Dis Breast Cancer Survivors Part IV - GAGWTA

[leebee]

Can I ask a question about lymphedema? My sister, who is 50, had colorectal cancer when she was 30. Because she had 7 (or was it 9?) nodes involved, they were pretty aggressive surgically, removing her anus, rectum, and most (if not all) of her large intestine (can't remember if they took small intestine or not), leaving her with a permanent colostomy. She had radiation and chemo and beat the cancer, which is amazing for so many reasons! ANYHOW... last Saturday she went to the ER and they admitted her to the hospital. Her lower left leg was red and so swollen that they were worried that the tissue would rupture. She was running a fever and having extreme trouble breathing. She was in the hospital for 4 nights, on IV antibiotics. They did a CT of her heart and ultrasound of her leg to rule out blood clots- both were clear. She said the US on her leg was almost unbearable, the pressure hurt so much. The doctors kept her in the hospital until her fever was down, but they never could culture any bacteria out of her blood. She is home now, on cipro and tylenol. She says the coloration in her leg is still pretty ugly, the leg is still pretty swollen, and it's weeping. Given her past history, does it sound like maybe she should talk to someone about lymphedema? She hasn't mentioned it at all, and she is usually pretty savvy about her medical status. Any thoughts or opinions?

 

[Pea-n-Me]

^ It sounds like classic cellulitis, Leebee, but from here, it's really hard without seeing what her legs normally look like, one in comparison to the other, her body habitus, her complete medical history, etc. Does she normally have swelling in that leg? Did she bump it? What did they say about her breathing? Were her heart studies ok?

 

[leebee]

^ It sounds like classic cellulitis, Leebee, but from here, it's really hard without seeing what her legs normally look like, one in comparison to the other, her body habitus, her complete medical history, etc. Does she normally have swelling in that leg? Did she bump it? What did they say about her breathing? Were her heart studies ok?

Pea-n-me, thanks for your answer. What is cellulitis, and how would you get it? Is it really what it sounds like- infected cells/tissues?

Her heart studies and US were OK; no evidence of clots, so that's good. Her breathing is pretty much bake to normal now, but it took about 5 days. She said she hadn't bumped the leg, stubbed her toe, no cuts but she might have a cat scratch- I actually asked her about this as our mom was bitten by her cat and treated it with epsom salts, which obviously didn't end well (she was in-hospital on IV antibiotics for 5 days and then needed op treatment daily for 2+ weeks after). Anyhow, my sister has several cats and said she almost always has a scratch or claw mark or something (because that's how it is with cats) but that her DH didn't see anything when he checked. One thing I didn't mention, because I totally forgot about it, is that she has cerebral palsy. She has always needed crutches for walking, and her legs and feet are fairly stiff from the CP, even with weekly PT, and sometimes her feet are swollen (but not legs). I can't believe I didn't mention the CP, because I bet it compounds the whole issue- I honestly just didn't think of it.

It could be one of those things that we'll never really know about. I guess in these days of such high-tech medical care we are accustomed to having answers, but sometimes if just doesn't turn out that way. I'm going to mention lymphedema to her when I talk with her tomorrow and see if she wants to bring it up with her doctor, or at least to keep in mind.

 

[tazdev3225]

Hi everyone. I have popped on here now and then but I think I have forgotten to respond for quite awhile. Hope everyone is as OK as they can be.

My dad is now 1 year post surgery and it has been a roller coaster ride. He has learned to deal with bags and now knows to always have spare clothes just in case but has had no issues for a couple of months. He and my mom are actually driving to Florida in a couple of weeks to visit my aunt. Dad's afraid to fly because of the bag. But dad is back to his old self. His sense of humor is back and he looks great. The only thing we have noticed is that he is sometimes a little forgetful. Mom had to remind him several times to get ready for my party. He forgot it was my birthday. I can live with that.

My BIL has stage 3 or 4 kidney cancer or disease depending on whom you ask. We believe it's cancer. This is his third bout so not holding my breath for a good outcome as he also has non Hodgkins and has or had lung cancer. He was very vague when he told my husband.

I just want to say that I know I don't come on here as much as I did when my dad was diagnosed but I want to thank you all for being here. Even just reading at times was a huge comfort knowing how many of you have fought the battle and are still here. It gave me hope when I was down. Thank you again and I hope you all have a wonderful day. I am off to get ready for church, my 7 y/o granddaughter is doing a reading today and I am nervous for her but she has such an attitude she will breeze through it. She is my clown.

