Dis Breast Cancer Survivors Part IV - GAGWTA

[lovethattink]

I'll try to help as much as I can. To clarify when DW had lumpectomy before she went in to hospital, they called the oncologist that she was to see after surgery and he suggested they take a lymph node to check. Her lymph node ended up being about 3 inches below the arm, cut about 3 long. I think there was no lifting over 5 lbs for 7 days, her arm was sore, bruised below the cut, some things she couldn't do like lift her arm above her shoulder, it's still a little sore after 3 weeks and to be expected. Biggest problem was, her bra hit right at the cut. Did without one until the second surgery to take more tissue and surgeon wants her wearing a sports bra for 2 weeks, 24 hours a day for support. I helping her put that on because of the arm. You are going to need a little help for some things but sounds like you have good support. DW had no drain for anything but they said something about water retaining around the lymph node, don't remember exactly why. Wanted her to do exercises like walking a spider up the wall. Her bicep kinda hurts now, she goes in for a check up on her incision Thursday so is going to ask about that. Can I get a little personal? If you don't want to answer, no problem, when they did your lumpectomy, did they stitch you or glue you? They did some internal dissolving stitches on DW and then glued the incision shut. After 7 days she can start peeling off the glue. Weird to see the incision just glued shut, it looks worse with the glue on it than it does when the glue comes off. Hope this helped you little, trying to think of anything the DW couldn't do. Again, hugs to you!

Yes. That helps. Thanks.

Yep, inside stitches and glue. Though I was told not to touch the glue to let it come off on it's own.

 

[Pea-n-Me]

Yes, I think they primarily put drains in after mastectomy, not lumpectomy. When I had my lumpectomy, though, I had to go have the fluid drained every couple of days. It felt like a banana under my arm until they drained it, but it wasn't painful, persay. Just more of an annoyance than anything. When they take out the nodes it leaves a space, and fluid is happy to jump in and fills that space. This all resolves after a week or so.

 

[Pea-n-Me]

Stopping in to say hello to all you old friends, and newer posters here.
It's been awhile since I checked in.
Been wondering about Laurie/snappy in Baton Rouge, hope all is well there.
Thinking of you all often, and wishing you all well, always.
Things are generally good with me...my baby (who just turned 3o ) had her first baby at the end of July, been quite pleasantly preoccupied with that as she is a 2 1/2 hour drive from me and I miss them all so much in between visits!!

Aww, so good to see you, Ann! I was thinking about you - I thought I saw your DD post that she had a baby, wasn't sure it was her, I think she changed her screen name a bit?

Welcome to all the new posters. But sorry you have to be here. You have found a great place here. The ladies are so encouraging and I admire their strength
and courage.

Linda - Happy Birthday!!

smiley - your trip sounds wonderful

Ann - glad to see you and congrats on the new grandbaby. Hope Avery is doing well too.

Friday I am getting a sonogram of my neck. I had the blood test the other week and I see my endo on Tues. I think. Its also thyroid cancer awareness month, so its perfect timing, lol!

My dh is traveling a lot as usual. I planned our food and wine trip for oct 18-25 and now he says he has a big project to work on and I should just go with ds3. I don't know about that and we will see what happens. At least we didnt get the airline tickets yet or book the hotel. I guess we could try and get the Dolphin if they have the nurse discount for ds. Its all up in the air right now, sigh.

I got to meet ds2 girlfriend. She seems like she would be a nice dil but ds says they havent talked about that yet. It would be nice to not be the only girl around here for a change, lol!

The other week end dh and I were rear ended. Its been such a mess. We found out the boy who hit us actually went to grade school with ds2. His dad even came over the house to see how we were. I thought that was strange. I had dh talk to him on the porch and he said he didnt remember ds2 at first, gheesh. Well the other ins. company keeps putting us off and stalling but we are not going through our ins. co. We got them not too long ago and I am sure if we file a claim with them they will drop us like a hot potato. They said the damage is $3,400!! At least the van is driveable. We shall see what happens, I see lots of stalling in the future. Such is life.

I am getting the butterflies again. It always happens before I go to the dr. Whats inn the back of my mind comes to the front sigh.

GAGWTA. Thinking of you all.

Thank you! Glad you checked in, I was thinking this morning we hadn't seen you in a while, either. A trip to the Dolphin sounds really nice right about now!

 

[lovethattink]

Yes, I think they primarily put drains in after mastectomy, not lumpectomy. When I had my lumpectomy, though, I had to go have the fluid drained every couple of days. It felt like a banana under my arm until they drained it, but it wasn't painful, persay. Just more of an annoyance than anything. When they take out the nodes it leaves a space, and fluid is happy to jump in and fills that space. This all resolves after a week or so.

Thanks for the heads up! Haven't needed lumpectomy area drained. Glad to hear that resolves on its own after lymph nodes. The surgeon expected to take out 4 to 6 nodes.

 

[Dan Murphy]

my baby (who just turned 3o ) had her first baby at the end of July,

Congratulations, Ann!! That is wonderful. And congratulations to Megster also (I guess that is only proper, her being mom now, LOL). Wonderful news.

