (long after I was officially healed) when I was told that every time I thought of it to raise the affected arm high up my head to encourage lymphatic fluid to flow downward.

The exercise instructions I followed were very specific, with diagrams and which ones to do in which order, in a booklet I received when I was released from the hospital. So it was a hospital publication.

My case is different, a mastectomy with very large margins, basically left me with a concave chest, and many lymph nodes removed, I think more than 15. My arm pit seemed concave to me for a while.

The exercises were precisely described as to which ones to do the first couple of weeks, and when to graduate to the next group of exercises. There were also very very specific things listed to avoid for the rest of your life, like tight jewelry or sleeves on the affected arm or wrist, not hanging a purse on the shoulder of the affected side, not to carry grocery bags hanging downwards in the hand of the affected side, and not gardening without gloves on. It also described caution with burns, cuts, and bug bites on the affected arm and hand, as lymphedema can really set in after any kind of infection. Also, living in south Louisiana where we eat a lot of boiled crabs, shrimp and crawfish, there was an added section re: being very careful when peeling any of those little critters since due to the risks posed both by the sharp edges and the risk of bacteria entering through a cut on the affected hand, they felt it was important.

I too bought a lymphedema sleeve, but did not wear it very much. I also met with a nurse who was a lymphedema specialist who measured my arms, and gave me advice.

So far, 11 years out and all is well.

I would call your doctor's office tomorrow morning, if you had a node or nodes removed, you want to be instructed in the appropriate exercises. This is important.

 

[snappy]

Re elective surgery, my mom is 85. Her internist (also is my doctor) advised against an elective bladder lifting surgery about 5 years ago. Mom has a condition, prolapsed bladder, that is very uncomfortable and aggravating to her, but she has learned to live with it. The internist (also a woman) understood her discomfort but had seen too many senior patients end up not the same mentally after anesthesia. It was good advice, since September 2014 mom had no choice but to have oral surgery, under anesthesia, for a salivary gland tumor, and in September 2015 fell and broke her wrist so badly she had to have another surgery with anesthesia.

She recovered ok from both physically, but her memory and judgment took a real hit. The oral surgery and the wrist surgery were medically necessary, but the bladder surgery was elective. I will forever be grateful for the advice of the internist.

Her previous surgery was about 7 years ago with a mastectomy. Lots of surgery to have, with general anesthesia within 7 years.

 

[The Mystery Machine]

I will call and ask. Thanks guys.

 

[smiley_face2]

Lot's of good information here ladies!! TMM....I don't want to offend, but please keep in mind, you are going to have a new normal now. It wasn't that long ago, none of us would even be here after a few years, so having this gift of life is pretty amazing. If it means having to adjust to some new ways of doing things, or perhaps not doing absolutly everything we used to do, or taking longer to do it, that is a small enough trade Please be easy on yourself! You are obviously a very determined person and you will get there! You don't want to do anything that will set you back and mean you take even longer to get where you want to be!

 

[The Mystery Machine]

Lot's of good information here ladies!! TMM....I don't want to offend, but please keep in mind, you are going to have a new normal now. It wasn't that long ago, none of us would even be here after a few years, so having this gift of life is pretty amazing. If it means having to adjust to some new ways of doing things, or perhaps not doing absolutly everything we used to do, or taking longer to do it, that is a small enough trade Please be easy on yourself! You are obviously a very determined person and you will get there! You don't want to do anything that will set you back and mean you take even longer to get where you want to be!

LOL, and yes it is true. I do gardening/landscaping and work in a nursery during the planting season. So being able to lift weight is one of my goals.

I have had pt before and it took me a yr to begin to get back in shape. You have to start at the beginning.

I put in a call to the nurse navigator. So, we will see what she says. My appt. with the surgeon is on the 9th.

 

[snappy]

Please keep us updated! I am particularly interested in her input about how you should protect yourself with your landscaping work. I have bought elbow length gardening gloves. And I still use them. Risk of lymphedema is life long.

 

[The Mystery Machine]

Please keep us updated! I am particularly interested in her input about how you should protect yourself with your landscaping work. I have bought elbow length gardening gloves. And I still use them. Risk of lymphedema is life long.

Ack. Don't like to hear that.

The nurse navigator called back and said no exercises until I am released by the surgeon. Their reasoning was to lessen risk of a seroma developing. I see him on the 9th.

 

[Pea-n-Me]

The nurse navigator called back and said no exercises until I am released by the surgeon. Their reasoning was to lessen risk of a seroma developing. I see him on the 9th.

I figured as much. They would've made sure you knew about them otherwise. You'll get a packet at your post op visit. I do have a seroma, and I think smiley said she does too, so maybe enough people got them previously that they changed the recommendations.

