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All Topics → Forum: Lymphedema → Topic: HELP! Hypertension post A/C Taxol, Steroids, Rads!

Topic: HELP! Hypertension post A/C Taxol, Steroids, Rads!

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

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Posted on: Apr 14, 2007 02:38 PM

Indigoblue wrote:

Hi,

I have been posting here for some time, and try to come to this site, but mostly have posted on Triple Neg and some other sites. My typing is slow, and reading slow...eyes were affected by chemo. Brain drain extreme. Please bear with me, as it's difficult to express my thoughts, knowledge, and lack thereof. So glad to know you are here to help us. I am really confused about the lymphedemia issue, and when I ask onc., surgeons, radiologists, and especially cancer nurses, the response is always: You don't need to worry about L. since you had Sentinel Node Biopsy; but they took 4 nodes, dug around in there, and cut some nerves which after a year and 5 months have not returned to normal.

Is high blood pressure, 159-170/90-101, swelling hands, neuropathy, swollen breast, (from partial, so called lumpectomy) minus 4 lymph nodes from SLN Biopsy, a concern for lymphodemia? I am confused, and yesterday (in response to the high blood pressure) my doctor took blood pressure from my surgery (left) arm.

When I cautioned her she said, "you only had one node removed, right?". I responded, wrong... does anyone care?

She's my fam doc, so okay, she has not been in the fold of the big hospital schematic team thing, and they don't send her important info, which I keep asking them to send her.

Point is, the so-called "team" doesn't seem to care about it, and the big-wig cancer nurse acts as tho I am a hypochondriac when I ask about lymphedemia. The surgeon cut nerves, I had a huge hematoma the size of a small watermelon in my breast, and a seroma the size of a large apple under my left armpit, which was later cured with Cipro antibiotic. (all after surgery). I also developed a yeast infection on my skin, under, on breasts, arms, stomach, which was cured with nystop powder and diflucan.

The response I get: You had sentinal node biopsy, so you don't need to worry about lymphedemia. After 4 x AC, 12 weekly Taxol treatments and mega doses of Dexamethazone Steroid (allergic to Taxol), Aranesp, and then 32 treatments of rads., 5 months later I have SEVERE neuropathy, joint pain, shoulder pain (extremely bad) and pain under and in my lumpectomy (partial mastetomy) left breast.

Help. The high blood pressure is particularly disturbing since my doctor wants me to take medication. The shoulder blade, headaches, all this stuff just gets worse. Is it a sign of Lymphedemia? Should I seek help?

Thanks for reading... and help would greatly be appreciated! Advice is truly welcome. I can't think straight, and the doctors and nurses have intimidated me beyond belief. Help!!!

Indi

IDC 12/05 dx., Stage I/II, clean margins, but neg lymph nodes, lymphatic (blood) invasion present, l.7 cm., stellate, 2mm from chest wall, Triple Negative Receptor. Aggressive Grade 3. Log in to post a reply

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Apr 14, 2007 04:23 PM Binney4 wrote:

Ooh, Indi, I'm really sorry you're having all this trouble. Would it help (or not?!) to know your onc team is not alone in failing to recognize your lymphedema (LE) concerns. Many, many of us have fought our way through their ignorance and intimidation, only to find in the end that the reason they act like they know nothing about LE is because it's not taught in our med schools and nurses' training programs.

Okay, I'll try to take this one step at a time and see if it makes any sense to you. Let's start with the misinformation on your risk of developing LE. When they started doing the SNB procedure several years ago they hoped that would lower the risk of LE to 1%, but recent research shows the percentage of arm LE after SNB is actually closer to 10%. More significant for you, the rate of breast LE following lumpectomy with SNB and rads is a whopping 28%. Very possibly YOU, in other words.

Of the symptoms you list, both hand swelling and breast swelling are indicators of LE, as is shoulder pain in some cases, especially if it isn't affected much by the usual pain killers. Your history of both seromas and (especially) infections predisposes you to LE problems and/or indicates the presence of LE already. The high blood pressure is not indicative of LE, but it certainly isn't helped by the pain you're experiencing or the stress of not being able to get help with this.

Should you seek help? ABSOLUTELY! Insist on a referral to a qualified LE therapist from any reasonably cooperative member of your medical team. If they roll their eyes at you, ignore them. Make a fuss. Whatever it takes.

Here's what you need to know about therapists: any you see should have at least 135 hours of specifically LE training beyond their PT or OT certification and at least a year's experience treating LE. CALL AND ASK BEFORE YOU GO. While you're at it, ask if they're experienced and comfortable treating breast LE. Do this soon, because the sooner you get treatment the better the outcome -- and the quicker you'll get relief.

Here's a site for finding a qualified therapist near you:
www.mylymphedema.com

And do check out the Position Papers on Therapy, and Training, at the National Lymphedema Network:
www.lymphnet.org

The therapist will be able to evaluate your situation and tell you if it's LE or not and if so, she (or he) will begin therapy, which involves a gentle directional massage, wrapping or other compression, and skin care. LE is for life, but with the skills you learn from a therapist you will be able to get control of it and keep it that way.

