double mastectomy Friday

gayleyr

Has anyone in the group had a double mastectomy? I'm curious about how blood tests, blood pressure etc are administered if lymph nodes are removed in both arms - I always heard you should use the opposite arm - but in my case this may not be possible. Suggestions/experience? Thanks.

cindyclay

I had a double mastectomy in September. My surgeon removed 16 lymph nodes from right side and 12 from left. I had one positive node on the right side. I too am very concerned about blood pressure, blood work, etc. I just have them either use a leg cuff or check blood pressure on my left arm. During chemo, when they took blood out, they used my port. Now I just have them use my left arm, since they didn't remove as many lymph nodes. Is your surgery this Friday? Are you having reconstruction?

24242

My thoughts are with you my dear. I have had a double. I have had nodes removed from both arms and still get blood and pressure. I pick the side I had chemo in, since primary was on right side. Don't be affraid to ask these questions. You will be close at heart on Friday. Be good to yourself....
24242Tara

jeancmici

Hi Gayle,

I did not have a double - just a lumpectomy- but asked about your situation and was told, a leg is used for the pressure. Blood draws I forgot to ask about.

Best of luck to you Friday - while I'm having taxol #2 I will be hoping all goes well for you, too..

Hugs, Jean

nancys

Gayle, I just asked this question today of my radiation Oncology nurse as she took my blood pressure. She said it is possible to take the bp from the ankle but she just goes ahead and uses the arm, because she did not think it would do that much harm.....Think I will ask my doctor about that answer..I will say a prayer for you on Friday morning and ask GOD to put his loving arms around you and get you through this surgery with flying colors. Love to you, Nancy

bogiefan

I have had the same experience. They sometimes use the same arm, with good results. That seems to be acceptable. They just like to take precautions, when they can. Jennifer (bogiefan)

cherdaetwyler

Hi,
I had a double masectomy in Dec. Four weeks after surgery I had a Bard port implanted in the skin just below my collarbone (what they call a sub-clavicular implant). It has a tube that goes directly into the vein. When blood work is needed or for my chemo, they use a special short needle called a Huber needle to access the blood vessels. (when it is not in use the entire port and its accompanying tube are filled with a heparin saline solution that keeps clots from occuring there)
I PLAN to keep this port for the rest of my life or if my life exceeds the ports lifetime to have another on implanted.

Most doctors do the implant surgery unter a local anesthetic.

The few times that I have had things like the heart wall motion scan (prior to and after my Adriamycin chemotherapy) which have shots or intravenous medications which cannot be administered through my port, I have had the IV or the shot into the veins of my feet. You have to have a scrip from the doctor ordering the test saying that you may have the IV or shot in a vein of the foot.

My port is a great thing. Unlike the port that is a long term IV this is designed for people such as ourselves who have bilateral lymph node removal and is designed for long term use.

The insertion of the Huber needle is about as painful as an ordinary needle prick or the lancet for a blood count, but it really is a fantastic thing to keep down the chances of lymphedema. (I have only had minor swelling on a few occasions but my doctor ordered compression sleeves and gloves for both arms. I don;t usually need them when I get enough exercise, but if swelling begins it can get things back to normal in a couple hours.)

Check with your surgeon or your oncologist to see about getting a port implant.

Oh yeah, Blood Pressure readings are taken on your thigh with a special thigh cuff.
My readings are always higher than they were before burt that may be due to the fact that stress has been high each time I have been in a doctors office when they did blood pressure (or in the hospital out patient surgery before the port implant)

Just don't allow anyone to convince you that they can do a blood pressure reading on your arm!!! Perhaps several years after surgery if you have had no lymphedema it is OK but everyone I know who has allowed the arms to be used for BP has then developed a swelling problem shortly afterwards.

There are enough of us out there that there should be some special booklets available for those who need them, but they are not there.

Perhaps I shall write a list of special suggestions and send it to the cancer society.

feel free to write if you have any other questions or send me a private email if you need to. I love to answer any questions I can.
You will be in my prayers as you go for your surgery.
Cher

cat1switzerland

I don't have any of the answers, the ladies who answered are much more qualified. I will think about you on Friday, though, and I KNOW you'll do great. You sound like a smart, no nonsense lady, and that will definitely help you go through this.

Take care,
And a big hug from Switzerland,
Cathy

cat1switzerland

I don't have any of the answers, the ladies who answered are much more qualified. I will think about you on Friday, though, and I KNOW you'll do great. You sound like a smart, no nonsense lady, and that will definitely help you go through this.

