TCh vs. ACTh

Thanks Cathy-CA for your response. It is encouraging to hear that you were affirmed in your choice (sorry for your dad's experience, but glad he's okay) In addition to the blood cancers in my family, there is a strong heart disease component.The results of my meeting today with the oncologist puts the choice in my hands, either therapy is appropriate, neither would be "wrong."

 I'll bet you will be glad to have radiation out of the way. In 2005 I had a lumpectomy and radiation, and I can remember the relief the first day I didn't have to make that trip up to the hospital!  I was so over my breast cancer after three years and now this!  There are some things you just can't control.

Have a good holiday weekend!  Gail

I just had a check-up today because I am one week out from rads.  Everything looks good with the exception of still having breast edema.  It's kind of amazing how quickly the soreness and redness heals.  My rad onc is very happy with the progress.  If the edema has not resolved in a month, she says I should consult an edema massage therapist.  Hope everyone is doing well and feeling better every day!

Hi Erica,  I don't have much pain at all. Every once in a while, I get a shooting pain that lasts 30 seconds or so and then disappears.  My rad onc said that my breast would still be healing from rads for at least a month and so she did not think I should see a massage therapist until a month from now.  If the breast edema is still present after a month, then I should go.  She tells me not to call the breast edema 'lymphedema' that the term 'lymphedema' refers to the arm.  She is also measuring to pick up any sign of lymphedema in the arm but says she does not expect it to occur.  I think the whole edema thing is not well appreciated or understood.  Take care!  Hope the worst is behind us!

Hi, MaryAnn and Erica,

You are SO RIGHT that breast edema is not well understood! I just want to clarify something here, because it may be important for you. Lymphedema is not taught well in our med schools or nursing programs, so many of our doctors aren't familiar enough with it to help us much. In fact, MaryAnn, breast lymphedema is certainly possible. It's even fairly common. Recent studies show that close to 20% of us bc veterans who have had SNB and rads will eventually develop it, so it's hardly rare! So, waiting a month to heal is fine, but then don't hesitate to insist on a referral to a well-qualified lymphedema therapist.

As a matter of fact, I have chest lymphedema, and many other women on the lymphedema board here have breast or chest lymphedema as well. (It can also be called "truncal lymphedema" if you'd like to look it up.) There's even a special post-bc bra made especially to deal with this problem. It's called Bellisse, and you can find their web site here: www.bellisse.com. Their site has studies about breast lymphedema, articles to read about it, even pictures of women who have it.

The good news is, it's treatable. With proper care the swelling can be reduced and kept that way. Please feel free to visit the lymphedema board if you have questions or concerns.

And be well!

Binney 

Thanks Binney and MaryAnn, this discussion is helping. I just canceled my appointment with the Occupational Therapist who was not much help to me and am going to give someone else a try.  So many of the well intentioned but ignorant people just delay the time to get the attention this needs so I am getting frustrated and my pocket book is being drained in the process.  I found a place that sells these bras so i may go out today and get one.  Even after getting the firm control camisole I feel better with less pain.  MaryAnn, I for one am hoping that this will not be a chronic condition but if we don't get knowledgable to help us I fear it may be. Will keep in touch here. Thanks for sharing. 

MaryAnn and Binney,

I got a really good therapist today who gave me an underarm pad and did some massage and taping.  She said it's a good thing we are working on my problem early.  When I mentioned the Belisse bra she said she thought it was a bit pricey for what it was and was not convinced it was worth it.  She said the underarm pad works wonders as does the taping so I will let you know how I progress.  She wants to see me 3 times a week.  I'm still wondering whether to get the bra and she would support this if I insisted.  MaryAnn, hope your lymphedema is improving. 

Erica, I agree it's too pricey. Here's a thread from the Lymphedema board where lots of women listed their favorite bras and camis to use for gentle breast compression. Maybe it'll help:

http://community.breastcancer.org/forum/64/topic/707409?page=1#idx_13

Hmmm. Not sure the link works. If not, try pasting it into the web address space. And if that still doesn't work I'll try again!

So glad your therapist visit was so positive!

Binney 

MaryAnn, I am concerned for you. I think you need look for treatment now and not wait.  My therapist told me this morning that if this goes untreated for too many months the tissue can change and begin to harden.  So the earlier you get treated the better your long term prognosis.  She said to check out Vodder therapists online and that you could search by state to find a licensed therapist in your state.  The pad she gave me is pretty big around 18 " long and 4 or 5 inches wide it being wider at one end than the other.  It is made up of rolls so it is textured.  She taped me again today and did the massage which is so far the only relaxing thing I've experienced in this breast cancer journey.  The exercise sheet she gave me outlines simple exercises and also talks about the formulas for getting effective heart rates.  Walking is one of the best exercises.  Anything with weights should be low weight and start out without too many repititions.  You should not experience any burn factor--all reps should be without straining. Gave me some handouts which I have not fully digested yet.  Swimming is the other thing that is great, light weight aerobics, and bicycling also OK.  The MLD (manual lymphatic drainage) massage is very relaxing and you really cannot do this for yourself (although some say you can, my therapist thinks otherwise.)  I think you need someone to help you with this.  If you want I will ask her on Friday where you can get this kind of underarm pad.  

