Dis Breast Cancer Survivors Part IV - GAGWTA

[lovethattink]

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

That's good.

After the lumpectomy I didn't have any swelling. But did get an infection last week. I'm on antibiotics.

 

[Pea-n-Me]

That's good.

After the lumpectomy I didn't have any swelling. But did get an infection last week. I'm on antibiotics.

I had that happen, too.

 

[The Mystery Machine]

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?

Well Pea since I am in an difficult position, I have been enlightened to the dark side of after cancer treatment in this particular area.

NO DOCTOR wants to diagnose me and some doctor's LAUGH at the lymphedema PT's ideas. They call it edema instead of lymphedema. How about I have BOTH? It is just my left limb is not large but it is enlarged.

Swelling is a place of darkness, a gap, in cancer treatment and frankly in general as I have found out. That is why people have large limbs. They do not get proper medical help because doctors do not know how to treat it.

My information is from the Lymph PT's themselves who work with people with lymphedema. THEY BEG the doctors to change their ways and start measuring people. It is a simple thing.

This is new medical stuff folks.

I wish this did not happen to me. My best guess is that 2 weeks into rads it started. I had no idea.

 

[Dancind]

Hello everyone. Sorry to see we have new members, just read several pages and not sure who I'm answering, but a lumpectomy is a piece of cake to recover from. Especially compared to a mastectomy, I've had both.

Mary Ann, sorry about your F&W trip. And will keep fingers crossed that you will have a nice DIL in the near future.

We just got back from a week in Napa, our version of a F&W trip. DD met us in Oakland and we drove up, last week at our time share since I surrendered it earlier this year. She discovered that she likes wine in the last year, and I mean the good stuff. So that was fun.

Now I have to cook again. At least I will eat less maybe!

 

[Pea-n-Me]

Well Pea since I am in an difficult position, I have been enlightened to the dark side of after cancer treatment in this particular area.

NO DOCTOR wants to diagnose me and some doctor's LAUGH at the lymphedema PT's ideas. They call it edema instead of lymphedema. How about I have BOTH? It is just my left limb is not large but it is enlarged.

Swelling is a place of darkness, a gap, in cancer treatment and frankly in general as I have found out. That is why people have large limbs. They do not get proper medical help because doctors do not know how to treat it.

My information is from the Lymph PT's themselves who work with people with lymphedema. THEY BEG the doctors to change their ways and start measuring people. It is a simple thing.

This is new medical stuff folks.

I wish this did not happen to me. My best guess is that 2 weeks into rads it started. I had no idea.

When I first became a nurse in the 80s it was fairly common to see older ladies with "elephant arms" from lymphedema. I almost never see them now, so there must've been some improvements over the years. We've certainly heard about some mild cases here over the years, including my own.

Physical Therapists have their own body of knowledge and research, etc. I'm curious to know if they've done any studies on this issue - this would give credence to their findings.

At any rate, it must be very difficult for you being in this dark place and feeling like you're not getting help and support from your medical teams. It's hard for me to comment more than that without seeing you and reading your medical record, etc. I can't even envision the problem, really. I know you'll keep plugging away in your search for answers. I'm sure you'll be able to help others once you figure it out. What does your PT think happened?

 

[Olallamom]

I haven't posted in a very long time. Just wanted to share I officially hit the 5 year survivor mark yesterday. I remember feeling like this mark was a lifetime away when I was diagnosed. All I can say is that I am so very thankful.

 

[snappy]

Thanks Pea-n-me for reaching out to me recently, and updating the thread about me.

Congrats Ann, on your grandbaby. Happy days!

I am sorry to see more posters here dealing with cancer and its after effects, yet glad you found this wonderful thread.

I am sure I have missed a lot, but for what it is worth, my first biopsy circa 2004 was the stereotactic core needle type. The diagnostic mammogram had showed more than one quadrant of DCIS, so the core needle biopsy seemed to go on and on with many samples taken. I think my case presented a challenge to the radiologist as one area was right under the skin AND right in the center. I remember lots of discussion that stressed me out but I tried to tune out by listening to the soothing music that they had playing and enjoying the mini massage that seemed to be the sole task one nurse was assigned during the duration.

