leepenn

Ugh - back and leg problems???? Huge bummer? I would say swimming might be a good choice for you. But, honestly, I am not a personal trainer nor a physical therapist. Can you request a referral to a physical therapist? Maybe that kind of person could help?

My support group is also only one time per month... I guess I might recommend you check out http://community.breastcancer.org/
I've been reading two categories with interest - the triple negative and the chemo categories... And you're right - it's not the same as one on one... but it is what we've got....

Hi adelia11,

Hope you don't mind me chiming in here. But there's another great group that provides 1-to-1 support. It's http://www.ImermanAngels.org. They match cancer fighters with cancer survivors of the same diagnosis. They are great people and I'm sure they'd be happy to help you.

Thanks!!!! I believe that exercise is HUGE in making chemo easier....

What's your celebration - do tell! I love hearing happy news!

Thank you so much! I really appreciate the advice.

Thanks Lee. Still feeling ok so far and in a weird way I am almost looking forward to the side effects kicking in this time, knowing it is the last time. At this point, I feel like I can handle just about anything for a few days, standing on my head even ;-) Thanks for the additional info on the drains. I don't think I had them with my lumpectomy, or if I did it was just while I was in the hospital (I was actually in the hospital for 3 days with the lumpectomy because of the anesthesia reaction and a low grade fever). The drains sound a little inconvenient but no biggie.

Nancy

Oh man - take two with cancer - a new cancer???? I feel for you...

I think if I were you, I'd not be willing to anything except the bilateral mastectomy.... Heck - I had just the one cancer, and I wanted to do the bilateral. I was already bumpy (fibrocystic)... and I didn't want to end up with endless biopsies.... Having that 48 hours of oh my gosh - what will they find... repeatedly. Just be done with it. The fibrocystic tissue was noted on the pathology report for both breasts... In a way, that made me feel extra good about choosing bilateral.

Regarding the drains and showering: Do you actually take them out when you shower, or leave them in and just hang them up to take the weight off the ends?

The drains are solidly in you. There will be tubing that runs about 10-20 cm under your skin - the idea is to collect the fluid associated with the trauma of surgery. That fluid drains by a longer tube... and that tube connects to a bulb that can hold around 150 mL or so. So, your fluid drains into there - a lot the first day - less and less with each passing day. At first, it's bright red... and that lessens. You have to "strip" the tubing periodically in order to handle the clots that form etc... The nurses will show you how to do these things.

These drains are basically a part of you for around 7-14 days, depending on your drainage. Once you drain less than a threshold amount... they can come out. It's gross. It's weird. But it's way better than having that fluid build up under your skin... that leads to the formation of a seroma.

After 7-14 days, you go to see your surgeon, and they remove those. It hurts - but it only hurts for like 5 seconds. Then, you go on your merry way, drain-free.

So, when you are buck naked... you have the drains from surgery until their removal. It's not comfortable to have them dangling while showering... so having a lanyard you can clip them onto makes it loads more comfortable.

I hope that helps... The drains do suck, but not having the drains sucks more.

And no worries - anything I can do to make it a little better for the next person is AWESOME!!!! So, keep the questions coming.

PS - how could I forget - CONGRATULATIONS ON FINISHING CHEMO!!!!!

nancyjac, I had a double masectomy plus 2and a half lymph nodes removed. I didn't have any trouble with range of motion or liftfing my arm. I feel bad you have to go though that. I saw a woman a while back have to go throu it it is no fun. Good Luck. Let me know how you are doing. Please!!!
cath1953

1. Did anybody try to talk you out of it (medical personnel or otherwise)?

Medical personnel - NOPE - not a single one. I was asked whether I had considered reconstruction. I asked whether it could be accomplished in just one surgery since I wanted to be very petite in the boobs. It's impossible, was the response. So, I said no thank you. EVERY medical person I spoke with accepted that with no apparent judgement....

