Fit before cancer - does that make it harder?

mitziandbubba

I am really struggling. I am really into fitness and I was in pretty good shape before diagnosis. What I am finding is that trying to go back to the gym is hard. I don't know what to do and not do. There seem to be ample guidelines if you aren't someone who trained before cancer but for those of us already exercising more than most people, what do we do? It's hard not to overuse the arm - what does that even mean? I was into weights and I was quite strong before my surgery. - in some cases, I was lifting more than my husband. When can I lift bigger weights again and not the little pink ones?

I'm seeing a LANA certified PT she says I don't have lymphedema but suggests maybe a very light sleeve for weight training. Does anyone else use a sleeve who doesn't have lymphedema?

Also those who had radiation, did it affect your stamina and balance? My balance was awful when I went back to the gym which was about 2 weeks post radiation. I could not train during - I was wiped out and just went on little hikes with my dog for exercise.

edj3

The fatigue from radiation can last from four to six months--so my RO told me. I didn't want to believe her but she was right. I found that I was fatigued either way so I gutted out my runs (I work out early early) and the rest of the day fell as it did. I'm just now coming up on four months after the end of radiation and the fatigue is better. I'm still not where I was, which is frustrating, but I'm better than a couple of months ago.

I'm more of a runner, although I do cross train w/ weights. And I did run w/ a sleeve in August and September on the advice of my lymphedema-certified OT. It didn't hurt and quite possibly helped.

I find getting flexibility through my left shoulder both slow and painful--my pec and armpit got fried and my RO says it's scar tissue.

MountainMia

I get ya! I just started going back to the gym and it's a little frustrating. I was no power lifter before. I had a routine of mostly free weights (mostly dumbbells) I ran variations of about 3 times a week. I started back with about half the weight of before. I'm already increasing it a bit, both weight and reps. Yes, stamina is poor. Yes, balance is a little off. It's getting better.

Start slow. Get really comfortable at a level and go up from there. Be patient with yourself and just keep at it. And if you don't make it to the gym, your dog still loves those hikes.

mitziandbubba

edj3, I don't want to believe it either. I'm almost 3 months out but I am definitely not the same as I was before at all. My RO was a bit cagey about how long I would feel the fatigue. I was running around after 1 week but I was very tired. I still don't feel like I once did. I hope that things continue to improve b/c if this is how it's going to be I am not happy. I was so happy to skip chemo I didn't count on rads being hard. For me it really was hard.

One rude woman actually made a comment - she said it wasn't fair that I didn't have to swing the kettlebell as many times as the other people in my training group that day and why was mine smaller. I was in shock. I said "hey, you keep your eyes on your own paper" and I thought about her when I did my ball slams. I should have just said "I am two weeks out from being treated for breast cancer". I even had my radiation tan still visible on my upper chest!

I was so mad at this woman's comment, the next time I saw her I grabbed the biggest box in the gym for my box jumps and I used my anger to leap into the air. No one else is using that high box! Of course she made a comment about how she wasn't going to use that box to which I said "well that's fine b/c it's currently being put to good use."

MountainMia, I'm glad to hear I am not alone. Although some things are coming back very fast. I went from not being able to do one sit up my first day back to 100 a week or so later. I don't know what the other people at the gym are thinking about me now!

Moderators

Hi there, mitziandbubba! We totally understand your frustrations - it's hard to get back to where you were before, and your body needs time to heal after what you've been through. And as edj3 mentioned, the recovery after radiation can take several months. It's good that you're working with a physical therapist, but it's so important to go slow and not overdo it. Frustrating, we know! But it's a long road. Just stay the course and listen to your body, and you'll be back to where you were soon.

The Mods

SummerAngel

I've been lifting weights (not professionally) my entire adult life. I just started slowly after my surgery and am now as strong as I ever was. My LANA-certified PT started me back with more weight than her clients who didn't lift and she did NOT recommend a sleeve.

mitziandbubba

@SummerAngel I am going to see my PT again tomorrow and I am going to ask lots of questions. If she suggests a sleeve I am going to get another opinion as I have heard sleeves can do more harm than good if you don't have lymphadema. So confusing all of this!