In all the samples, there was lots of DCIS but only one minuscule area of invasive cancer. A month later when I had the mastectomy, the pathologist did not find further invasive tissue, only the DCIS, so that one little area found during the biopsy was it. I think the surgeon expected to find more invasive tissue as he removed 16 nodes but they were clear. So I did not need chemo or radiation.

I did have drains, for a month or so after the surgery, and I was glad as there was a lot of fluid that needed to come out. My recollection is that I read that women with large breasts tend to have more fluid, but that may not be medically correct.

I have been been lucky to only have mild swelling over the years, even with so many nodes removed. I did see a lymphedema specialist after surgery once, as I participated in a study, I think. My affected side measured a tiny bit larger than the unaffected. I continue to be as careful as possible with cuts, burns, bug bites, etc with the arm and fingers of my left hand. My impression is that I am under lifetime risk of developing lymphedema. I was given a rather extensive booklet from the hospital when I was released. Here, because everyone eats so much seafood, there was even a reference to avoid peeling shrimp, crabs, and crawfish due to the possibility of bacteria entering the skin if you are stuck with a sharp edge of a claw or body of a crab, etc.

I remain very happy with my results all these years later (12 years since diagnosis). But time marches on. Now I need cataract surgery both eyes, and have pretty advanced osteoarthritis in the basal thumb joint of both hands accompanied by carpal tunnel side effect of numbness. It stinks but I am taking measures (wearing braces on the hand, and surgery on the eyes) to make sure this aging crap does not slow me down.

I started working part time for the owners of a wonderful business that helped my mom downsize and move into her independent living unit at a very nice senior living campus here. I love doing it and want to continue. Thinking of giving up my accounting gig next year. The CEO of the non-profit i work for retired at 72 this past year, and we have a new interim CEO who is upending everything, some things that don't need changing, or at least not in the way she is contemplating. I haven't given notice yet. I'll wait and see this fiscal and calendar year through. I don't want to put funding in jeopardy.

Otherwise, everything is doing well.

I'll try to keep up with the thread a bit better. Having two jobs has proven challenging, but the good thing about the senior moving job is that it's flexible in that I can take or not take any particular job. Every job should be like that lol.

GAGWTA everyone!

 

[PlutoPony]

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..

Coming out of lurkdom, TMM I'm so sorry you're dealing with this
I am a big proponent of a PT who has specific training in lymphedema. There aren't a lot of them around, often they seem to be found more in the hospital setting (but accept patients not hospitalized). Because I had had a mastectomy, I was given a walker instead of crutches when my breast cancer metastasized to my femur. Thus far I've been able to avoid long term lymphedema in my arm but did run into significant swelling of the leg that broke. Some docs term it a form of lymphedema, and it did initially involve some radiation recall (reaction of chemo and radiation making the skin looked burned). With the help of a fantastic PT, we were able to get the leg swelling stabilized but it took a lot of work and I'm fortunate I found a PT who was knowledgeable about this. She (the PT) honestly saved my quality of life. While I am generally confident of the abilities of my oncologist and orthopedic surgeon, they really don't have a lot to offer in lymphedema knowledge/solutions. I do have some permanent swelling (it's not noticeable if you aren't looking for it) that results in limited range of motion in the hip and knee because of it. BUT I can get around walking on my own, only occasionally using a cane when I'm tired or going to be on uneven ground. If you do end up with anything you suspect could be lymphedema, jump on it right away and find people who have experience with it.... you may have to cast a wide net.

 

[PlutoPony]

O DOCTOR wants to diagnose me and some doctor's LAUGH at the lymphedema PT's ideas. They call it edema instead of lymphedema. How about I have BOTH?.

YES! Totally agree

My best guess is that 2 weeks into rads it started.

I had 2 weeks of radiation on the leg (that's all that was needed), then went immediately into chemo. The swelling/radiation recall happened 4 months into chemo, so 4 months after radiation started. Took a bit for all of us - doc and PT - to realize this wasn't a temporary swelling thing.

