When NOT to do MLD?

JO-5 - I am sorry to hear of your troubles.

Hopefully one of the LE ladies will be along soon with an answer.

I just wanted to say thank you for posting the statistics at the end of your posting.  Seeing as I seem to have a few lingering side effects from radiation (LE of the breast) the thought of angiosarcoma from radiation really scares me.

May I ask how this was diagnosed?

Jo, what a shocker! We're all warned about the possibility, but as you say, it's so rare. That must make you feel pretty lonely, and I'm so sorry. Just really glad the surgery was so successful--wonderful!

You're right--I for sure don't want to steer you wrong on this, so I went and gave Kira a shout-out and hope she'll weigh in soon. In the meantime, if it were me I'd go for the MLD. The general guideline (conservative, because there's no real evidence one way or the other) is not to do MLD directly over an area of active cancer, but this is obviously not the case for you now. In any case cancer spread is far more complex than just encouraging sluggish lymph flow--in fact, if we didn't want to move lymph fluid we'd have to sit perfectly still and not move a muscle! Not real practical, and lymph flow is important to our immune systems anyway. So, guarded opinion is, go with it. Gently, of course. 

And of course there's always chocolate…

Please do keep us posted.

Hugs, prayers too,
Binney

Ah, Jo, your strategies sound really smart! The Lebed should really help, and it's gentle. And once you're thoroughly sick of the narration, it works just as well with the sound turned off.   ;-)

Good on the chocolate!
Binney

Jo, so glad you caught this early! I had to do a bit of research as I wasn't familiar with angoisarcoma and what kept coming up was that secondary angoisarcoma of the breast is associated with Lymphedema.

The concept of MLD spreading cancer has never been proven.

I personally think that you should treat the Lymphedema, with mindfulness of your excision scar.

The more I read, the key to a good prognosis is catching it early. It sounds like you have a great doctor, and kudos to you for knowing your body and being aware of when to raise concerns.

This is rare, but if it's associated with Lymphedema, and there's increased breast LE with SNB, there really needs to be more awareness. Thank you for informing us.

I didn't find a second category of lympho angoisarcoma, just that secondary angoisarcoma is associated with LE and rads.

Wishing you all the best, and let me know if I can help.

I'm giving a talk on LE in a couple weeks, and this is going in it!

Kira

Jo, I looked at the medical literature, and I couldn't find that angiosarcoma only comes from untreated LE--the risks for secondary angiosarcoma are LE and rads. And the average latency period is around 5 years, but can occur both earlier and later..

The consent form for rads always says "secondary cancer" or "another cancer", but it never details what patients and doctors should be looking for. 

Here are the references I found, on a quick search: 

Medical review article, short, from 2008

http://www.ajronline.org/doi/full/10.2214/AJR.07.2909

This article divided angiosarcoma into LE associated and rad associated, but clearly both can be present

http://sarcomahelp.org/angiosarcoma.html

From the National Sarcoma Site

What causes angiosarcoma?

In most cases, the cause of a sarcoma is unknown.
The most widely known cause of angiosarcoma is lymphedema, the swelling
of an area of the body due to the collection of fluid. Angiosarcoma can
also occur due to radiation exposure or treatment, and angiosarcoma has
been associated with carcinogens such as vinyl chloride, arsenic and
thorium dioxide.

What are the symptoms of angiosarcoma?

Angiosarcoma can present in many different ways. It can look like a
skin infection, a bruise or a lesion that does not heal. It may have a
violet color, and one should be particularly concerned if such an area
arises in a site of prior radiation therapy. It might also present as a
soft lump that can be felt or seen. Deep-seated tumors may go unnoticed
until they begin to affect surrounding tissues and organs.

From eMedicine:

http://emedicine.medscape.com/article/276512-clinical

Risk factors

• Toxic exposure or radiation therapy
• Other carcinogens (eg, bone wax, Dacron, metal bodies)
• Lymphedema

Again, thank you for letting us know, and although rare, it's something we should know about, so we can seek early treatment. The eMedicine article commented on how the diagnosis was frequently delayed.