I do have some tiny swelling in my arm and breast, she said it is not lymphedema but she did seem concerned. Of course, I have been panicking even after she said no lymphedema. She gave me lymphatic drainage massage to do daily - I love doing it actually, very relaxing. I still have pain in my elbow. I had a rough, rough time recovering after the SNB - which they did separately b/c my case was very complicated and they didn't know what they were looking at until they took the tumor out. So two surgeries within a couple of weeks and through the same incision.

I started working with a trainer after radiation ended and I started with no weight but my trainer has me using 8 and 10 lbs for things - I could do more than this before but I'm worried it is moving too fast. The trainer actually wanted me to enter a fitness contest but I don't want to do that - especially now when I don't feel ready. So I worry she is pushing me. I gave her the handout for trainers from Step Up Speak Out and she seemed to understand what not to do. I live in a small town and there isn't a cancer certified trainer. I found someone an hour away and the first thing he said was I'd need a sleeve and that was a red flag that he wasn't up on the latest.

MountainMia

Here is a Step Up Speak Out handout for exercise guidelines.

https://www.stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf

edj3

Yeah that sentinel node surgery is a bear. Then add radiation and my armpit is a tight angry thing.

fd1

I haven't been here in a long time but popped in to add some news to another thread and saw this. I was extremely active before I was diagnosed in 2012. I didn't do anything for around a year and a half (my treatment ended up taking that long). I really had to work my stamina back up but after a year or so, I was in better shape than before. I do anything I please in the gym. The doctors at my hospital seem to think that activity is only beneficial. I have mild lymphedema in my hand as I had a mastectomy and radiation. I've never worn my sleeve and it's never gotten worse. Exercise actually seems to help it with the exception of wrist intensive things like burpies. Anyways, perhaps I'm negligent/stubborn, but I never wanted to make any of this a reason I couldn't do something and my doctors agree.

mitziandbubba

fd1 - The very first words out of my mouth after hearing "I'm sorry its cancer" were "Can I still go to the gym?" Not "Am I going to die?". And if the answer had been no, I would have gone anyway. I'm not willing to give up that part of my life either. If they still told us not to lift more than 5 or 10 lbs I have no idea what I would do.

In the beginning, I was looking at having all nodes removed (they thought things were much worse for me, my case was complicated) and I remember being in the leg press and my husband saying that I would never again lift the 45 lbs plates again after the surgery. I know that even with many nodes removed, I could have worked my way up to it, but I started sobbing right there. I didn't end up with many nodes removed but even if I did, I was lifting those plates once I felt ready.

I am so frightened of lymphedema and I tend to overtrain. I actually hurt my shoulder before surgery bc I went nuts trying to be as strong as possible.

In general, I am very annoyed at the lack of guidance in terms of fitness. My surgeon and others just said "go back to your normal activity" and my husband laughed. The day after my biopises I was in the gym and I got yelled at when I told my docs. I mean, normal activity for me is weights, pilates, dance - I love to move! During treatment I couldn't do much and it really affected my mood. I am someone that needs to exercise. It staves off depression for me.

Ingerp

Your BS will clear you for weightlifting. Start out gently but there’s no reason you can’t end up back where you were pre-BC. Keep in mind cording can show up long after rads, and in my case it was related to adding/increasing weights. It happened to me several times, including a year after rads. I called my BS the first time it happened, they confirmed it can be related to weightlifting, said I could get a referral for PT, but also said it would eventually resolve on its own, which it always did. Yoga can really help with stretching/opening up that armpit area.

mitziandbubba

In terms of yoga - that was the first thing I tried 3 weeks after surgery (no down dog or anything like that) and OWWWWW. Maybe I can try again. I also got a comment from someone "why can't you do the poses" and it upset me - I didn't say "I just had breast cancer surgery" but now that is what I would say, I am comfortable talking about it. I would never say something like that to anyone, we all have our own issues.