 

[Pea-n-Me]

Pea-n-me, thanks for your answer. What is cellulitis, and how would you get it? Is it really what it sounds like- infected cells/tissues?

Her heart studies and US were OK; no evidence of clots, so that's good. Her breathing is pretty much bake to normal now, but it took about 5 days. She said she hadn't bumped the leg, stubbed her toe, no cuts but she might have a cat scratch- I actually asked her about this as our mom was bitten by her cat and treated it with epsom salts, which obviously didn't end well (she was in-hospital on IV antibiotics for 5 days and then needed op treatment daily for 2+ weeks after). Anyhow, my sister has several cats and said she almost always has a scratch or claw mark or something (because that's how it is with cats) but that her DH didn't see anything when he checked. One thing I didn't mention, because I totally forgot about it, is that she has cerebral palsy. She has always needed crutches for walking, and her legs and feet are fairly stiff from the CP, even with weekly PT, and sometimes her feet are swollen (but not legs). I can't believe I didn't mention the CP, because I bet it compounds the whole issue- I honestly just didn't think of it.

It could be one of those things that we'll never really know about. I guess in these days of such high-tech medical care we are accustomed to having answers, but sometimes if just doesn't turn out that way. I'm going to mention lymphedema to her when I talk with her tomorrow and see if she wants to bring it up with her doctor, or at least to keep in mind.

Yes, a cat scratch could do it. (And I think there can be other problems associated with cat scratches, in particular.) Often we see it after someone bumped their leg and didn't think much of it. Yes, it's an infection of the skin, and it can be incredibly painful! (Had someone this past week screaming in pain from cellulitis in the arm. Had to give IV dilaudid.)

Lymphedema is specifically related to the lymph channels, which run parallel to the blood vessels, often related to surgery (where channels are cut) or radiation (where they're further damaged). The lymph fluid "loses it's way" and has nowhere left to go, so it leaks into surrounding tissues. I've only seen it in one area of the body - often an arm after surgery - where lymph nodes are removed - and radiation; or sometimes a leg. TMM's case is an interesting one. I hope she can find someone to help.

The reason I say it's hard from here to comment is because there are other things that can cause swelling, and the patterns of swelling can help give a clue to what's going on, like if it's in just one leg, or two; how long it's been there, etc. We see a lot of swelling in cardiac care. Sometimes it's so bad that fluid is leaking out of the extremities. It's a tough thing to deal with.

 

[Dan Murphy]

Yes, a cat scratch could do it. (And I think there can be other problems associated with cat scratches, in particular.) Often we see it after someone bumped their leg and didn't think much of it. Yes, it's an infection of the skin, and it can be incredibly painful! (Had someone this past week screaming in pain from cellulitis in the arm. Had to give IV dilaudid.)

Lymphedema is specifically related to the lymph channels, which run parallel to the blood vessels, often related to surgery (where channels are cut) or radiation (where they're further damaged). The lymph fluid "loses it's way" and has nowhere left to go, so it leaks into surrounding tissues. I've only seen it in one area of the body - often an arm after surgery - where lymph nodes are removed - and radiation; or sometimes a leg. TMM's case is an interesting one. I hope she can find someone to help.

The reason I say it's hard from here to comment is because there are other things that can cause swelling, and the patterns of swelling can help give a clue to what's going on, like if it's in just one leg, or two; how long it's been there, etc. We see a lot of swelling in cardiac care. Sometimes it's so bad that fluid is leaking out of the extremities. It's a tough thing to deal with.

Good afternoon, Linda, and everyone.

Hoping everyone is coping with their own individual situations, making progress and/or staying status quo. Everybody here are all such fighters. s

As you know, Linda, Marie had a lot of positive lymph nodes removed back in 1998, 18 years ago, with her stage III breast cancer. I seem to recall it was 15 in number. Marie did not have lymphedema until about 6 years ago, 12 years without. We think it was brought on by her/us working that summer in our garage, moving boxes and such a lot. She put a more than normal strain on her arm and that is where/when we think the lymphedema started. She wears a various compression sleeves always, pretty much 24/7. She goes about every 2-3 weeks for a specific manual massage therapy (I forget the name of it) from a therapist who mainly does that.