Indi, please don't be intimidated. You're definitely on the right track. Once you've gotten an LE evaluation and have your life back in your own control, you can start educating your medical team!

Hugs and prayers for quick relief,
Binney
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Apr 14, 2007 06:36 PM Serendipity wrote:

Dear Indi,
Binney has given you good advice--I just wanted to add that you sound a lot like me. I "only" had 3 lymph nodes removed so all my doctors didn't want to believe I had Breast/Chest Lymphedema in my reconstructed breast. I got four infections and a very swollen breast before I finally went to my oncologist (the most sympathetic of my docs) and said, "I want a referral to a Lymphedema Therapist." I even added, "If it is not Lymphedema, then I'm sure the therapist will tell me." That's how I got my referral.

Take care and be strong,
Jane
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Apr 14, 2007 07:49 PM NPat wrote:

Indi,
You don't have to have cancer to have lymphedema. Most of my patients with LE are NOT cancer survivors. They have had sunburns, breast augmentation, obesity, burns, falls, strokes, abdominal surgery and pacemaker implantation. Welcome to the world of medical ignorance. Ninety-nine percent of healthcare providers are ignorant about LE. Become informed and get yourself to a certified LE therapist ASAP. I was stupid about LE until I got the gift that keeps on swelling and I still deal with other providers telling my patients, "Oh, that leg isn't too swollen. I don't think you need treatment," or in other words, "That NP you are seeing is a nut (me)."
Pat
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Apr 16, 2007 09:13 AM Indigoblue wrote:

WOW!!!
Thank you so much for the knowledge! I live in Ohio, and there are no Lymphedema Clinics mentioned on the sites; however, I did call a place in Beachood,Ohio; the therapist is supposed to call me back with a referral for someone close by. My goodness, I am so blessed to have come to this site. I've had swelling in my ankles and feet, back pain, and achey swollen areas which I attributed to 25 pd. weight gain after treatment. Chocolate, sugar, ice cream (diet), tried the diet stuff, but it's all so loaded with sodium and chemicals.
My husband loves Chinese food, but every time I eat it I get ringing in my ears, a headache, and feel extremely bloated. MSG? Likely...I ask them to emit it, but that's wishful thinking. I rarely eat any fast food, but since it is so difficult to chop veggies, and since my hand feel as tho they've been boiled in hot oil everytime I wash dishes, do simple tasks, I've been at the mercy of my husband's cooking for over a year.

It took me a week to clean the fridge; don't ask. The stove/range, however took 3 weeks. It was a giant grease bomb, waiting to explode. It would normally not be a big deal to remove elements, replace wires, scrub the oven with (even two treatments of oven cleaner in a self cleaning oven)....scrubbies. My arms, neck, shoulder blade, shoulders, standing on my feet for any length of time; are all painful. Particularly the burning sensatio and the electrical jab like sensations in the hands. ouch!

Then, as today, numbness in fingers and toes, headaches...
this really stinks. The professionals told me these symptoms would get better, and the surgeon's assistant mentioned going to a neurologist/and or pain specialists.
I really don't want to take meds, neurontin has some nasty side effects, and I hate to admit this, but I am a bit phobic about people putting their hands on me.

I am trying to walk 3 times a day, do light exercise, etc., and above all working to eat healthful foods. My poor husband works, his mother is ill (in another state) with breast cancer sarcoma, so the kitchen is a nightmare whenever he cooks. Even when he gets a pizza, it always has triple pepperoni, sausage, greasy cheese and how can one person order one pizza, dirty a zillion dishes and turn the oven I just repaired into another greasy mess?

Lymphedema: Husbanditis...lol
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Apr 16, 2007 09:32 AM Indigoblue wrote:

Thank you for your heartfelt advice. Did I say thank you?
Thank you...so much.

I hate feeling stupid! I've felt like a total moron since even before I discovered the tumor 3 months after a mammogram and sonogram. Dense breasts.

Question: Do you think there's any way to convince a surgeon, oncologist, whomever, to please forgo the Mammogram and opt for an MRI? I'm disturbed about this since the last Mammogram was so ambiguous. The hematoma garbage, clots, cysts, calcifications and a nodule are still there. I didn't even ask about the right breast, but it looked like it had a lot of junk floating around.

At the time, the radiologist had not been able to find my original Mammogram from before surgery, but she had every exray up for display and discussion. There were 3 doctors, some nurses, all of which I did not know, present in the room.

When I left, they gave me some end of life books, pamplets, etc., and all looked at me as tho I was going to keel over in the waiting room. Later, the radiologist found the earlier pictures, and pronounced me "normal".
As a triple negative agressive stage I between II, grade 3, stellate, invasive duck, I was quacking up at the time.

My surgeon later told me I was "cured", and acted very defensive when I pleaded for an MRI.

What can we do? What are we supposed to eat, and what exactly denotes a healthful diet? Supplements are bad, then someone says they're good. Q10 was a medicine I was told to take after treatment; Along with vitamin E, it's now being tanked as "bad".

I am so confused.
so confused.
is it chemobrain, stupidity, or am I just crazeeey?

Anyway, thanks for being here. It helps more than anything to have women who "know" reach out and really, really help.

Hugs.
Indi

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