Received DCIS Diagnosis - IT JUST GOT WORSE - Comments Invited

On the issue of electric razors, which is a perpetual topic on the Lymphedema board, many women find them more irritating to the skin than a regular razor, so you need to use judgement. For the smoothest shave with the least risk of skin breaks, lots of women prefer to use a multiple-blade straight razor with a good shaving cream while watching carefully in a mirror. If you get a nick from either method, clean well, use an antibiotic ointment, and keep a careful eye on it for infection.

Cycle-path, there's no statute of limitations on LE, unfortunately, and all the trauma to your arm that has NOT resulted in LE may mean one of two things:
1.) you have a very robust lymph system that is in very little danger of letting you down, or
2.) the series of continuing insults to your already-compromised lymph system will eventually reach a tipping point and be overwhelmed, resulting in life-long lymphedema.

Sadly, there's no way currently to predict which category you're in, and I sincerely hope it's the first. But I sure wouldn't want anyone here to get the idea from your post that they can safely deny the reality of their own risk. We all choose the compromises we're willing to make to all the risks involved in this rotten breast cancer journey, but even if we choose to ignore them, we deserve to know the risks are real.

Just a thought!
Binney

I had a bmx but only had nodes taken from one side. I understand that they take bp on your leg if you've had nodes taken on both sides. Not sure about needle sticks and IV's.

Caryn

I just had nipple recon yesterday, colonoscopy in June as well as exchange surgery in June. I get my IV in my foot for the surgeries and my port at the colonoscopy. BP is on my ankle. It's a bit more accurate there on me. Higher on the leg indicates I have  high BP. Near the ankle it's a bit higher but still in normal range. I have LE in both arms. Stage 1 on 10 node arm and stage 0 on 4 node (AND) arm.

Since I still have my port I get blood draws there. I got my flu shot in my butt.

Oh and also when I had my liver CT I had to fight to get the IV in my foot. I think she knew I was about to walk out otherwise.

It was day surgery both times. But even if it wasn't they can put in a longer tube so it can reach your foot allowing you to walk around.

BlairK I was scared to death of Lymphedema (LE). It's not great but not as bad as I thought. I can live with this. LE is much better than cancer. Seriously if it's caught early it can be managed. But best to reduce the risk: linky 

Do note that site has a lot of good info but don't let it scare you. You need to talk to your doctors about t his too. Most women do not have  huge arms like is shows in the picture. This is why you need to understand what the signs are so you can catch it early… so it never gets that bad. Even when my arm is at it's worst no one would really know unless I pointed it out that it's swollen.

I had my presurgical appointment today with the plastic surgeon. (surgery still a go for Oct. 13th) She marked me up for the incision lines so I am quite colorful with black, purple and red permanent marker all over my boobs. Guess I won't wear a low cut or white shirt on my 'last' day at work tomorrow...that will get people wondering... LOL

I did ask the nurse if she has done blood pressures on the leg for people that have undergone double masts and are concered about LE.  She said she has done them on the calf, but hasn't done them while working in that office.  SO I guess since it is my health and body that I am wanting to protect, I will insist after surgery is completed, that I want BP's, IVs, and needle sticks in the alternative places. 

Funny, how they gave me a card that says for me NOT to have any MRI's while I have the tissue expanders in but they don't give you any warnings about lymphedema. 

The good news is that my BP was a very normal 118/70  !!!  wooooo hooooo....I usually run very high, so my new BP medicine is working.  ahhhhhhhhh......one less worry.

BlairK--I understood what you meant about your kids and interacting with your wife.  May I make a suggestion from when I had my hysterectomy?  It was suggested by some wise women that the kids be allowed to do side-by-side snggles---me in bed and them sitting next to me.  At the time my kids were 4 & 6 and I had to do something--can't tell a kid no hugging mama for 4 weeks!  Anyrate, it worked for us.

Another thing that worked well was a big basket on the bed with the remote, my book, water bottle etc--all the stuff you might want.  When I needed it, it was right there, when I crashed, it was easy for DH to take it off the bed.

Best wishes to you and your wife.

With drains, my BS said no showers, but PS said showering was ok after three days and that they were his drains. Lol. With that info, four drains and a pain pump I decided to shower on the third day. Biggest production ever and way more work than it was worth.



To hold the drains, i used one of those glow in the dark necklaces and clipped them onto it. My husbands idea and it was brilliant. Worked great. I only showered a couple of times tho as it was just so much work and I couldn't do anything with my arms.



I also got a big foam medical wedge pillow and propped around with pillows. I slept in recliner for a few days but after three days, in the middle of the night I couldnt take it anymore and knee walked my way into bed. Husband woke up with me on the wedge thrown next to him.



The pain pump makes such a huge difference I hardly used any pain pills also. I took them at night mainly so i could sleep in the recliner.



If you have a non-fabric recliner, they can get hot. We have a wide leather one and I covered it with a full-sized mattress pad. Not the most attractive but it worked great. The recliner was very useful during the day in the family room where i hung out.

For what it's worth, I told my BP that if they discovered cancer in the SNB, they were not to take any more nodes out. I wanted to be able to participate in calculating the costs and benefits.

Blair - So glad to hear your wife is doing well.  I'm impressed with her level of pain.  I'm sure I was taking more than one pain pill every 24 hours for pain control! That was nice she was allowed to stay in the hospital a couple of nights.  I was discharged less than 24 hours after my surgery. Please continue to let us know how she is doing.