In the past 5 years she has had cellulitis in that arm 4 times. It comes on quickly...pain, a fever, redness and heat in the arm. All have required trips to the ER. The most recent was about a month ago. She and I ate lunch at a nearby restaurant. She was fine there. When we got home, maybe an hour and 30 minutes afterward, she said her arm was sore and that she had the chills. I took her temp, about 100.6, not overly high. She was wondering if it was cellulitis again. I suggested we go in. She wanted to wait. An hour later I took her temp again, 102.6. I suggested we go to the ER, she said she did not yet have the 3rd symptom, redness. I suggested again, she agreed. By the time we got to the ER, maybe a total time 20 minutes later, it was red. They started on an IV of vancomycin. This time they admitted her for a 2 night 3 day stay in the hospital on IV antibiotics. It was cleared up fine and she was released.

Just as a bit of additional update, Marie had a TIA, 3 day hospital stay, in February and a hip replacement in June, 4 days hospital, 11 days rehab nursing home and 2 months out patient PT. And then I was in hospital in July for 3 days with lung infection.

We've been doing our best to support the medical community.

 

[smiley_face2]

Good afternoon, Linda, and everyone.

Hoping everyone is coping with their own individual situations, making progress and/or staying status quo. Everybody here are all such fighters. s

As you know, Linda, Marie had a lot of positive lymph nodes removed back in 1998, 18 years ago, with her stage III breast cancer. I seem to recall it was 15 in number. Marie did not have lymphedema until about 6 years ago, 12 years without. We think it was brought on by her/us working that summer in our garage, moving boxes and such a lot. She put a more than normal strain on her arm and that is where/when we think the lymphedema started. She wears a various compression sleeves always, pretty much 24/7. She goes about every 2-3 weeks for a specific manual massage therapy (I forget the name of it) from a therapist who mainly does that.

In the past 5 years she has had cellulitis in that arm 4 times. It comes on quickly...pain, a fever, redness and heat in the arm. All have required trips to the ER. The most recent was about a month ago. She and I ate lunch at a nearby restaurant. She was fine there. When we got home, maybe an hour and 30 minutes afterward, she said her arm was sore and that she had the chills. I took her temp, about 100.6, not overly high. She was wondering if it was cellulitis again. I suggested we go in. She wanted to wait. An hour later I took her temp again, 102.6. I suggested we go to the ER, she said she did not yet have the 3rd symptom, redness. I suggested again, she agreed. By the time we got to the ER, maybe a total time 20 minutes later, it was red. They started on an IV of vancomycin. This time they admitted her for a 2 night 3 day stay in the hospital on IV antibiotics. It was cleared up fine and she was released.

Just as a bit of additional update, Marie had a TIA, 3 day hospital stay, in February and a hip replacement in June, 4 days hospital, 11 days rehab nursing home and 2 months out patient PT. And then I was in hospital in July for 3 days with lung infection.

We've been doing our best to support the medical community.

That is just so much for you both to be going through! I hope that things will be quiet for you both for a while so you can gather your strength! My last bout of lymphadema and cellulitis, which thankfully was not bad enough to put me in the hospital, I now realize was brought on my extreme physical exersion and pulling hard with the side os my surgery. It can be easy to forget when these surgeries were so long ago, 5 years for me, and to get lax about protecting ourselves and not over doing things. I learned a big lesson and won't be doing anything like I did again.

 

[The Mystery Machine]

Can I ask a question about lymphedema? My sister, who is 50, had colorectal cancer when she was 30. Because she had 7 (or was it 9?) nodes involved, they were pretty aggressive surgically, removing her anus, rectum, and most (if not all) of her large intestine (can't remember if they took small intestine or not), leaving her with a permanent colostomy. She had radiation and chemo and beat the cancer, which is amazing for so many reasons! ANYHOW... last Saturday she went to the ER and they admitted her to the hospital. Her lower left leg was red and so swollen that they were worried that the tissue would rupture. She was running a fever and having extreme trouble breathing. She was in the hospital for 4 nights, on IV antibiotics. They did a CT of her heart and ultrasound of her leg to rule out blood clots- both were clear. She said the US on her leg was almost unbearable, the pressure hurt so much. The doctors kept her in the hospital until her fever was down, but they never could culture any bacteria out of her blood. She is home now, on cipro and tylenol. She says the coloration in her leg is still pretty ugly, the leg is still pretty swollen, and it's weeping. Given her past history, does it sound like maybe she should talk to someone about lymphedema? She hasn't mentioned it at all, and she is usually pretty savvy about her medical status. Any thoughts or opinions?