OTHER PEOPLE, on the other hand, definitely tried to talk me out of it. THis included on friend who had a similar tumor as I did and had elected to go with lumpectomy... and told me that I would have all these range of motion issues and oh... did I really want to go without boobs etc... It was FULL of judgement. That was the worst case... Interestingly, she later messaged me an apology when she ended up having a second cancer in one of her breasts... and she elected to go bilateral mastectomy immediately... but with reconstruction.

2. Do you feel the risks and recovery were the same whether it was a single or bilateral?

Interesting question... The "healthy" side is not numb... and I have slight more range of motion on that side. The side that had the cancer also had the sentinel node biopsy, and some numbness and loss of range of motion has occurred there. But, it's not much... Everyone is so different in terms of how they recover. I was considered "FAST" by many... ridiculous even. At just days after the surgery, I could life my arms to retrieve things from shelves above my head - not far above my head... but above my head none-the-less. Many were SHOCKED.

3. Was it done as inpatient or outpatient? I tend to be a good outpatient, not so much as an inpatient.

I was there over one night. It was good. They kept me drugged up until very early in the morning the next day... I moved around a lot... had no issues... Went home. I had the option of staying an additional night.

I think staying one night is not a bad idea... You get training with the drains... You get drugs on a schedule... I'm not usually a good patient... but I was good with the one night there. Also, I think it was better for my sweetie pie...

4. To what extent and for how long were your basic activities limited post surgery? What kind of help did you need after surgery (i.e. using the drains, showering, getting dressed, etc.)? How long before you were able to drive?

I don't really drive much... I was on my bike again at day six.

Showering with the drains - get some kind of lanyard you can hang them from while you're showering... Otherwise - you might just have trouble washing your head...

5. Were you on any kind of pain medication and if so for how long? Most prescription pain meds make me severely constipated and it seems like that pain may be worse than the pain I am taking the meds for in the first place.

Day two - just ibuprofen... I was good to go.
Broken bones = worse than bilateral, in my opinion.

That said, some people get a lot of pain on the side with the sentinel node biopsy...

6. I also get quite nauseous from most anesthesia. Did you have any trouple with that and if so, were you given any thing to alleviate that? In my case, it would have to be something I could take pre-surgery, since once it hits, I can't keep anything down for a day or two, not even water or pills.

I did not have any trouble with anesthesia... So no worries there. They can do zofran if you end up having trouble (not sure if I spelled that right). Of course, the anti-nausea drugs have similar issues as the anti-pain drugs... Dang it - pooing is just something that makes every day better!!!!

7. Have you had or are considering any kind of post surgery professional physical therapy? I am 64, started chemo in early December and was fairly active for my age prior to that. But chemo has put a pretty big quash on that, though I still try to walk and keep moving as much as I can, but I have some pretty significant muscle weakness from the chemo and already has osteopenia going into it, so I am rather concerned about bone and muscle loss. Before chemo I lifted weights regularly, walked a lot, jogged a little, and bikeriding (both stationary and outdoor depending on the weather). Now it seems all I can do is barely lift a bag of groceries from the car to the kitchen and walk once around the block, and that very slowly with a few breaks to rest. I recognize I may be unlikely to ever get back to my pre-cancer "form", but I sure want it to be better than this.

Be optimistic - keep building your fitness. When you go into surgery... you'll already be feeling better. I felt so much better three weeks out from my last chemo treatment... and surgery was honestly a breeze compared to the last two cycles of AC... Ugh - those were horrible!

Anything you can do to strengthen your body before surgery is WIN WIN!!!! So, keep walking... Keep lifting those groceries! If you can, lift the groceries up and down a couple of times....

Keep doing what you're doing - move!!!! You move as much as you can move... and your own pace... and your own schedule. As each day passes from your chemo... you'll see yourself getting stronger and stronger!

Before you know it, you'll be lifting two bags of groceries without giving it much thought. You'll start WANTING to lift weights again.