 

[smiley_face2]

I figured as much. They would've made sure you knew about them otherwise. You'll get a packet at your post op visit. I do have a seroma, and I think smiley said she does too, so maybe enough people got them previously that they changed the recommendations.

yes you are right about that! I don't remember exactly how big it is, but it's not small and it hasn't changed in the last 3 years. And it does interfere in them being able to see completely when they do a mammogram, so I get and MRI every year too, and after what happened last fall I wish I didn't have to.
TMM....maybe you need a nice young helper to work with you now! I wanted to be a landscape architect when I was still in school, ended up being a hair stylist! lol... but have worked in my own garden and helped friends my whole life. Annoy my mother in law because I insist on the proper pronunciation of plants like clematis.... LOL! We only have a lot, not acreage, but every inch is filled with plants! lol!

 

[The Mystery Machine]

Please keep us updated! I am particularly interested in her input about how you should protect yourself with your landscaping work. I have bought elbow length gardening gloves. And I still use them. Risk of lymphedema is life long.

Why do you have gloves up to your elbow? Not sure I want to hear your answer.

 

[Pea-n-Me]

I think it's to avoid nicks when gardening. Due to lymphedema and the risk of infection.

I think with just two nodes out, it might not be as bad as someone who's, say, had many out. But the radiation will also contribute. Something to ask your surgeon about at post op. Also get an opinion from your radiation oncologist. Different people will tell you different things. And then you'll have your own experiences, lol.

 

[Dan Murphy]

Risk of lymphedema is life long.

Good morning to this wonderful group of ladies. I do try to read here and keep aware of how you all are doing. You are the best.

Just wanted to say a few words on the thought quoted here from snappy. My wife Marie had her breast cancer, stage III, diagnosed January, 1998. She finished her surgery, chemo and radiation by September, 1998. She had 13 lymph nodes removed, a LOT.

Over the years, no lymphedema. After a couple years, we thought that she was lucky, would not be getting it. Then, after about 12 or 13 years, I think 2010 or 2011, she did get lymphedema. She/I were shocked. We were under the impression, sort of insinuated through the medical folks back in the months/first few years post op, that if she did not get it then, she would not really get it. Not true. Her oncologist and her lymphedema specialist then confirmed it can come any time, even years in the future. And once you have it, you have it.

Marie wears an arm sleeve (several different ones depending on the swelling any particular day), sometimes a hand sleeve, a wrist to shoulder sleeve at night similar of a long oven mitt, and sees a lymphedema massage therapist for a one hour session every week. In fact she is getting ready to go now. It really changes your life.

We feel that the lymphedema was brought on by overuse of her arm that summer of 2010 or 2011 when redoing some things around the house. Marie deals with it, she is a trooper, she always has been. But take this as a bit of personal advice, treat your arms well in all your years ahead. As snappy said, the risk is life long.

And have a great day ladies, you are all the BEST!!

 

[Pea-n-Me]

Thanks, Dan. And thanks for sticking it out here with us - we appreciate your support!

I was actually thinking of Marie while I was writing on the subject here, remembering she had a lot of nodes out. Her story always reassured me, as someone with positive nodes, knowing that she had eleven positive nodes, and she's done so well all these years: still here and still going strong, despite the unfortunate news she's developed lymphedema. I know nodes are part of the staging process, but not having nodes positive doesn't always mean cancer won't recur; and having nodes positive does not necessarily mean it will, nor are they a death sentence, etc. Breast cancer is funny that way. Anyway, thanks for again sharing Marie's story with us. I think that's another important message hearing that lymphedema can develop years later even when it didn't early on. I'd guess you're right about the overuse issue. It was probably just enough to maybe rip some fibers in the tissues inside the arm, which caused a fluid buildup, then it didn't know where to go. I hope it gets better with PT.

 

[The Mystery Machine]

Thank you for your story Dan. That really is food for thought for me. I had no idea since I am brand new to this.

My hobbies and job are very physical.

Pea, you are a nurse. Do you do a lot of lifting?

 

[Pea-n-Me]

Yes, I do. My surgery was in 2003 and I've done a lot of lifting since then. I help patients sit up and boost them up in bed, help turn people every two hours who can't do it themselves (and most aren't exactly lightweight), move people on and off stretchers, help lift them up off the floor if they fall, etc. Countless times. We do have ceiling lifts now, and have for the past several years, but generally they're not used for the everyday helping someone up or shifting their weight around type thing. At home I was lifting three of my dogs up since then, all in the 75-106 lb weight range, but only when they couldn't walk. (Which was the case at some point, come to think of it, with all three of them since my surgery. Probably part of the reason why I have an 18lb dog right now, lol, but I do miss my Shepherds!) I have had swelling issues, as I said, and my affected arm is sore most days lately.

 

[The Mystery Machine]

Thanks Pea, that is pretty uplifting. I just do not think I can do this season at the nursery. We will see.

 

[snappy]

I am sorry if my comments were unsettling. For me, it is a matter of knowing what the risks are, and managing the things that raise the risk. I do work in my yard, etc, with gloves on.
I also watch the weight of what I lift. But in my mind the free tram flap reconstruction I had, and the weakness on my abdomen from where the flap was taken, affects what I can safely lift, to avoid injury.

I think the more you read up on this the better you will feel. That is how I felt and still feel, info is power.