That could be lymphedema, stage 2 . Tell her to see a lymphedema PT ASAP to be looked at. She could be incurring permanent damage. This is from breast cancer.org however the same principles apply.
http://www.breastcancer.org/treatment/lymphedema/how/stages

Stage 2 (moderate): The affected area is even more swollen. Elevating the arm or other area doesn’t help, and pressing on the skin does not leave a pit (non-pitting edema). Some changes to the tissue under the skin are happening, such as inflammation, hardening, or thickening. Stage 2 lymphedema can be managed with treatment, but any tissue damage can’t be reversed

The weeping could be lymph fluid, which are white blood cells. She needs to also see her primary because she is going to be battling infection for awhile. Sometimes you may have to be on a low dose of long term antibiotics for awhile.

I have to battle cellulitis on my hands from swelling because I have eczema. ANY little cut can result in cellulitis. Cellulitis can go into sepsis. Tell her to do her homework with how to protect her skin.

Your lymph fluid (white blood cells in fluid which is denser than water) is what "washes away" bacteria from a cut, stuff absorbed by skin, etc.. It does it all the time, 24/7. When the lymph fluid is stagnant from the swelling, the bacteria remains and builds thus causing cellulitis. Hope that makes sense.

So sorry for your sister.

 

[The Mystery Machine]

Update on me....

Still waiting on my stress echo, but I think I passed with flying colors.

The specialist doctor stated he could not help me. He and the cardiologist are saying it is not lymphedema but edema. Bottom line they do not know squat.

So my next doctors to see are outside of my state.

 

[maxaroni]

That could be lymphedema, stage 2 . Tell her to see a lymphedema PT ASAP to be looked at. She could be incurring permanent damage. This is from breast cancer.org however the same principles apply.
http://www.breastcancer.org/treatment/lymphedema/how/stages

Stage 2 (moderate): The affected area is even more swollen. Elevating the arm or other area doesn’t help, and pressing on the skin does not leave a pit (non-pitting edema). Some changes to the tissue under the skin are happening, such as inflammation, hardening, or thickening. Stage 2 lymphedema can be managed with treatment, but any tissue damage can’t be reversed

The weeping could be lymph fluid, which are white blood cells. She needs to also see her primary because she is going to be battling infection for awhile. Sometimes you may have to be on a low dose of long term antibiotics for awhile.

I have to battle cellulitis on my hands from swelling because I have eczema. ANY little cut can result in cellulitis. Cellulitis can go into sepsis. Tell her to do her homework with how to protect her skin.

Your lymph fluid (white blood cells in fluid which is denser than water) is what "washes away" bacteria from a cut, stuff absorbed by skin, etc.. It does it all the time, 24/7. When the lymph fluid is stagnant from the swelling, the bacteria remains and builds thus causing cellulitis. Hope that makes sense.

So sorry for your sister.

My DH has had cellulitis in his leg and it is awful. 15 years ago, he had an injury in his leg, which got infected. It went to cellulitis and then necrotizing fasciitis, to the point he nearly lost his leg. He was very sick, hospitalized for 11 days, coming home on IV antibiotics. Since then, any little anything in that leg can lead to cellulitis. Many times, it comes from a flare up of excema that he gets in his feet. Another time, he was working outside and got a little cut on his leg. Bingo, cellulitis. However, with him, he doesn't notice anything until he gets sick. It hits him in minutes, nausea, vomiting, high fever. The redness, swelling and pain comes after this. He winds up in the ER for fluids and IV antibiotics. His leg will always be compromised. It isn't something to mess around with.

 

[Feralpeg]

Hi, Ladies! Just popping in to say hello and check on everyone! So busy right now, but you all are never far from my mind!

 

[The Mystery Machine]

My DH has had cellulitis in his leg and it is awful. 15 years ago, he had an injury in his leg, which got infected. It went to cellulitis and then necrotizing fasciitis, to the point he nearly lost his leg. He was very sick, hospitalized for 11 days, coming home on IV antibiotics. Since then, any little anything in that leg can lead to cellulitis. Many times, it comes from a flare up of excema that he gets in his feet. Another time, he was working outside and got a little cut on his leg. Bingo, cellulitis. However, with him, he doesn't notice anything until he gets sick. It hits him in minutes, nausea, vomiting, high fever. The redness, swelling and pain comes after this. He winds up in the ER for fluids and IV antibiotics. His leg will always be compromised. It isn't something to mess around with.

