Dis Breast Cancer Survivors Part IV - GAGWTA

[smiley_face2]

This thread is quiet but so hopefully everyone is doing well

smiley - hope you are enjoying Canada Day

Happy early 4th of July to all and hope everyone has a good week end. I have grilling, reading and teacher prep in the plans. Low key stuff for sure.

We got our ac fixed and it was only 2 parts so that was great. Ds3 took pity on my non airconditioned state and took me to see Finding Dory and we went out for lunch one day last week on one of his days off. We bumped into our pastor and another guy at lunch.

My future medical stuff is neck sonogram, mammo and lots of dental stuff I am sure. ugh.

GAGWTA. Have a great week end ladies.

our sleepy little seaside town is actually having fireworks down on the waterfront tonight for the first time! well first time for Canada day, the local first nations put on a huge display every year on halloween, which just happens to be the day of their independence as a self governing nation, so it's really for that, and it's beautiful, but it's pretty chilly then! we can see them from our back deck though. hubby and I will walk down and watch tonight, hopefully the weather will be ok, yesterday was so sunny and warm, we sat outside till quite late, this morning it was raining! thankfully it stopped for the parade, and the sun is out now, but there are plenty of clouds around! I was really looking forward to sitting right at the beach in the warm and watching them! We live half a block from the main park in the town, and there is so much going on there, it's nice to hear all the people having fun and the music and such.
glad your air conditioning got fixed so easily!
my medical stuff is over for a few months, back mri showed all the degeneration but at least the disks have mostly healed up from my injury last summer. I've been told though, to be very careful because they are still bulging, and I can injure them again very easily. I've lost 18 pounds since last summer and that they said, has helped with the healing a lot, and will help with me not having as many future problems. Dental check up went really well too so that was a big relief after having to have so much done over the past 3 years or so. I am still so tired though, I am guessing still from the horrible flu we had. I wish my immune system had recovered better from the cancer treatment, but it is what it is.
our daughter is doing really well, says she is happier than she has been in years, so I really hope she has turned a corner in her life journey and doesn't have to go through anything like she has again.
an early Happy 4th of July to everyone!
GAGWTA

 

[Feralpeg]

Just stopping by to say "Hi!". Hope all are well. Things have been so hectic here. Hope I have some downtime soon. I keep waiting for those quiet "golden year' to start! lol.
Went to the Studios the other day to see the Star Wars fireworks. Very nice! Hot! Hot! Hot!

Hope you all have a safe and happy 4th!

 

[The Mystery Machine]

Happy 4th everyone!

I am hanging in there going from doc to doc, trying to get this stuff figured out, while at the same time trying to be stylish in compression clothing.

 

[smiley_face2]

Hello all! I hope that the lack of activity here is because everyone is busy with good things. Tmm I hope you have gotten some help. 5 years since my last surgery, and I had to take pain med this week for the ache in the muscles and whole arm, and lot's of massaging. Probably because I have another cold.
In my last post I mentioned going to see the fireworks for Canada day and it did not disapoint! the weather was great and our little town has done so much upgrading, with sidewalks, trees with little lights, gardens, we sat on the benches at the waterfront and felt we were on holiday somewhere! our weather has been a real mix, not like our hot sunny summer last year! but at least there are no forest fires blazing this year! Our son's daughters will be coming to stay next week, for about 10 days. they have so much going on now, and his oldest, has her first summer job one day a week. I can not believe she was only in first grade when he died. She is a good 4 inches taller than me now!
GAGWTA

 

[luvmarypoppins]

Thanks for checking in smiley. I hope you have a wonderful time with your dgds. Sounds like they are growing up fast for sure!

TMM - hope you are getting some relief and finding things bearable.

Well I survived the VBS this week, thanks to my great helper ds3. My normal ladies couldnt help me. One is packing to move and I dont know about the other one. Sometimes she takes a vacation now with her step son and his family. But we also had 2 teen helpers. My one usual girl who is great and a boy. We had 7 girls and 1 boy in the class. It was divided this year and I only taught 4th grade instead of the combined 3rd and 4th which I did in the past.

