Swollen Anlkes

I would definitely bring this up with my doctor if I were you.  Like others have said, edema can be a sign of other health issues.  I hope it's nothing serious.

sandysp said:

Lymphoedema

I have Lymphoedema. I was stage 3 and had some lymph node involvement. The swelling was the same for me - one leg larger than the right. Oncologists are not so concerned with this issue but it can have some very serious ramifications. I recommend finding a specialist. I see a Physiologist at Sloan Kettering's Rehabilitative Medicine Division, who administers a staff of highly trained Lymphoedema Physical Therapists. Lymphoedema is a chronic, progressive problem that should be diagnosed in early stages so it can be arrested and even hopefully rolled back. This is done by manual lymphatic drainage. I have been prescribed garments to wear also. The treatment is effective. I have to do self lymphatic drainage also. It has really forced me to put my self care first.

Lymphedema can start any time after radiation treatments - even 30 years later. I was caught early since I was trying to get better to have sex and asked my Oncologist if I could see a Pelvic PT. ha, ha! Now having sex or not is almost the least of my concerns. I now even see a Women's Health Psychologist at MSK now who has been a tremendous help to keep me focused on self care and not worry about letting down family members since this self care for Lymphoedema takes a great deal of time. She sees this diagnosis every day.

Anyway, I told you a lot. I have low blood pressure but had the same type of swelling you described.

Good luck to you and let us know how it goes. I understand there are support groups for lymphoedema. Most of the research was done as a result of breast cancer funding. The kind of Lymphoedema I have (genital) is a lousy diagnosis, but the caretakers (PT's) are very understanding and helpful. I would rather be in treatment than be in denial.

Sandy

Sandy,

Here is what is happening to me....it started with tingling in my lower calves and feet in January and has progressed to mid thigh.  Last week the swelling started in both ankles, extreme stiffness and occasional sharp pains anywhere in my legs.  Neuro doesn't think that it is neuropathy, I have no loss of feeling or numbness.  All blood work has come back normal, xrays of neck and lower back show nothing and a MRI of the neck only show fluid filled cysts in neck area, normal and usually do not need to be addressed. I had NO lymph involvement.  Any ideas?  Went to ER this weekend as swelling increased and there are these strange little lumps in the swelling!  No pain, not hives, not bug bites, they are internal about the size of small peas.  My blood pressure is on the low side which is my norm.  The more active I am, the more aggravated the swelling and tingling become.  I also had ultrasound of the legs to check for clots, didn't really think that was the problem as it is in both legs, just as a precaution....no clots found.  May I just say that ultrasound was painful and I almost had to stop it.  When he applied pressure to my legs it hurt REALLY bad, so tender.  Maybe inflammation?  Anyway, by the neck day i had developed in a bruise in the area of the one of the spots they checked!

Anyone have ANYTHING similar to this, I need a new a path to follow up on this.

TIA,

Joanne

eihtak said:

Joanne....

Wow, I am worried for you, please continue to search for doctors advice. The little bumps you describe sound really unusual, but as I'm sure you know the swelling could be kidney related, heart/lung, even liver. Are you on any steroids or have a hormone thing going on? Medication related??? Please keep us posted, I'll have you in my thoughts and prayers.

Kidney function tests- normal, chest xray - normal, EKG -normal.  No steroids.  Only meds are "prilosec" because the cough maybe heartburn and Canasa for chronic radiation proctitis and have checked to see if this is even a remote rare side effect of either and it isn't.  Talked with my rad onc today to seek his input and nothing came to him so he will "present" the case tomorrow at his unit meeting.

Wonder if it could be vein related, side effect of chemo?  Any thoughts?

I did get an appointment for tomorrow with a Rheumotologist.....

Luckily I am not in constant pain.

Joanne

sandysp said:

Fibrosis

They mentioned "fibrosis" in my legs and pelvis along with the swelling. The MLD (manual lymphadic drainage treatment) has broken up some of the fibrosis and completely relieved the swelling. So that might be what this you have too. I also have the tingling and pulsing and nerve pain. Lymphedema is associated with trauma. I don't think you have to have had the cancer in a lymph node to have it, but some of us are predispositioned to Lymphedema (sometimes spelled Lymphoedema) through heridity factors.

Radiologists and Oncologists and even Reumotologists know very little about this. Most of the research has been done for breast cancer and it was only recognized as a side effect of cancer treatment in the 1980's. There is a good site: National Lymphoedema Network. I believe whether cancer was present in the lymph nodes, since we had radiation to our pelvic region, we are at risk for Lymphedema. I recommend you go back to your Pelvic PT with your leg problems. We really have to advocate for ourselves.