Ugh, that is awful. I hate this condition and the lack of info & research on it.

 

[rajak73]

Popping in here for my DW. I admire everyone on here fighting. Ladies, get that mammogram! My DW hadn't had one since 2004, decided she should probably get one this year, well, it showed a spot, they biopsied, a cancer cell, no lump, no clump, nothing but cells, they did surgery to remove the affected area and a couple of lymph nodes and we are waiting for the results today. The surgeon told her that a few years ago, that wouldn't have shown on the mammogram until it had turned into a lump, that's how much advancement there has been. The mammogram picked up 2 little spots no bigger than 1/4 size of a dime! It's a stage 0, non invasive at this time and doctor said it's 100% curable. I feel so blessed!

 

[smiley_face2]

Popping in here for my DW. I admire everyone on here fighting. Ladies, get that mammogram! My DW hadn't had one since 2004, decided she should probably get one this year, well, it showed a spot, they biopsied, a cancer cell, no lump, no clump, nothing but cells, they did surgery to remove the affected area and a couple of lymph nodes and we are waiting for the results today. The surgeon told her that a few years ago, that wouldn't have shown on the mammogram until it had turned into a lump, that's how much advancement there has been. The mammogram picked up 2 little spots no bigger than 1/4 size of a dime! It's a stage 0, non invasive at this time and doctor said it's 100% curable. I feel so blessed!

that is great news!! I saw my oncologist yesterday and he declared me "cured of cancer"!! it has been 6 years since my diagnosis, 5 years since the end of my treatment. it's the 5 year cancerversary they use to declare you cured Like my dr said, maybe I will never face this disease again, but given my family history, and the fact that it did hit me, I need to be more aware going forward. I have 1 sister who died from her cancer, and my other sister has had 3 different primary cancers, and is doing really well now. lot's of other history too, so something must be running in our genetics! Anyway, I am glad it was caught so early and is curable! mine was at stage 2b and the treatment was really hard, but here I am, apparently cured!

 

[rajak73]

I saw my oncologist yesterday and he declared me "cured of cancer"!!

Fantastic news, I'm so happy for you!! Hope you stay that way forever!!
There is really no family history here of breast cancer. She see's the oncologist next week to see if they want to do a pill for 5 years or radiation to kill any micro cells. I like to use how they found it by using a cracker, break off the corner of the cracker, see that piece? That's not what it was. Now, take another piece of the cracker, smash it fine, remove all crumbs except maybe 3, spread them apart, that is what they found! Amazing.

 

[maxaroni]

So happy for those getting good news during their journey. Ladies, never ever stop fighting.

Reading a bit about lymphedema that some are going through. My mom had breast cancer back in 1989 and had a lumpectomy with chemo and radiation. She never lost her hair and used an "ice cap", don't know if that was it, or she just very fortunate. I have only read about the ice cap in the last few years as though it was something new. No clue. at any rate, I do not recall anything about lymphedema or a compression sleeve. She did have lymph nodes removed and some were positive. She was cancer free for 12 years when cancer hit again...same breast. This time, she needed a mastectomy, no chemo. The doctor, a leading doctor in the area,mentioned lymphedema but no compression sleeve. A friend had had cancer 5 years later, same doctor and she was told to use the sleeve 24/7. My mom did wind up with lymphedema. My poor mom wound up with many other health issues, so that was the least of her concerns. However, the swelling in her arm was awful. I started reading about it and learned how terrible this can be.

Last year, a co-worker went through breast cancer and was told to get the sleeve. She didn't want to get it but after learning about it, I convinced to get it and USE it.

It's very devastating and hard to go through the cancer journey. Why, oh why, do these complications need to rear their ugly head and make things even more difficult.

I applaud all of you ladies with your strength and courage.

 

[Dancind]

Thanks for the replies. Everyone I know that has cancer gets PET scans and CT scans. I just thought it was odd that they didn't do it for her and wondered if this is the new norm. My aunt has stage 4 breast cancer and gets PET scans and CT scans. She gets the PET scans every 6 months and the CT scans every 3 months (maybe it's because she is stage 4). BTW, she is cancer free right now. She is on herceptin, prejuta (something like that) and does/did a vaccine.

This is standard if you have cancer that has shown up in the lymph nodes because it can easily go beyond from there. If no cancer shows in lymph nodes, PET and CT are not standard tests.