The other week end dh and I were rear ended.

What a bummer, Mary. Hope it gets resolved completely and quickly.

 

[Pea-n-Me]

I spoke with Laurie/Snappy, and she is doing ok, just really busy with work AND she thinks she lost the subscription to this thread, lol. Things are ok in her direct neighborhood, also - the rest of her area, not so much.

She'll stop by when she can!

 

[lovethattink]

I spoke with Laurie/Snappy, and she is doing ok, just really busy with work AND she thinks she lost the subscription to this thread, lol. Things are ok in her direct neighborhood, also - the rest of her area, not so much.

She'll stop by when she can!

Glad she's ok.

If she clicks "watched threads" this thread should show up there.

 

[rajak73]

Haven't needed lumpectomy area drained. Glad to hear that resolves on its own after lymph nodes. The surgeon expected to take out 4 to 6 nodes.

I think she was talking about the node area filling with fluid after removal. If I'm wrong Pea-n-me can correct. Just a guess but I think they are going to take that many nodes because they are not sure which one is the first, etc.

When they take out the nodes it leaves a space, and fluid is happy to jump in and fills that space.

Thank you, I knew the doctor said something about fluid, I just couldn't remember what it was. DW never had any fluid in her node space, but they only took the first sentinel node.

 

[rajak73]

Yep, inside stitches and glue. Though I was told not to touch the glue to let it come off on it's own

Told DW glue would start to come off after 7 to 10 days, it's funny because the incision looks a lot better after glue comes off.

 

[Pea-n-Me]

I think she was talking about the node area filling with fluid after removal. If I'm wrong Pea-n-me can correct. Just a guess but I think they are going to take that many nodes because they are not sure which one is the first, etc.

Thank you, I knew the doctor said something about fluid, I just couldn't remember what it was. DW never had any fluid in her node space, but they only took the first sentinel node.

Yes, thank you. Reading back, I can see how my wording might have been confusing. I meant no drains after lumpectomy, usually, but fluid can build up in axillary area after node removal. I had sentinel node biopsy as well. They identify the sentinel node and take it out. A pathologist right then and there checks it out to see if there are cancer cells, and if there are, they take out more. In my case, the first was positive, so they took out eight, total.

 

[rajak73]

Yes, thank you. Reading back, I can see how my wording might have been confusing. I meant no drains after lumpectomy, usually, but fluid can build up in axillary area after node removal. I had sentinel node biopsy as well. They identify the sentinel node and take it out. A pathologist right then and there checks it out to see if there are cancer cells, and if there are, they take out more. In my case, the first was positive, so they took out eight, total.

My DW sentinel node was negative so that's the only one they took. They said they would start with that one, check and if it showed positive would take the next, etc. Just had her checkup after the surgery last Thursday today and everything is good, now just to see about radiation at end of month.

 

[JamesMom]

Thanks for the welcome, everyone. BTW - my boys in the picture are now 11 and 14. Still difficult for kids to deal with, but at least they are old enough to understand. I am always coming with tag lines for cancer progress. Like when I was losing my hair this week, my youngest was getting a little freaked out. So I just said, "Well, if this is what chemo is doing to my hair, imagine what it is doing to the cancer!" That helps them gain perspective. They have been handling it well.

 

[Pea-n-Me]

Thanks for the welcome, everyone. BTW - my boys in the picture are now 11 and 14. Still difficult for kids to deal with, but at least they are old enough to understand. I am always coming with tag lines for cancer progress. Like when I was losing my hair this week, my youngest was getting a little freaked out. So I just said, "Well, if this is what chemo is doing to my hair, imagine what it is doing to the cancer!" That helps them gain perspective. They have been handling it well.

I remembered your boys from your signature when I saw them. So cute! I'm glad they are handling it well.

 

[Pea-n-Me]

Just remembered something else after I posted. The first day I came home with my wig after having my head shaved - I'd told my kids, who were 5, just turning 6 at the time, what would be happening with my hair. DS said he wanted to see me without my wig. I was hesitant, and sort of embarrassed. But I took it off. Without so much as batting an eye, he said, "You look beautiful, Mom". It is still one of the memories that warms my heart most when it comes to my son.

 

[JamesMom]

Pea-n-Me, we joined the DIS at about the same time (a month apart!), but you seem to be a much more prolific poster than me What a sweet memory with your son.

 

[lovethattink]

My Oncotype DX score was low enough to probably not need chemo! But chemo now hinges on the lymph node biopsy and mapping that to be done. If they look good and negative, it will be radiation instead! I'm still scheduled for lymph nodes and possible chemo port.

Question about radiation. Will I need to stay away from people or people need to stay away from me? When my husband's aunt had radiation on her thyroid years ago, she couldn't share plates or utensils with the rest of the family. Is it still like that?

My son wants to audition for another musical and I'm his mode of transportation. Do you think I'll feel up to driving him 5 days a week, 30 minutes each way after radiation?