Dh has been asking me to go to Disney in August with some friends of his from the west coast. I told him I didnt think so since I already saw everything
The flights are so expensive and I did look at some adrs for 4 people and no good times or places are available. My ap does expire next month but if I went I would rather just go for the food and wine in Oct.

GAGWTA

 

[The Mystery Machine]

I am hanging in there.

I have "full body lymphedema" now. I am going to a bunch of docs trying to get an action plan together. Monday is the GI doc. They do not have an answer to my condition as of yet.

The following week I have an appt with another PT that is affilated with a cancer center. They are trying to get me some help as far as getting me to a doctor that MIGHT help me.

Soon I will be the pinnacle of health with eating low salt, low sugar, and a whole food diet along with exercise.

I do MLD (Manual Lymph Drainage), wearing a compression garment on my left arm and compression clothing on the rest of my body. I have a pump rep. coming out Tue.

 

[low-key]

I am hanging in there.

I have "full body lymphedema" now. I am going to a bunch of docs trying to get an action plan together. Monday is the GI doc. They do not have an answer to my condition as of yet.

The following week I have an appt with another PT that is affilated with a cancer center. They are trying to get me some help as far as getting me to a doctor that MIGHT help me.

Soon I will be the pinnacle of health with eating low salt, low sugar, and a whole food diet along with exercise.

I do MLD (Manual Lymph Drainage), wearing a compression garment on my left arm and compression clothing on the rest of my body. I have a pump rep. coming out Tue.

getting old sure anit for sissy's, huh

 

[The Mystery Machine]

getting old sure anit for sissy's, huh

I am telling ya.

 

[Pea-n-Me]

I am hanging in there.

I have "full body lymphedema" now. I am going to a bunch of docs trying to get an action plan together. Monday is the GI doc. They do not have an answer to my condition as of yet.

The following week I have an appt with another PT that is affilated with a cancer center. They are trying to get me some help as far as getting me to a doctor that MIGHT help me.

Soon I will be the pinnacle of health with eating low salt, low sugar, and a whole food diet along with exercise.

I do MLD (Manual Lymph Drainage), wearing a compression garment on my left arm and compression clothing on the rest of my body. I have a pump rep. coming out Tue.

What?? Can you explain more? Remind me - you did chemo, right? And your cancer was on the right side, right? Do you have anything like shortness of breath or anything else besides the edema? PM me if you prefer.

 

[The Mystery Machine]

What?? Can you explain more? Remind me - you did chemo, right? And your cancer was on the right side, right? Do you have anything like shortness of breath or anything else besides the edema? PM me if you prefer.

My treatment was left side, lumpectomy, 33 rads, no chemo.

Just did a search Pea and did not realize you asked me a question, sorry. I was going to give an update today. It has been a very stressful thing getting to the right people to help me.

Yes, my lymphedema is everywhere. Yea me huh? In a nutshell, somewhere there is either an obstruction in my abdomen or I have a GI or cardiac issue.

I had to stop CDT on my left arm and MLD as well. I was wearing the compression garment.

I am going to a LEPT (Lymph PT) that is associated with out major cancer center here. I also have an appt. with a doctor next month who a plastic surgeon however he is now working with other doctors & LEPTs trying to pioneer treatment for Lipedema and Lymphedema.

So bottom line for ANYONE male or female who gets cancer, my slogan is....

Save your baseline....GET MEASURED!!!!

See a Lymphedema PT before your surgery/treatment, during your treatments, and after. It is the only way to catch it early and begin treatment or detect an issue. Most oncologists POO POO this and ignore it. DO NOT listen to this. It is frankly disgusting that they overlook this.

Mine started in my left groin 2 weeks into rads. I had LE but did not know it and neither did the OT/PTs I was SEEING. WHY? Because I did not have a baseline.

So I will stop here but feel free to drill me to fill in the gaps. I have a lot of info now that is current with lymphedema.

 

[Pea-n-Me]

How often does this occur in the cancer population? I don't know that I've ever seen anything like it before, TMM. As a new nurse I do remember taking care of women who had MASSIVE lymphedema in their arms - not their whole bodies - after radical mastectomies, even before radiation was common, but I see it very rarely today. What do the statistics say? And we see a lot where I work; the worst of the worst, i.e. difficult cases.