You may be able to get to pre-cancer form - don't assume you cannot! That is my goal. I hope to return to competitive athletic fitness! I wanna race my bikes!

For post-surgery... A couple of things...
1- you might have trouble getting a regular shirt off over your head. Have two shirts available for going home from the hospital - one - your favorite soft t-shirt... and two - a button down. That way, you know you'll be set.

2- I find that wearing a very light weight microfibre bra is very helpful in terms of not having frabric moving over my scars (soooo sensitive at first!). During the first week - I just work soft cotton sleeveless shirts (I could life my arms over head)....

3- ask if you can be glued... Glue rocks - in my opinion. They close the surface incisions using a layer of glue... and it just peels off when it's ready to peel off. What I liked is that my skin didn't react to it... I have issues with adhesives.

4- get a lanyard to hang the drains from during showers.

5- wear baggy pants with pockets - you can put the drain containers in your pockets... and then put your shirt over the tubing... and no one is the wiser that you've got those things. That worked best for me.

8. Are you having any follow up radiation treatments? My plan is to have radiation after surgery (something in the neighborhood of 20 or so treatments over about 4-5 weeks) but at this point I don't know yet when those will start. I am triple positive so I will be continuing Herceptin for several more months and will be starting on a hormone suppressant (post menopausal) at some point for a yet to be determined amount of time.

Do you have to have radiation even with the bilateral mastectomy? That's a bummer, but I'm told that radiation is a breeze when compared to chemo. It sucks, but it's manageable....

No - I did not have to have radiation. My tumor size was below the threshold... and there was no evidence that my chest wall nor my lymph nodes were involved. So, bilateral mastectomy was the last step in my treatment plan... So, as of right now, I am post-treatment (YAY!).

9. This last question is a minor nit, but since I have already gotten so long winded here, I though I would go ahead and throw it in. Did you have hair loss and, if so, has it started growing back yet?

YUP - bald bald bald - everywhere!
YUP - it had jsut started to fuzz back at surgery time... and now I have a nice coating of hair over my head. Feels nice! I can almost go without a hat to keep my head warm these days, which is nice. And it's super duper ridiculous soft - like a kitten.

whether I'm a patient or survivor what I try to keep in mind is that I am not a victim of cancer. I've got to fight hard while I'm going through it and help others when I get through it.

I believe referring to ones self as a cancer survivor or a cancer patient is up to each individual. How you feel you are. I was diagnosed with leukemia on 3/2011. I am a registered nurse but unless you specialize in oncology you (a nurse), are just like everyone else, asking the same questions and at age 44 with a full life I consider myself a survivor. I had a stem cell transplant, however leukemia is in your blood and goes thru your entire body, it's not like a tumor that's been removed and treated with radiation and chemo. I have been cancer free since 4/15/2012. Transplant was on 7/4/2012. I recently walked on my treadmill thinking I was good to build some muscle as I lost 60 pounds with chemo. I ended up injuring my knee which I see an orthopedic surgeon this week. My oncologist told me to face facts, I have at least another 18 months before I am physically able to work, and then not in patient care, I will have to do consulting or get another degree. Saying that made me question again, patient or survivor, cancer hit every organ I have and each one has to heal for me to work, however my brother's stem cell donation has taken but never considered a cure. My mother had breast cancer, after 5 years cancer free she was considered cancer free and a survivor( she passed shortly after that from stroke). So, I believe I will consider myself a survivor, as I am cancer free. I will return to work, a home based work, I'm not taking chances! Prayers to all.

These are all great answers - thank you so much!
I think I am just Lee Penn....
Not cancer survivor... Not cancer patient...
Just Lee Penn, who has lived the cancer treatment experience and hopes to never have to do so again. But also, Lee Penn is a mom, a professor, a cyclist (hopefully at racing level again), an advocate for alternative transportation, and .... so on.
THANK YOU!