Let me emphasize that this isn't common, and I certainly don't want to scare anyone about this. I honestly don't know anyone else who has had lymphedema, and I've met lots of cancer patents during my infusions over the past 3 years. While I wouldn't say the docs were surprised by "complication", I think that's more because there's very little that surprises them in the treatment of cancer. Everyone is so different, SE's vary widely, etc. Just keep an eye out and trust your gut if you think something isn't the way you think it should be.

 

[The Mystery Machine]

Thank you for your words Pluto Pony. I really appreciate it.

If you were to look at me, you would not see swelling at first look.

I am 1.5 pts in the overweight category with regard to BMI at the moment, however this is the first time I was ever in my life in that category. While I am not a super athlete or anything, I am in decent shape with regards to fitness.

This is why measuring before cancer treatment is important. The doctor's state all say now, we really don't see anything "bad". I wish we had your original measurements to compare. (Um, me too but MOST surgeon's and oncologists don't include this as part the cancer treatment plan and they should.)

I do have a Lymph PT that is interested in helping me. She is a Professor at the teaching hospital as well as a lymph PT. I have the Flexitouch pumps which I use.

I had to stop reducing my left arm (CDT) because the swelling is in my whole body and it was just not going leaving my body. Now to you my arm would look "normal", however it is actually swollen.

My biggest thing about this is my gut. I can look like I am 10 months pregnant at times with this swelling. It does not move.

I am slowly improving with regard to swelling in my body. My PCP and I are hoping it continues along that path.

I was able to go and get my dd from college on Thursday. I did split the drive over 2 days and wore my compression shorts and top. It was nice to actually be able to do something on my own.

 

[robinb]

I haven't posted in a very long time. Just wanted to share I officially hit the 5 year survivor mark yesterday. I remember feeling like this mark was a lifetime away when I was diagnosed. All I can say is that I am so very thankful.

Congratulations!

 

[luvmarypoppins]

So many posts, sorry if I dont comment on each one personally

Olallamom - Congrats on the 5 years!!

MM - so sorry you are still dealing with this. I would say the Mayo clinic would not be out of the question. Ds2 friend is at the one in Rochester. I think he is a 2nd year intern/resident? Well he is a boy genius to say the least. Nice guy though. I think he is concentrating on internal medicine from what I saw on facebook.

Laurie - sorry about the eye issues you are having. Slowing down work seems like a nice option. Glad you posted. We need to meet up again sometime!!

Well my cancer tests turned out well so far. They forgot to do one blood test but the endo said she will do it next time. I wasnt too happy but she didnt seem concerned. She is also trying to wean me off one of the bp meds so I have to have ds take my blood pressure 3 times a week. He is not happy about that. Yes, sorry he cant even escape being a nurse at home. The endo needs to get a different med for me since the other bp one I am on interacts with this one, I asked her what is she switching me to because I am so allergic and react to everything. She said, Yes, I know and I havent figured that out yet.

The Food and Wine trip is back on but it took some doing to get a room. I think there is some kind of conference going on and of course f & w itself, so we are staying Oct. 17 and 18th at the Swan for free with dh ff miles, then the 19th and 20th at the Yacht Club with an ap discount and then the 21st back at the Swan. I made the adrs, nothing great, Skippers Canteen, want to try that. Be Our Guest Dinner, Cape May because dh has to have Crab legs, and Ohana and probably lunch in France. Ds3 is excited about going. I think we will do a little early b day celebration with him.

The car accident has still not been resolved Of course we are getting the run around and are on the 3rd insurance company. Dh is in California today so he said he will try to call them in the next day or two.

GAGWTA. Thinking of you all.

 

[minkydog]

I have a question for y'all. I see some people post that they've hit the 1 year mark or the 5 year mark, or more. How do you count that? From the date you were diagnosed? From the date of your surgery, completion of rads or chemo? I'm just wondering for my own sake how I should count my survival. ( I was diagnosed with IDC in July 2015--so far, so good.)

 

[Pea-n-Me]

MINKYDOG!! LONG TIME NO SEE!! How have you BEEN? I was worried about you!