 

[The Mystery Machine]

Thank you, I knew the doctor said something about fluid, I just couldn't remember what it was. DW never had any fluid in her node space, but they only took the first sentinel node.

I am jumping in because while Pea is well intentioned, it is not true for everyone. Let me fill in the gap.

Once you have lymph nodes removed you are now at Stage 0 Lymphedema.

I am an advocate for seeing a Lymphedema PT BEFORE surgery to get measured. It is easy AND it is your original baseline. Once you have surgery that is lost forever. (does not matter the cancer)

It is a BIG deal because some doctors do not believe in lymphedema. AND YES it is true. They think it is large limbs. Well guess what people have lymphedema without large limbs. I am living proof.

The doctors poo poo this or ignore it. Some doctors are coming around though and including getting measured before surgery & treatment.

Bottom line, you do not know what radiation or chemo will do to you. I had left lump, 33rads, this yr.

I have swelling in my whole body. MY WHOLE BODY. Guess what? Doctors do not know what it is AND trying to get a doctor to help me for months is impossible. I have to go to the Mayo Clinic or somewhere else.

My life as I know it is changed forever.

 

[Pea-n-Me]

I am jumping in because while Pea is well intentioned, it is not true for everyone. Let me fill in the gap.

Once you have lymph nodes removed you are now at Stage 0 Lymphedema.

I am an advocate for seeing a Lymphedema PT BEFORE surgery to get measured. It is easy AND it is your original baseline. Once you have surgery that is lost forever. (does not matter the cancer)

It is a BIG deal because some doctors do not believe in lymphedema. AND YES it is true. They think it is large limbs. Well guess what people have lymphedema without large limbs. I am living proof.

The doctors poo poo this or ignore it. Some doctors are coming around though and including getting measured before surgery & treatment.

Bottom line, you do not know what radiation or chemo will do to you. I had left lump, 33rads, this yr.

I have swelling in my whole body. MY WHOLE BODY. Guess what? Doctors do not know what it is AND trying to get a doctor to help me for months is impossible. I have to go to the Mayo Clinic or somewhere else.

My life as I know it is changed forever.

As the originator of this thread and a licensed health professional, it's always been very important to me that information contained here is accurate, because I know that there are lots of people reading besides those who are posting.

When there is something important I often back up my statements with a link with verifiable information, so the reader can know for sure that the information is accurate, and there's a basis for further reading, etc.

In the case of the question above, I didn't do that because it's a general principle of surgery that when something is removed, fluid will fill that space initially until it is gradually reabsorbed over time. I shared my own experience with fluid build up under my arm in the post op period as well. I've posted the same thing many times over the years with factual back up so I'm very confident of the information.

But since it's being questioned, here is a link that says essentially the same thing directly from a breast surgeon.

http://www.melbournebreastcancersurgery.com.au/after-your-breast-surgery.html

"It is common for women who have had some or all of the lymph glands removed from under the arm to develop a collection of clear, straw coloured fluid under the wound called a “seroma”. You may experience fullness under the arm, which is often described as like having a ball fixed in the armpit. If you have had a mastectomy, similar fluid can also build up on the chest wall. As with haematoma, this fluid is re-absorbed by the body over time but if it causes discomfort, as it is watery in nature, it can be easily “drawn off or drained” (aspirated) using a small needle and syringe. This is a very simple and almost painless procedure. In some cases, the fluid may collect again on several occasions requiring repeated aspiration."

This seems to be what commonly happens with many people after sentinel node dissection.

I think it would be helpful for me, and I'm sure others, if you'd share some of the resources your using for your lymphedema recommendations, so we, too, can learn more about it. It does seem as if your situation is very unusual. (I've cared for many people over the years with severe cases of lymphedema in limbs, and I've had hundreds of patients with anasarca related to heart disease.)

In your readings, have you come across many others who've had whole body edema related to radiation?

 

[lovethattink]

I am jumping in because while Pea is well intentioned, it is not true for everyone. Let me fill in the gap.

Once you have lymph nodes removed you are now at Stage 0 Lymphedema.

I am an advocate for seeing a Lymphedema PT BEFORE surgery to get measured. It is easy AND it is your original baseline. Once you have surgery that is lost forever. (does not matter the cancer)

It is a BIG deal because some doctors do not believe in lymphedema. AND YES it is true. They think it is large limbs. Well guess what people have lymphedema without large limbs. I am living proof.

The doctors poo poo this or ignore it. Some doctors are coming around though and including getting measured before surgery & treatment.

Bottom line, you do not know what radiation or chemo will do to you. I had left lump, 33rads, this yr.

I have swelling in my whole body. MY WHOLE BODY. Guess what? Doctors do not know what it is AND trying to get a doctor to help me for months is impossible. I have to go to the Mayo Clinic or somewhere else.

My life as I know it is changed forever.

I'm so sorry. I hope it's not cellulitis?

Makes me more nervous for the surgery.

 

[Pea-n-Me]

I'm so sorry. I hope it's not cellulitis?

Makes me more nervous for the surgery.

TMM's difficult experience seems to be very unusual, if that makes you feel any better.