 

[robinb]

I missed your post for earlier TMM. I hope they can find a treatment to help you. {{hugs}} Did you have any lymph nodes removed during your surgery? If so, do they think that may be a partial cause?

 

[The Mystery Machine]

How often does this occur in the cancer population? I don't know that I've ever seen anything like it before, TMM. As a new nurse I do remember taking care of women who had MASSIVE lymphedema in their arms - not their whole bodies - after radical mastectomies, even before radiation was common, but I see it very rarely today. What do the statistics say? And we see a lot where I work; the worst of the worst, i.e. difficult cases.

OK, Pea, so I get to educate you now, lol. It is a lot of info. You do not have to have a large limb to have lymphedema. People that are very large are probably suffering from LIPEDEMA which is primary and it goes undiagnosed.

I am sure you know the basics that lymphedema occurs in all ages from newborn to old age. Primary lymphedema is genetic with several different genetic disorders.

Secondary lymphedema is caused by anything from a simple bacterial infection, ANY minor surgery, ANY majory surgery, cancer, radiation, chemo, mechanical reasons from accidents to being overweight, cysts, MS, and so on. It can be ANYWHERE in your body.

Basically thousands of people are running around with undiagnosed lymphedema because doctors do not have a clue about it. It is a new field of study with 8 doctors in the USA. There are other doctors that are learning as well but they are few and far between. Plastic surgeons are climbing on board because they have to deal with the lymphatic system in their surgeries.

The medical community relies on the LEPT's to care of it. The LEPT's are running around being advocates and pressuring doctors to include PRE OP measuring & tests before ANY surgery. Doctors do not want to hear it. Who suffers for this? The patients.

Now my full body lymphedema is not diagnosed yet as to the cause so I can't give you a good answer for myself. I have also had it called, Global Lymphedema, Transient Lymphedema, and Atypical Lymphedema. I am keeping track of the names they give me.

I will get a test to hopefully get insight as to why my body is not draining properly. It is a test for the deep lymphatics. Right now I am in the "doctors do not know" phase of this.

I am on the right track and have an appt at the end of august. It is a learning curve for everyone.

Wanted to add, I had a CAT scan of the abdomen and I have fatty liver, slightly elevated #'s. I am pursuing that angle as well with my GI doc. OBGYN was free and clear.

Next stop Cardiac. They are worried about my vena cava. So how about a little lesson in cardiac with fluid and blood pressure? I am watching my diastolic when I do the pumps.

 

[The Mystery Machine]

I missed your post for earlier TMM. I hope they can find a treatment to help you. {{hugs}} Did you have any lymph nodes removed during your surgery? If so, do they think that may be a partial cause?

They just removed the sentinel node.

I am sure it is a combo of surgery, node removal, and radiation which started it. Radiation and chemo are worst offenders because they KILL your lymphatic system in areas of the body.

Surgery is something that is overlooked as a cause but it is one. Any surgery can result in lymphedema. Nice to know huh?

I may have an issue that was already present. I have to press on to figure it out.

 

[Pea-n-Me]

Very interesting, TMM! Do you have a link? I'd like to see how this is being looked at in the medical community.

It is a little puzzling it started in your groin? But from here it's hard to get a good feel of everything that's happened to you, your medical history, etc.

In "right sided heart failure" there can be congestion of blood and fluid coming in to the heart from the vena cavas that can cause swelling in the extremities and abdomen, etc. You would undoubtedly have symptoms of heart failure, though. How have you been feeling? Have the doctors said you are showing any signs of heart failure?

ETA too the thing is with radiation to the left breast, that the beams can "catch" a bit of the heart, sometimes causing problems to the heart. I think it is pretty rare, now, as the dosing is very precise. I would ask my doctors whether this could've been something that affected me, i.e. was the area of my right atrium affected?

 

[Feralpeg]

TMM, sorry to hear you are going through this. I developed lymphodema in my left arm after my first mastectomy. I wore a compression sleeve and used a pump for awhile. Fortunately, mine never got much worse. My left arm is still larger and the heat make it really puff up, but nothing beyond that.