First and foremost, you have to be ready to be TIRED. You'll get out of breath much faster than you're used to. You won't be able to go as far. But, anything you do will help you be less tired in general.

So, I would say head out and plan to walk run.... Start with walking. When you feel warmed up, do a 1 min jog... return to walking. See how you feel.... Then, if that felt good, consider a 2 min jog.... Just run little experiments to see how you will do with small increments... and grow your increments...

DO NOT look at this as training so much as maintenance. I had the attitude that I wanted to keep as much as I could - as much cardio and as much muscle mass as I possibly could. I did pretty well, but I sure did lose a lot.

But, when my hemoglobin was down in the neighborhood of 8 - and even slightly lower - well... you just slow down. One flight of stairs would require a small break before moving on.

But, in my opinion and the opinion of the health care team I was with, don't stop moving unless you absolutely have to....

Riding a bike is awesome because you can coast when you need a little break. Use your easy easy gears for hills... You'll feel those for sure!

No matter what - don't push your pace too hard. Just go as hard or easy as you feel like it... but not as hard as if you were training for a race. If you head out, and then you head home minutes later... that's okay! I would say that around 9 times out of 10, moving helped me feel better. About 1 time out of 10, I just realized I needed a bit-o-rest.

Does that help?

So I have no experience with this but I did study phantom limb pain in college. I know that for amputees they use mirror therapy to help with the pain and sensation of the phantom limb (you can google it..it works really well). It sort of tricks the connections in the brain that are still there for the body part into thinking there is a body part there again and then they can work through the pain. I'm not sure how this would work for nipples but it could be worth a shot if the pain is bad. I also know that most of it is caused by the nerve endings that have been disturbed from surgery, massage and gentle touching (sorry if that sounds bad ha!) may help to get the nerves to calm down.

Hey everyone - thanks for the responses...

When one talks about nipples, lots of people get uncomfortable... Interesting, eh?

Anyway, the phantom nipple sensations have abated dramatically... I no longer feel absolutely sure I have nipples. Now, I feel that way occasionally... but not more than that.

I massage my scars daily in hopes of minimizing potential keloid formation... I've got a pretty thick scar on the left - over maybe 30% of the length of the scar. Massage is supposed to help with that.

I don't have much pain... My right side - the side of the sentinel node biopsy - is still quite numb... WHich is WEIRD! When I put on deodorant, I can tell I'm doing it, but I can't quite feel it. Strange.

For those feeling loads of pain... My surgeon told me that this has to be dealt with early on... Apparently, it's a nerve thing that can be treated, but only early. It's called post-mastectomy pain syndrome, and there's a short-term medication that can help with that. He told me that the window of opportunity is around 4 weeks after surgery. So, if you are experiencing this kind of chronic pain, please consider talking to your health care providers about it!!! I seem to have escaped this potential side effect.. I just have the weird numbness, which I'm getting used to. And the numb area seems to be slowly but steadily shrinking. I just hope it keeps going in that direction! Weird how everything is so connected like that.

Anyone else have a bizarre spreading feeling in the chest upon drinking cold liquids? That's a weird one too. The spreading feeling is slowly but surely shrinking as well, but everytime I drink some cold water, it feels like my esophagus is like 6 inches wide!

Ok - have a great day everyone. Thanks for the thoughtful responses.

Lee

I got chilled the other day and also had the sensation that my nipples were reacting and also had to look to see if they had "regrown". One can only hope! When I get "fills" I feel the needle go in alternating from one week on one side, then the next week, I feel the needle on the other side. This is strange. But I'm hoping that some feeling is coming back.

Not sure what you're talking about, actually. I don't seem to have any syptoms of lymphodema - at least - sofarsogood - ha ha... pun intended! Anyway, I'm doing well with my recovery from the bilateral mastectomy. I think the hardest thing is that I can't quite sleep in my usual position, and so I have been snoring and keeping my better half awake. A sleepy better half is kind of... well... crabby.