I believe that Survivorship starts at diagnosis - that's how I count it. (We've talked about it here before!)

 

[Pea-n-Me]

Thank you for your words Pluto Pony. I really appreciate it.

If you were to look at me, you would not see swelling at first look.

I am 1.5 pts in the overweight category with regard to BMI at the moment, however this is the first time I was ever in my life in that category. While I am not a super athlete or anything, I am in decent shape with regards to fitness.

This is why measuring before cancer treatment is important. The doctor's state all say now, we really don't see anything "bad". I wish we had your original measurements to compare. (Um, me too but MOST surgeon's and oncologists don't include this as part the cancer treatment plan and they should.)

I do have a Lymph PT that is interested in helping me. She is a Professor at the teaching hospital as well as a lymph PT. I have the Flexitouch pumps which I use.

I had to stop reducing my left arm (CDT) because the swelling is in my whole body and it was just not going leaving my body. Now to you my arm would look "normal", however it is actually swollen.

My biggest thing about this is my gut. I can look like I am 10 months pregnant at times with this swelling. It does not move.

I am slowly improving with regard to swelling in my body. My PCP and I are hoping it continues along that path.

I was able to go and get my dd from college on Thursday. I did split the drive over 2 days and wore my compression shorts and top. It was nice to actually be able to do something on my own.

How is your appetite? So are you saying you've gained weight? And you said you saw a cardiologist, right?

 

[The Mystery Machine]

How is your appetite? So are you saying you've gained weight? And you said you saw a cardiologist, right?

Appetite is fine. I have lost 4 lbs. I am trying to lose about 20.

I saw 2 cardiologists, since the first one practically laughed in my face. What a jerk.

If I want to continue digging, I have to go out of state. There is no one here with any answers.

 

[minkydog]

MINKYDOG!! LONG TIME NO SEE!! How have you BEEN? I was worried about you!

I believe that Survivorship starts at diagnosis - that's how I count it. (We've talked about it here before!)

Thanks, Pea-n-me. I'm doing pretty well. My husband had aggresive prostate cancer over the summer, so much fun. It was a rough go, but they got it all, no mets, and he's doing much better. I am scheduled for a full hysterectomy in October due to gene mutations that are going to try to kill me. After that? Reconstruction, if possible. If not, I will have a knee replacement. That was what I was going to do in 2016 before stupid cancer.

 

[luvmarypoppins]

Minky - glad to hear your dh had his surgery. Hope your upcoming surgery goes well too. You still have a lot on your plate. Hang in there!

Diana - sounds like you had a great trip with your dd and dh.

Well I called in my bp readings and of course the endo was not happy. I dont know why she just couldnt leave well enough alone. She knows I react bad to everything. So she told me the bottom # was too high and to just keep taking the full dose of the one bp med she was tryingto wean me off of at my visit. She said she wasnt renewing the script, so I will check with the pharmacy how much I have left. If she didnt fix that then I will just call her back again.

GAGWTA. Thinking of you all.

 

[The Mystery Machine]

Thanks, Pea-n-me. I'm doing pretty well. My husband had aggresive prostate cancer over the summer, so much fun. It was a rough go, but they got it all, no mets, and he's doing much better. I am scheduled for a full hysterectomy in October due to gene mutations that are going to try to kill me. After that? Reconstruction, if possible. If not, I will have a knee replacement. That was what I was going to do in 2016 before stupid cancer.

Oh brother, when it rains it pours!

Glad to see you here.

 

[Feralpeg]

Minky! So happy to see you here! I've thought of you many times and hoped you were doing okay. Sorry to hear about your husband, but glad he is doing better.

I'm in the process of putting my home on the market and building a new one, so things are really hectic. My sister is also selling her home. We will be moving in together (with Kendall). We decided we are getting to the age that it makes sense to live together. My sister fell and broke her wrist awhile back and the idea of her being alone has bothered me since.

We will be about a mile south of our current location. We will be able to sit by our new pool and watch the fireworks over Magic Kingdom. Life is good.

If you know of anyone needing a house near Disney, send them my way!