Runnermum

I was diagnosed in April Of 2017. Ran, walked and did some strength work thru out my 4 treatments of DD A.C. And 4 treatments of DD Taxol. Finished chemo in Nov 2017. My run was a crawl at end of chemo but 3 weeks later on Thanksgiving morning I ran a 5k with no walking. ran regularly thru radiation and finished the end of Jan 2018 and started Tamoxifen the same month. I started my spring half marathon training 2 wks before I finished radiation. May of 2018, 6 months after finishing chemo and less than 4months since finishing rads, I completed my half, my finish time only 5 min slower than the last half I ran 5 months before my diagnosis. I did PT for my armpit with a lymphedema specialist and a regular PT the spring after radiation. Have never worn a sleeve or had any issues with lymphedema even with regular strength training and weights 2-3x a week. my arm does get achy at times and I still need to stretch regularily. I am now taking armidex and 2 wks ago ran a 10k setting a PR and finishing in the top 8 of my age group while also being at the top age-wise of my age group. I am almost 49 yrs old. I have aches and pains from chemo, radiation and the armidex but refuse to let that stop me. In 2 months I will start training for a spring full marathon. Believe you can and that you will come back stronger. I truly believe our activity levels prior to diagnosis helps us thru our treatments and after.

edj3

Yeah there's not much guidance for people like us who are very active and fit. I know my care team is puzzled by what they probably view as my obsession with running and fitness.

Down dog remains elusive right now, I think I'm more of a weird slanted table. I'll get there.

What I have struggled with and mention here in case others have too: I started tamoxifen on Sept 23. I'd run three 10k races the previous three weekends (was a local 30K challenge) and won my age group, so things were good. About 10 days into taking the tamoxifen, in addition to having hot flashes (did NOT have those in menopause) and some weird aches in joints and that gross vaginal discharge, my heart rate started spiking dangerously on my runs.

I stopped taking the tamoxifen three weeks ago, things are a bit calmer but not yet back to normal heart rate wise. I see my MO's PA later this afternoon and I suspect I'll be referred for a cardiac workup. That's fine, whatever. But I suspect it's the tamoxifen.

mitziandbubba

edj3 I am sorry that happened to you, scary stuff! I started Tamoxifen in August and I feel like I had every side effect - mood swings, insomnia (still a struggle but always has been), etc. Now that has all seemed to die down and here is my main side effect...my skin looks fabulous. I had struggled with hormonal acne before and now my skin glows. I get compliments from strangers in the street - I do use great skincare products but honestly, I think it is the Tamoxifen!

And I hear you, my doctors were baffled by me too. I showed up for my tests in gym gear and I remember them asking me why I was dressed like that - b/c I'm going to the gym guys! When you go to a gym/are active, you are surrounded by others that are too. It made me forget that most people aren't. I remember when they told me that if I had an MX that I would need to be able to get up off the couch without use of my arms and I thought - there are people that can't do that? Of course there are - my very close friend had that situation. I spent a lot of my time trying to get up off the floor without arms b/c I was so freaked out. I never had the MX so it wasn't an issue.

At radiation there was a woman who was a triathlete - I never met her but they told me all about her. So compared to her, I was a couch potato.

All of my doctors brought up my fitness and told me that it was going to help me so much. And it really has. I am so grateful that I started with fitness long before cancer, because having to start now would be a big challenge. In some ways though, it has been harder on me b/c I am comparing myself to before.

mitziandbubba

And @runnermum - you are really inspiring me! Thank you! I am so hopeful I can be strong again. Also, I admire anyone who runs b/c that is so hard for me.

Runnermum

mitzi...I think we are all pretty amazing and inspiring!

EDJ3..that rapid heart rate stinks. Sucks that these meds and treatments they give us can have such negative side effects. Hope you figure it all out!

One thing I will say my desire to co ntinue to run and workout thru all of this came from 2 things...

1) the silent eye rolling and people not believing I could or would when I told them I wanted to run during chemo. Could totally tell they chuckled inside and thought "yeah sure you will" wanted to show them!!

But the most important one was that my kids could see I was still normal and doing my normal things and that helped them believe I would be OK! The first run I did after my 1st chemo was in our basement on our treadmill, our then 13 yr old walked downstairs to go to his room, did a double take and asked me if I was running! "Yep" with a big smile on my face. His smile and ""awesome" that came after made me know how important it was for my boys to see me moving!! That's truly all it took!

mitziandbubba

That is so beautiful Runnermum.