My latest is dysphagia. Scar tissue has developed in my esophagus due to my radiation treatments. This causes food to sit in my esophagus. It doesn't move down to my stomach and likes to make a reappearance. Sadly, there is very little to be done about it. Apparently, it is a pretty common side effect of radiation to the chest area.

 

[The Mystery Machine]

AH ha....starting in the groin. Yep, that is the beginning of classic "lymphedema overload" as per my new LEPT who is a PHD and assistant professor at Wash U.

I had no idea of course and neither did the intake med person, the OT, or the PT.

Had I been measured BEFORE surgery/radiation it would have been caught early.

No heart failure yet. I have had the testing. So I lets cross our fingers it is not my heart. Thanks for the info.

Now to look at me you would never know I have this condition.

 

[The Mystery Machine]

TMM, sorry to hear you are going through this. I developed lymphodema in my left arm after my first mastectomy. I wore a compression sleeve and used a pump for awhile. Fortunately, mine never got much worse. My left arm is still larger and the heat make it really puff up, but nothing beyond that.

My latest is dysphagia. Scar tissue has developed in my esophagus due to my radiation treatments. This causes food to sit in my esophagus. It doesn't move down to my stomach and likes to make a reappearance. Sadly, there is very little to be done about it. Apparently, it is a pretty common side effect of radiation to the chest area.

Thank FP.

So scar tissue in the esophagus? Geesh. I am so sorry.

I hate freaking radiation and the side effects.

 

[Dancind]

TMM, noooooo. That's so unfair. Really hope you can find a specialist to help you. Makes me wonder about the numbness I've had in my left groin area for a while. Kind of figured it was too much sitting on my rear but who knows. Let me tell you, DO NOT take any really long flights in under pressurized airplanes. I got whole body edema from flying to Europe and it got a bit scary a couple of times. My ankles were double in size the whole trip, and I did have shortness of breath. The flight back was shorter and on a Dreamliner (United) and I felt fine after.

LMP, I do NOT blame you for not wanting to go to WDW in August. Holy moly, used to do that and now I'd rather go in January. I just can't handle heat with humidity any more. And I know what you're saying about something new to see. Haven't been since 2012, have rooms booked for October, and I'm thinking of canceling. Mostly because it's a solo trip while DH goes on a long scuba trip, but also because I need to make some money at home.

Janet, glad to hear your daughter is doing better. Did you try the turmeric?

 

[smiley_face2]

TMM, noooooo. That's so unfair. Really hope you can find a specialist to help you. Makes me wonder about the numbness I've had in my left groin area for a while. Kind of figured it was too much sitting on my rear but who knows. Let me tell you, DO NOT take any really long flights in under pressurized airplanes. I got whole body edema from flying to Europe and it got a bit scary a couple of times. My ankles were double in size the whole trip, and I did have shortness of breath. The flight back was shorter and on a Dreamliner (United) and I felt fine after.

LMP, I do NOT blame you for not wanting to go to WDW in August. Holy moly, used to do that and now I'd rather go in January. I just can't handle heat with humidity any more. And I know what you're saying about something new to see. Haven't been since 2012, have rooms booked for October, and I'm thinking of canceling. Mostly because it's a solo trip while DH goes on a long scuba trip, but also because I need to make some money at home.

Janet, glad to hear your daughter is doing better. Did you try the turmeric?

Yes I did and have been taking it. A little soon to tell for sure if it is helping.
I am on the edge here ladies I am seeing the surgeon tomorrow for possible biopsy. Like TMM I have had a really bad time with lymphadema on my whole right side. I am praying it is just a bad bout with that because it got hot, and I havent been feeling well. I woke up one morning to a swollen inflamed breast, the one I had the 2 limpectomys on. I went to the dr in panic mode on friday and she was not happy, and arranged for me to see the surgeon asap. My white lymphocytes are way down too. Over the weekend the inflamation calmed and the swelling went down and the bad bruising is turning yellow so I am praying it is not inflammatory breast cancer! Today it looks a little worse again, but I am feeling worse too. I hope to know more tomorrow. I couldnt get into my oncologist till the 29th but depending on what the surgeon says they may fit me in sooner. We have 2 of our grand daughters staying with us right now and its a real struggle to try and be happy and not worried. I will come back and let you know what they tell me. Tmm I feel really bad you are having such a bad time.