Survivor needs new information

Here_I_go_again

Hello to the Sisterhood. I am a thankful, 7 year survivor of 3rd stage Ovarian Cancer but was just diagnosed with multi-focal IDC and find myself doing some homework once again. Because of my history of Ovarian and with three tumors in the left breast my best odds are with a double mastectomy. I have been doing a lot of reading in preparation for my surgery on Sept. 8th but wondered if any of you could help me understand what to expect post-surgery??? I am inspired by all of your blogs that radiate hope, laughter and togetherness. I have a firm belief in God and have experieced His Grace and Mercy. I could not have made it through the first time without Him.

Kristin N

Welcome ☻
I had a lumpectomy, so, I can't answer your post-surgery questions, but, someone on here will! Good luck!

Kristin ♥

Here_I_go_again

Kristin N said:

Welcome ☻
I had a lumpectomy, so, I can't answer your post-surgery questions, but, someone on here will! Good luck!

Kristin ♥

Thanks Kristin
Absolutely love your kitty.

New Flower

Mastectomy
I am very sorry that you are having cancer again. I had radical mastectomy for my left breast with immediate reconstruction. I have no regrets that I went for mastectomy. Recovery has not been easy and depends on number of lymph notes being removed. You will need a lot of help after the surgery and have to cope with pain. I would suggest to discus the double with your oncologist and breast surgeon, before making final decisions.
You are a fighter and a very strong person. I wish you courage and get well soon.
New Flower

Akiss4me

Warm Welcome
Hello, just wanted to welcome you as well. There are many here who have gone through mastectomy and will post soon. Please come here anytime and for any reason. We will do our best to walk with you in your journey. ♥ Pammy

prv

Akiss4me said:

Warm Welcome
Hello, just wanted to welcome you as well. There are many here who have gone through mastectomy and will post soon. Please come here anytime and for any reason. We will do our best to walk with you in your journey. ♥ Pammy

bilateral mastectomies
I was diagnosed this June with invasive lobular carcinoma. I underwent bilateral mastectomies. A radical with axillary node dissection on the left (tumor side) and simle mastectomy on the right (prophilactic, as my type of cancer has a 10 to 20% chance of being on both sides. They did find a small focus of in situ cancer on the right). I did not have a great deal of trouble following surgery. The pain was not bad and I think I just took motrin. I came home with JP drains on both sides. And a visiting nurse came every day to check in on me and help with the drains (I live alone with my seven year old daughter). They were removed in about a week. I had some trouble with range of motion on my left side (lymph node side) and also had some cording (check internet for cording or axillary web syndrome). I kept messaging the areas and it got alot better. I also had some fluid built up but it goes away with time. Right now I am undergoing chemo (just did #3 of A/c) and also going to physical therapy to increased my range of motion and prevent lymphedema. This was all very doable. Not the most pleasant time of my life but I am grateful the cancer is out and I'm still alive and kicking. I'm sure you will do just fine!

Marcia527

prv said:

bilateral mastectomies
I was diagnosed this June with invasive lobular carcinoma. I underwent bilateral mastectomies. A radical with axillary node dissection on the left (tumor side) and simle mastectomy on the right (prophilactic, as my type of cancer has a 10 to 20% chance of being on both sides. They did find a small focus of in situ cancer on the right). I did not have a great deal of trouble following surgery. The pain was not bad and I think I just took motrin. I came home with JP drains on both sides. And a visiting nurse came every day to check in on me and help with the drains (I live alone with my seven year old daughter). They were removed in about a week. I had some trouble with range of motion on my left side (lymph node side) and also had some cording (check internet for cording or axillary web syndrome). I kept messaging the areas and it got alot better. I also had some fluid built up but it goes away with time. Right now I am undergoing chemo (just did #3 of A/c) and also going to physical therapy to increased my range of motion and prevent lymphedema. This was all very doable. Not the most pleasant time of my life but I am grateful the cancer is out and I'm still alive and kicking. I'm sure you will do just fine!

I had a right modified
I had a right modified radical mastectomy also lost 15 lymph nodes. I also had trouble with range of motion on that side. I ended up at physical therapy who also was a lymphedema specialist. I didn't have lymphedema but they showed me self massage to help prevent it.