Take care,
And a big hug from Switzerland,
Cathy

gayleyr

cindyclay said:

I had a double mastectomy in September. My surgeon removed 16 lymph nodes from right side and 12 from left. I had one positive node on the right side. I too am very concerned about blood pressure, blood work, etc. I just have them either use a leg cuff or check blood pressure on my left arm. During chemo, when they took blood out, they used my port. Now I just have them use my left arm, since they didn't remove as many lymph nodes. Is your surgery this Friday? Are you having reconstruction?

Thanks for the message. Hopefully I will not need lymph nodes removed on the right side. Surgery is this Friday at 9:00 EDT. Reconstruction is planned but must wait until following radiation. I have already had chemo to shrink the tumor initially. Keep in touch.

gayleyr

nancys said:

Gayle, I just asked this question today of my radiation Oncology nurse as she took my blood pressure. She said it is possible to take the bp from the ankle but she just goes ahead and uses the arm, because she did not think it would do that much harm.....Think I will ask my doctor about that answer..I will say a prayer for you on Friday morning and ask GOD to put his loving arms around you and get you through this surgery with flying colors. Love to you, Nancy

Nancy - thanks for the message. My faith has brought me through this. I have an awesome prayer team supporting me as well as my family and people like you that I may never meet but I know God is listening to. Keep in touch. Gayle

gayleyr

cherdaetwyler said:

Hi,
I had a double masectomy in Dec. Four weeks after surgery I had a Bard port implanted in the skin just below my collarbone (what they call a sub-clavicular implant). It has a tube that goes directly into the vein. When blood work is needed or for my chemo, they use a special short needle called a Huber needle to access the blood vessels. (when it is not in use the entire port and its accompanying tube are filled with a heparin saline solution that keeps clots from occuring there)
I PLAN to keep this port for the rest of my life or if my life exceeds the ports lifetime to have another on implanted.

Most doctors do the implant surgery unter a local anesthetic.

The few times that I have had things like the heart wall motion scan (prior to and after my Adriamycin chemotherapy) which have shots or intravenous medications which cannot be administered through my port, I have had the IV or the shot into the veins of my feet. You have to have a scrip from the doctor ordering the test saying that you may have the IV or shot in a vein of the foot.

My port is a great thing. Unlike the port that is a long term IV this is designed for people such as ourselves who have bilateral lymph node removal and is designed for long term use.

The insertion of the Huber needle is about as painful as an ordinary needle prick or the lancet for a blood count, but it really is a fantastic thing to keep down the chances of lymphedema. (I have only had minor swelling on a few occasions but my doctor ordered compression sleeves and gloves for both arms. I don;t usually need them when I get enough exercise, but if swelling begins it can get things back to normal in a couple hours.)

Check with your surgeon or your oncologist to see about getting a port implant.

Oh yeah, Blood Pressure readings are taken on your thigh with a special thigh cuff.
My readings are always higher than they were before burt that may be due to the fact that stress has been high each time I have been in a doctors office when they did blood pressure (or in the hospital out patient surgery before the port implant)

Just don't allow anyone to convince you that they can do a blood pressure reading on your arm!!! Perhaps several years after surgery if you have had no lymphedema it is OK but everyone I know who has allowed the arms to be used for BP has then developed a swelling problem shortly afterwards.

There are enough of us out there that there should be some special booklets available for those who need them, but they are not there.

Perhaps I shall write a list of special suggestions and send it to the cancer society.

feel free to write if you have any other questions or send me a private email if you need to. I love to answer any questions I can.
You will be in my prayers as you go for your surgery.
Cher

Cher - your note was full of useful info - thanks. I have a port that is being removed -they had used it for chemo - but it will interfere with the radiation. I'll check into the type of port you describe - thanks for the warning about B.P. and info on the compression sleeve. I appreciate your prayers as well. Gayle

sharon_buck

With my cancer it was on the right side. I had invasive ductal carsinoma and lobular Ichose to have a double mast. with reconstruction using tissue expanders. when they do my blood preasure they use the left side not sure if you have cancer on both sides?I seem to do fine with this.

confused

sharon_buck said:

With my cancer it was on the right side. I had invasive ductal carsinoma and lobular Ichose to have a double mast. with reconstruction using tissue expanders. when they do my blood preasure they use the left side not sure if you have cancer on both sides?I seem to do fine with this.

My mom has had both breasts removed.The right breast 6 yrs ago and the drs. removed all of the lymphnodes on that side. Since that surgery,she has lymphadema(sp) on that side, and never gets her blood pressure or blood drawn on that side.
In feb. 2001 she had to have the left breast removed, and this time they only took a few of the lymphnodes out. Her surgeon says its ok to have her blood pressure taken in that arm and to have blood drawn too. However,my mom does have a port for her chemo therapy.
My thoughts are with you and your family!
Diane