Please be vocal about this and let us know how you are doing.

I wear thigh high compression stockings with special compression shorts made especially for these issues. My therapist says I will need to wear them every day. I have been bummed about this, but I only need to look around to realize how lucky I am to be as well as I am and alive. That being said, I don't want to underestimate the risks of Lymphedema, especially this type since there is so little research on female genital lymphedema. So I will just deal with the discomfort and inconvenience one day at a time. The only two treatments are MLD and compression bandaging. But we need to stay close with our physicians and learn as much as we can. On my own initiative, I fasted and became a all organic vegan who avoids most grains. I lost fourteen pounds and do a lot of high intensity exercise to sweat as much as possible. All these things are helpful perhaps, but nothing dietary is going to cure me.

Does your cancer hospital have a good rehabilitative medicine division? If so they must have people working with Lymphedema patients. It was my Pelvic PT who first uttered the words lymphedema. When I asked her if I had genital lymphedema, she said very quietly, "yes". It's not a good thing, but we have faced worse news, right?

Love,

Sandy

 

 

 

Could it be yeast?  Are the bumps painful when u press on them.  Have u been consuming a lot of sugar?  This can activate the yeast.

Missgrace said:

Sandysp,
 So, that's why you

Sandysp,

 So, that's why you fasted for 7 days? And became vegan? You must be a very strong woman. I can't even even stand to cut back on salt.

When I get angry enough, I can do just about anything. I am slow to anger, is all. That is probably a good thing. But fasting and detoxing and then becoming highly selective about what I put in my body gives me a feeling of doing something good for myself. I definitely would fast again. The Vibrant Cleanse product I used kept my blood sugars in tact. The hardest parts were figuring out what to do with myself with all the time I saved not revolving around what I was going to eat next. (I have already fallen back into that pattern). But one meal or snack at a time I make the decision whether or not to eat dairy, meat, fish, eggs and whether or not to eat wheat and corn, which is pretty hard to avoid. I live near a Whole Foods and particularly love their Quinoa Flax bread. It is my favorite bread of all time.

Have you gotten any feed back on those ankles from your doctors?

All the best,

Sandy

Missgrace said:

swelling

I don't see the doctor for two more weeks but I followed your advice and am now wearing the compression stockings most of the time. I am still intrigued by your week of fasting. Is that when you lost the 14 lbs.? Could you tell me more about it? what is Vibrant Cleanse? Right now, I am eating anything and everything that doesn't move too quickly and then I chase it with a few cocktails.

Ha, ha! You are more woman than me! I quit drinking any alcohol a year or two before my diagnosis. so I guess gradually, I am making more choices about these things, mostly because what I did when I was younger just doesn't work for me now at age 63. My 60's are a lot different than my early 50's and that's really okay with me. There is life after alcohol, and meat, dairy, etc. although you'd never know it to watch TV or a movie or look at a magazine or go to a restaurant, etc. Ha, ha! I smoked in my 20's. It is all the samed to me now. 

All the best,

Sandy

sandysp said:

compression stockings

I just wrote our congressman about the Lymphedema Treatment Act via lymphedematreatmentact.org. Apparently we don't have coverage for this on medicaire or medicaid. Early diagnosis of Lymphedema is very important and will save tax payers mucho dollars and suffering. Apparently our system isn't yet on the ball. In the letter (which was pre-written) I saw this paragraph:

Complete Decongestive Therapy (CDT) is the gold
standard and only known course of treatment for lymphedema. CDT is a
multi-modal treatment that is only effective when used in its entirety.

I just wanted to bring this to your attention and encourage you to keep insisting on treatment if you can.

sincerely,

Sandy

Sandy and anyone else,

The testing continues and so does the swelling.  Both the rad onc and the lymphedema therapist both feel it is not lymph related as the swelling is atypical, nonpitting and involves both ankles and hands.  I just had an abdominal CT to see if perhaps there is something putting pressure on a nerve or the nodes.  My rad onc is wonderful in that at least he admitted he had no clue and invited his colleauge to come check out my "lumps" within the swelling.  I have a nerve conductivity test scheduled for this Thursday.  Walking has become increasingly more painful and all this unknown is becoming unnerving.  Luckily I am not in chronic pain.  I have to wait four weeks to get the compression thigh highs.  The off the shelf ones do not fit, I am vertically challenged!  They wanted me in waist high ones, but had to opt out of that because of urgency issues.

My thoughts and prayers are with all the new members of our very select group and heaps of thanks to all those that are blazing the trail ahead of me!

Joanne