Here_I_go_again

New Flower said:

Mastectomy
I am very sorry that you are having cancer again. I had radical mastectomy for my left breast with immediate reconstruction. I have no regrets that I went for mastectomy. Recovery has not been easy and depends on number of lymph notes being removed. You will need a lot of help after the surgery and have to cope with pain. I would suggest to discus the double with your oncologist and breast surgeon, before making final decisions.
You are a fighter and a very strong person. I wish you courage and get well soon.
New Flower

Thank you New Flower
Thank you New Flower for your reply. I am not bothering with the reconstruction right now but leaving the option open for later. I'm 61 and may not bother with it at all but luckily I don't have to make the decision right now. I have one of my sister's and her husband coming to stay with us as my husband is undergoing his own medical treatments (boy are we a pair)so my brother-in-law can run him to doctors while my sister tends to me. I am a fighter that's why I am having a double because my odds of reoccurance in the right (if I left it) was too great for me to risk.

I am sorry you had such a rough time. You hang in there as well and I hope your recovery goes smoother from now on.

Take care,

Kathy

Here_I_go_again

prv said:

bilateral mastectomies
I was diagnosed this June with invasive lobular carcinoma. I underwent bilateral mastectomies. A radical with axillary node dissection on the left (tumor side) and simle mastectomy on the right (prophilactic, as my type of cancer has a 10 to 20% chance of being on both sides. They did find a small focus of in situ cancer on the right). I did not have a great deal of trouble following surgery. The pain was not bad and I think I just took motrin. I came home with JP drains on both sides. And a visiting nurse came every day to check in on me and help with the drains (I live alone with my seven year old daughter). They were removed in about a week. I had some trouble with range of motion on my left side (lymph node side) and also had some cording (check internet for cording or axillary web syndrome). I kept messaging the areas and it got alot better. I also had some fluid built up but it goes away with time. Right now I am undergoing chemo (just did #3 of A/c) and also going to physical therapy to increased my range of motion and prevent lymphedema. This was all very doable. Not the most pleasant time of my life but I am grateful the cancer is out and I'm still alive and kicking. I'm sure you will do just fine!

Great Information
Hi there,

Thank you for all the information. My left is also the tumor side. My surgeon will be doing a sentinel node extraction for testing to determine if it has spread so I won't know anything until I wake up. We are praying for a clean sentinel node but will deal with whatever we have to. I am having the double because my odds (with prior Ovarian) for it reoccuring in the right was not acceptable. I was glad to hear that your pain level was not too bad - I know everyone is different and there are a million scenarios but its good to hear anyway. I will look up "cording" as I have not heard of that yet in my research. Good luck with your Chemo and you hang in there - I like "alive and kicking" :-).

Take care,

Kathy

mlmjt1

Here_I_go_again said:

Great Information
Hi there,

Thank you for all the information. My left is also the tumor side. My surgeon will be doing a sentinel node extraction for testing to determine if it has spread so I won't know anything until I wake up. We are praying for a clean sentinel node but will deal with whatever we have to. I am having the double because my odds (with prior Ovarian) for it reoccuring in the right was not acceptable. I was glad to hear that your pain level was not too bad - I know everyone is different and there are a million scenarios but its good to hear anyway. I will look up "cording" as I have not heard of that yet in my research. Good luck with your Chemo and you hang in there - I like "alive and kicking" :-).

Take care,

Kathy

HI Kathy
I had bilateral mastectomies in may with 21 nodes removed all of which were negative. The sentinel node was positive so I am currently in chemo about 1/2 way thru.

I had fibrocystic breast disease with multiple biopsies over the years so knew that if I was ever diagnosed with cancer both would go. I dont regret it at all, but I did have complications with the cancer side and had to have the tissue expander removed on that side. Reconstruction will just have to come later. I too saw an occupational therapist who taught me lymphedema massage so I do it myself and generally managing it ok. I have almost full range of motion on that side.

Hang in there and remember that we are here for you. I dont know how many meltdowns I have had and there is always someone who is there to encourage me or give me advise or tell a joke or two.

Lots of hugs
Linda T

Here_I_go_again

mlmjt1 said:

HI Kathy
I had bilateral mastectomies in may with 21 nodes removed all of which were negative. The sentinel node was positive so I am currently in chemo about 1/2 way thru.