And here are a couple of other sites that'll give you lots more fully trained therapists in your area:

Therapist Locator: www.mylymphedema.com  Click on the Therapist Locator, then follow all the links. Two are listed by state and you can find them right on line. The other two ask for your zip code and email address, and they'll email you a list of names promptly.

Lymphology Association of North America (LANA): www.clt-lana.org The LANA is a licensing organization for lymphedema therapists that requires full training and at least a year's experience.

MaryAnn, I agree with Erica that you should insist on an evaluation now, not wait for a month. Lymphedema is staged, just like bc is, and it progresses as Erica says with internal damage to tissues. A well-qualified therapist will be able to tell you right away if it is lymphedema or not, and either way the visit will be helpful to you. There are other schools besides Vodder that train excellent and certifiable therapists, so don't limit yourself to those who are Vodder-trained. The web sites above all involve fully trained therapists, and controlled studies have shown that the therapists from all those schools are equally effective. (There IS a good bit of competition among the schools though, as Erica is finding with her Vodder therapist! )

Erica, be sure before your therapy ends that your therapist teaches you self-MLD. It is true that for the active (therapy) phase you need a therapist to do the massage, but when that phase is completed you'll move into the maintenance phase, which simply means you'll have to maintain control of the swelling yourself, and for that you'll need to know how to do the self-massage technique for yourself.

Here's a good reference book that can help with both exercise and massage, and it's a boost emotionally too because there are quotes from lots of women with lympredema about their experiences: "Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing" by Burt and White. It's available on-line, by order at any book store, or from the National Lymphedema Network, www.lymphnet.org.

MaryAnn, good for you girl!  I get MLD 3 times a week now and i can tell you this is the first "therapy" that I have ever received as part of my cancer treatment that is therapeutic.  It is very relaxing (maybe just a bit painful) but hoping as time goes on and my tissues get used to this there will be less pain.  My therapist spends quite a bit of time working my scar tissue.  Now she has me on a schedule where I see her for 3 days a week and another therapist 2 days a week to teach me exercises.  I look forward to going for this unlike my other doctors.  Here's hoping you find a good therapist, you will know if they are right for you.  If you have to try more than one that is better than sticking with anyone you have doubts about.  Beware of any therapist who does not want to touch you as this is real hands on work--throwing a bunch of educational paperwork at you is not what this is all about.

MaryAnn, my therapist says breast lymphedema is more painful than arm.  Mine is painful too.  The first days of wearing my arm pad were more painful.  Now I am adjusting.  I like the fact that I am getting therapy through rads plus education.  I really don't expect to get rid of this until after radiation and I get a chance to heal.  But the massage is wonderfully relaxing (I am actually a massage therapist myself)...so this is a real treat that I look forward to. My therapist has me scheduled for 5 days a week now--3 for massage and two for exercise.  I think it is important to do something that feels good.  God knows we have had our share of pain and if it feels good it must be good for us. I think for me the important thing is not so much to get all the fluid out but to keep it moving so it doesn't just settle in--exercise is very important too.  I am glad you are getting help.  At least for you they will be able to actually tape your breast which is very helpful--since I am getting rads she tapes all around it but does not tape the affected breast. Take care and check back to let us know how you are doing.

Hi Erica, I didn't get a therapist because all of a sudden the swelling disappeared!  I was fine for a week or ten days and now the swelling and soreness is back again. I'm not sure what to make of it.  So, I guess I'll just go ahead and line up an appointment.

Hi Erica,  I'm going back to my radiation oncologist this Wednesday and am going to ask her what she thinks.  Some days, it looks like the swelling is gone, then it comes back.  Also, I noticed yesterday that my forearm on the side where I had the surgery is bigger than my other forearm.  I measured and got a 1/4 to 1/2 inch difference.  But the top of my arms are the same and my hands look the same.  I sure hope its not lymphedema in my arm but I don't know what to make of it.  I'm glad you have a therapist you like and that you enjoy the sessions ... we deserve a break, huh?

Saw the doctor today.  Have 5 more whole breast rads and 8 boosts left and I will be finished!  I'm so excited over the prospect of winding down this journey and having less time with doctors!  I'm thinking of some major way to celebrate the end.  Hope all is well for the rest of you.  You will get through this--just one day at a time and easy does it!

 Hugs, 

E