 

[Dancind]

Rajak73, I would just say get a second opinion on treatment. To me, less is better. Radiation, chemo, AI's can cause serious Quality of Life issues down the road and often do not improve chances of no recurrence by much. It's a decision everyone has to make, but Stage 0 is a better place to be.

Do not like reading about lymphedema showing up after years. Thinking about all the work involved when we move, will tell DH we need to hire lots of help!

 

[smiley_face2]

Looking to see if there is any word from Snappy!

What was his rationale, TMM? (I don't know if you saw I PM'd you.)

Sorry to hear you're having these issues, too, Smiley. Is there any way you could've fallen on that side?

I've been in touch with Snappy and she is doing ok in her area that's flooded. Leave it to her, doing some volunteer work too.

GAGWTA

Have you heard from her lately? just wondering how she is doing

 

[Pea-n-Me]

Good afternoon, Linda, and everyone.

Hoping everyone is coping with their own individual situations, making progress and/or staying status quo. Everybody here are all such fighters. s

As you know, Linda, Marie had a lot of positive lymph nodes removed back in 1998, 18 years ago, with her stage III breast cancer. I seem to recall it was 15 in number. Marie did not have lymphedema until about 6 years ago, 12 years without. We think it was brought on by her/us working that summer in our garage, moving boxes and such a lot. She put a more than normal strain on her arm and that is where/when we think the lymphedema started. She wears a various compression sleeves always, pretty much 24/7. She goes about every 2-3 weeks for a specific manual massage therapy (I forget the name of it) from a therapist who mainly does that.

In the past 5 years she has had cellulitis in that arm 4 times. It comes on quickly...pain, a fever, redness and heat in the arm. All have required trips to the ER. The most recent was about a month ago. She and I ate lunch at a nearby restaurant. She was fine there. When we got home, maybe an hour and 30 minutes afterward, she said her arm was sore and that she had the chills. I took her temp, about 100.6, not overly high. She was wondering if it was cellulitis again. I suggested we go in. She wanted to wait. An hour later I took her temp again, 102.6. I suggested we go to the ER, she said she did not yet have the 3rd symptom, redness. I suggested again, she agreed. By the time we got to the ER, maybe a total time 20 minutes later, it was red. They started on an IV of vancomycin. This time they admitted her for a 2 night 3 day stay in the hospital on IV antibiotics. It was cleared up fine and she was released.

Just as a bit of additional update, Marie had a TIA, 3 day hospital stay, in February and a hip replacement in June, 4 days hospital, 11 days rehab nursing home and 2 months out patient PT. And then I was in hospital in July for 3 days with lung infection.

We've been doing our best to support the medical community.

I'm sorry to hear this, Dan, but it's a good reminder that problems can re-surface years later. It sounds like you two are doing your best to keep us medical folks busy, lol! I'm glad things are going well despite all the issues you've had. Enjoy those grands!

That is just so much for you both to be going through! I hope that things will be quiet for you both for a while so you can gather your strength! My last bout of lymphadema and cellulitis, which thankfully was not bad enough to put me in the hospital, I now realize was brought on my extreme physical exersion and pulling hard with the side os my surgery. It can be easy to forget when these surgeries were so long ago, 5 years for me, and to get lax about protecting ourselves and not over doing things. I learned a big lesson and won't be doing anything like I did again.

Same with this, a good reminder!

I was moving a big picnic table with my "other" arm several years back now, and I got something in that arm that's never gone away, so I tend to use the arm I shouldn't use as much, more. I have to watch it. Ugh.

I think that there are a couple of things that patients have to take care of more themselves when they undergo the BC journey, at least with some providers, and that is emotional care, and, unfortunately, sometimes the lymphedema piece. I tended to get it in my arm (eight nodes removed, total, after first two were positive), when I vacationed. I think a combination of altitude and sodium in "vacation foods" did me in. So I only wore a sleeve then, on the plane, and tried to watch what I ate as much as possible. (Salty foods are a killer for edema as they tend to pull in and trap fluids in the tissues.) And I had to undergo one round of PT for lymph massage. But all of that I basically figured out myself, and I sought out care on my own for my emotional needs (during chemo and radiation, and afterward, when I felt like I didn't know what had hit me, or where it would all lead, and I was trying to deal with working and taking care of two little ones and my mother, etc.). I think if I had pressed the issues they could've helped me more, but I tended to just deal with them myself. I recognize that most people will look to their care teams for this, though, as they should. Not sure what everyone else has experienced these days.

that is great news!! I saw my oncologist yesterday and he declared me "cured of cancer"!! it has been 6 years since my diagnosis, 5 years since the end of my treatment. it's the 5 year cancerversary they use to declare you cured Like my dr said, maybe I will never face this disease again, but given my family history, and the fact that it did hit me, I need to be more aware going forward. I have 1 sister who died from her cancer, and my other sister has had 3 different primary cancers, and is doing really well now. lot's of other history too, so something must be running in our genetics! Anyway, I am glad it was caught so early and is curable! mine was at stage 2b and the treatment was really hard, but here I am, apparently cured!