I had fibrocystic breast disease with multiple biopsies over the years so knew that if I was ever diagnosed with cancer both would go. I dont regret it at all, but I did have complications with the cancer side and had to have the tissue expander removed on that side. Reconstruction will just have to come later. I too saw an occupational therapist who taught me lymphedema massage so I do it myself and generally managing it ok. I have almost full range of motion on that side.

Hang in there and remember that we are here for you. I dont know how many meltdowns I have had and there is always someone who is there to encourage me or give me advise or tell a joke or two.

Lots of hugs
Linda T

Hugs back at you
Hi Linda,

Thank you so much for the reply. I am so glad your other nodes were ok and I will be praying for you that the chemo knocks the s!*& out of the remaining cancer cells. Linda, with the double, how long before I can somewhat use my arms without too much pain following surgery?

Good for you on your range of motion back to almost normal. Hang in there and keep a positive attitude - We can beat this!

Hugs,

Kathy

VickiSam

Thank you everyone for the very valuable information
Chemo first in my case, then bi lateral first of the year.

lolad

VickiSam said:

Thank you everyone for the very valuable information
Chemo first in my case, then bi lateral first of the year.

Kathy
Wanted to welcome you and tell you that im sorry for the reason you have to be here. I will tell you that the site is wonderful though and you will get alot out of it. I was diagnosed in April and had a double mastectomy in june with tissue expanders placed at the same time. Im going thru my "fills" right now and also chemo. Making the decission on what to do is very hard i know. Just try to listen to your gut and not what others tell you what to do. You will know when you have made the right choice. I hope it all goes well, keep posting and let us know how you are. Take care

laura

cats_toy

welcome again
sounds like you are preparing thoroughly for this next journey. Let us know how it goes for you. I only had a partial mastectomy, so I would not be able to help with info on your post surgery.
Take care
Cat

dbs1673

Expectations
First, strength and well wishes to you! I also had bi-lat mastectomy but I did have expanders put in at that time. Perhaps some of what I experienced was due to that part of the procedure. That being said there are some things I may be able to offer in preparation of your surgery. First, I recommend plenty of button down shirts as it will be uncomfortable to raise your arms to pull a shirt down. Second, be prepared for drainage tubes. I had 2 on each side and they get like little octopuses sometimes. I had a small pouch that was around my waist to keep the drainage bulbs in place. When I showered I used a dish towel around my neck and pinned the tubes up onto the towel to keep out of the way. For the first few days, sleeping in a recliner was the most comfortable position. Small pillows under the arms and ice packs were some of my best friends. Above all, let those who love you do for you. Please let us know how you are doing.

dawn

Alexis F

dbs1673 said:

Expectations
First, strength and well wishes to you! I also had bi-lat mastectomy but I did have expanders put in at that time. Perhaps some of what I experienced was due to that part of the procedure. That being said there are some things I may be able to offer in preparation of your surgery. First, I recommend plenty of button down shirts as it will be uncomfortable to raise your arms to pull a shirt down. Second, be prepared for drainage tubes. I had 2 on each side and they get like little octopuses sometimes. I had a small pouch that was around my waist to keep the drainage bulbs in place. When I showered I used a dish towel around my neck and pinned the tubes up onto the towel to keep out of the way. For the first few days, sleeping in a recliner was the most comfortable position. Small pillows under the arms and ice packs were some of my best friends. Above all, let those who love you do for you. Please let us know how you are doing.

dawn

Hi there! I am just adding
Hi there! I am just adding my best wishes to you too and hope to see you posting again and letting us know how you are doing.

Lex♥

susie09

Hey! I would like to
Hey! I would like to welcome you to a great site full of bc survivors. We are all here to help you and support you. I hope you get all of your questions answered.

♠♣ Susie ♠♣

jnl

Marcia527 said:

I had a right modified
I had a right modified radical mastectomy also lost 15 lymph nodes. I also had trouble with range of motion on that side. I ended up at physical therapy who also was a lymphedema specialist. I didn't have lymphedema but they showed me self massage to help prevent it.

Hi and welcome! Hope you
Hi and welcome! Hope you find the site helpful! I know I do!

Leeza