And I got the silent eyerolling too. Although I didn't workout as normal during treatment, I wanted to and whenever I tried everyone just said "you need to rest" which is actually the opposite of what the doctors said. When I was tired from radiation, I took a walk outside. I couldn't do my normal routine but I did something active every day, even something small. It helped.

It's funny how everyone thinks cancer patients need to go to bed and rest. During radiation I would fall asleep sitting up, so I got plenty of rest!

mitziandbubba

So I saw my PT today. She handed me a giant binder of info she printed for me on lymphedema risk. She said I am very low risk but she knows I am nervous, she wants me to read it all. She seems happy with my weight training BUT did tell me that lifting heavy (ie powerlifting) was probably not a great idea for me. I generally don't lift heavy like that anyway, I do more reps less weight as per my former trainer and it works for me. Although I don't like being told "no".

edj3

So I ran all through radiation--not my normal length runs and for sure slower (ran by heart rate so I wouldn't over do it). We had a family reunion the week after I finished rads (long planned), and my younger son gave me this trophy. You can't see it in this photo but he plastered radioactive stickers all over the sides. After he gave that to me, I realized that yes even my adult sons were watching to make sure I was ok and this was part of how they cheered me on.

MountainMia

Fabulous trophy, well-deserved. My adult children focus most on my hair, as that's what they can see most easily, and is easiest for me to describe at a distance from them. However, I do think they are "impressed" or whatever is the right word, understanding that this was a very hard thing to do, and I did it.

mitziandbubba

Wow, I love the trophy! And it is so impressive that you ran through radiation. You guys are wonderful examples of strength for your children. I love it.

mitziandbubba

So this is trivial but today, I could not open a jar. My friends actually call me "the opener of jars" because I am always strong enough to open them when no one else is including the husbands! I was always so proud. So today, I could not open the salsa jar and I started to cry. My elbow is sore and I am no longer strong as I was of course, and I am in physical therapy since radiation ended.

It's just a jar. But it represents a great loss to me. I want my strength back so badly.

MinusTwo

Mitzi - I couldn't open jars for maybe 6 months. I can sooooo relate. It was especially bad because I live alone.

Runnermum

Mitzi one of the most important lessons I learned thru my diagnosis is how to be gentle to myself. It's not trivial and this all does suck but you will regain your strength. I still struggle with my right side(surgery side) but it is still improving! Hugs!

edj3

Chiming in to say MinusTwo and Runnermum are both right. Unfortunately this recovery process takes time. I'm still have a lot of pain in my left pec and my armpit--it's clear those muscles were damaged by the radiation. Like you, I just want my strength and stamina back and like you, I'm needing to be kind and patient with myself. I'm not very good at either, this is definitely a work in progress.

mitziandbubba

Patience is of course NOT my strong suit. What is worse is that I don't look very different - I mean I notice that I'm not as fit but really, none of the changes are noticeable from the outside. My scars are very faint already. I have a little tiny tan from radiation but only I notice it. I FEEL different. I feel like everyone, because I look basically the same thinks that I'm going to be the same - including ME

mitziandbubba

And of course, I want to tell myself that I have no right to complain! I am here, alive, with a good prognosis, both breasts looking very much the same - treatment done in 5 months. What is my problem?

edj3

Think we're related. Everything you said in these last two posts resonates with me. I'm coming to see that regardless of the prognosis or how the treatment went (ie hard mode, easier mode--none of this is easy), it doesn't matter.

MY data point is that my left breast is swollen and painful, that my pec and armpit are incredibly painful, that the scar tissue in my left breast is bad enough that I flat don't see having a mammogram next spring.

And my data point includes a hefty dose of PTSD, thanks to childhood sex abuse that I already did a ton of work on. I had no idea that all of this breast cancer stuff would trigger things for me but oh boy has it. So I'm back seeing a psychologist and while I'm glad I have that as a resource I resent like hell that it's necessary. It's like all the work I already did was invalidated.

I probably should just go post this in the Rage thread.

Euphoriaa

I just saw my SO, she told me that rads pain can last for 2 to 3 years! OMG... She forbade me to exercise with weights, just aerobics (I always hated aerobics, but I will have to do something, I lost a lot of muscle mass with treatments and I wasn't in very good shape before my dx)