I just got the all clear last fall, which was twelve years after my diagnosis. My doc finally said that the risks of my original cancer coming back were now very low, but that I was at the same risk now as the general population of getting another cancer. This was different than what I was originally told by my surgeon, who told me that in the cancer breast, that my rate of recurrence was 5% per year, cumulatively, so that if I lived 20 years, I had a 100% chance of it coming back. I've been bracing myself all these years. My oncologist scratched her head over that one, she said, no, it's likely gone now. So who knows. I think we all get mixed messages sometimes, and it's frustrating. (But I think they do the best they know how too, so I'm not going to fault them for it, just sharing. Medicine is as much an art as it is a science.)

I am frustrated that my insurance company is now charging me $100 for mammograms even though I'm going to the same place I've gone for years, which is now considered out of network. I was sent there originally by my first oncologist after a big problem elsewhere (that caused me to undergo the stress of two biopsies and being told I had a new cancer just after ending treatment, which was false) so that's what I"ve done and it's been good. I still have a seroma in my breast so reading my mamms is difficult. So I talked to my newer oncologist about and she said she saw no reason for me to go out of network and wouldn't write a letter on my behalf, other than to say I had a bad experience, not that they were necessary. So I dutifully paid the bill, and will have to decide this winter whether I'll continue to pay, or go elsewhere (same place as before that caused problem) where they'll be fully covered. I hate that we have to make these choices today. My main thing, obviously, is that I don't want them to miss anything. Nor do I want them to freak out again and start sending me for biopsies and what not. Anyone have advice or opinions? I'm tempted to just bite the bullet but with two in college, I can't keep doing that for everything.

So happy for those getting good news during their journey. Ladies, never ever stop fighting.

Reading a bit about lymphedema that some are going through. My mom had breast cancer back in 1989 and had a lumpectomy with chemo and radiation. She never lost her hair and used an "ice cap", don't know if that was it, or she just very fortunate. I have only read about the ice cap in the last few years as though it was something new. No clue. at any rate, I do not recall anything about lymphedema or a compression sleeve. She did have lymph nodes removed and some were positive. She was cancer free for 12 years when cancer hit again...same breast. This time, she needed a mastectomy, no chemo. The doctor, a leading doctor in the area,mentioned lymphedema but no compression sleeve. A friend had had cancer 5 years later, same doctor and she was told to use the sleeve 24/7. My mom did wind up with lymphedema. My poor mom wound up with many other health issues, so that was the least of her concerns. However, the swelling in her arm was awful. I started reading about it and learned how terrible this can be.

Last year, a co-worker went through breast cancer and was told to get the sleeve. She didn't want to get it but after learning about it, I convinced to get it and USE it.

It's very devastating and hard to go through the cancer journey. Why, oh why, do these complications need to rear their ugly head and make things even more difficult.

I applaud all of you ladies with your strength and courage.

Maybe I look at it from a different perspective being a nurse for thirty years. I've seen so many amazing advancements in that time. Years ago we might be dead, or completely disfigured and broken. So yes, we may have to deal with these types of problems that crop up, but we're fortunate we live in this day and age where we can be cured of this disease, even if we have to deal with some headaches along the way. I think we have to keep it in perspective. Not to say it's not difficult, but when you think of the alternatives, this is usually better. As I'm writing this I'm thinking of a young patient I took care of this summer who had been through a tremendous amount of complications with her treatment yet was looking for whatever else could be offered so she could continue to enjoy her family, friends, and a brand new grand baby. She was a real trouper, and would've done anything at all if it would help her live. Sadly, it wasn't to be for her. So when and if I get down about things, I think of people like her, and some we've known here who aren't with us anymore, and other patients I'm taking care of now who are fighting the fight of their lives, and it makes me feel very fortunate for what I've been given, even if it's not perfect.