Kira

I can't help feeling angry at my RO for:

Giving me the impression that if radiation did cause a secondary cancer it would be years and years away, 

That it would be easily treated and 

For not educating me about what to look out for and 

For not recommending any ongoing treatment when I complained of pain and swelling in my breast months after radiation finished.

I am grateful to you ladies for educating me.

I now understand that I should do as much as I can to prevent lymphedema in my breast - not just for my present comfort but for my future health.

Its shocking how ignorant the medical profession is when it comes to lymphedema.

Thank you ladies for all your input.  This thread may actually save someone's life.

Jo, think of it as life-saving rather than fear-mongering. We need the information, so it's all good. 

I want to mention here that redness is not uncommon in breast LE, an inflammatory reaction that can usually be treated with MLD to move the irritating stagnant lymph fluid out of the area. And of course it is also one of the symptoms of cellulitis. So it's always something that needs prompt attention, definitive diagnosis, and treatment. Or, as your doctor is doing, keeping a close eye on it.

I just got a notice from the local face-to-face LE support group (not close enough for me to attend regularly). Their June meeting will feature a radiation oncologist speaking on the subject of "Skin Health Related to Cancer-Related Lymphedema." I emailed to ask if they'd be discussing this as part of the presentation. An important subject, but a difficult one to handle well. We shall see.
Binney

JO-5 - If the annual mammogram aggravates the spot would your doctor and insurance be prepared to do an MRI instead?

There might be medical grounds for not doing the mammogram?

I have refused to do a mammogram - my cancer did not show on the mammo and I will not risk squashing my tender boob!

When the doctor saw I was very serious about not doing a mammogram ever again she said she would request an MRI when its time for my annual checkup.

Maybe its an option for you?

Just heard back from the support group folks, and the radiation oncologist will plan to address this subject (Wow, thank you!), so I'll try my best to attend. If transcript or recording are not available I'll take good notes. Won't be till close to the end of the month, though.

Be well!
Binney

J0-5 Thank you for your experience and very interesting subject. I always think that docs play down the part about radiation effects and keep us in the dark so it is nice that we can band together and learn. Even though Angio is a low contracting rate we still need to be vigilant like your were because we are our best advocates. So wise that you got to know your body. Congrats on the clear scans. Go have chocolate icecream.

Jo, I was thinking of topical benadryl, but I wouldn't suggest doing anything like that without talking to your doctor first. If it's an inflammatory response from the LE, then something like that might help. Just a thought.
Binney

Jo, I haven't tried it, but the brushes they've posted pictures of look pretty intimidating to me. Skin integrity is absolutely vital, so anything with the potential to cause micro-scratches creates a risk for cellulitis. Not worth it for me.

That said, I can see where it would be more workable (and easier too) than self-mld. The point is that we're all different, so for those who find it works and it helps with making self-care doable, it's a good thing. I'm thinking a fairly wide, very soft (and brand new!) paintbrush might be worth a try if you're interested. The bristles are designed not to dig in (so as not to make streaks on the wall), and there are enough of them to exert a gentle force that might move the skin very gently in a way that's similar to our hand movements when we do mld.

Sorry, that's not much help!
Hugs,
Binney

Cookie, keep us posted if you try it. Strictly conjectural--never tried it myself, just don't like the look of the other brushes. 

Jo, that's a good call--skip the brush! I'm right there with you looking forward to benign, but sorry more biopsies are called for. Waiting rots.

Hugs, prayers,
Binney

Jo, thinking of you over the weekend, keeping you in my thoughts and prayers. What a gift it is to have a doctor who will call you as soon as they know--yes!
Binney

JO-5 - What a relief.

Indeed cause for celebration.

And thank you again for bringing this important information to light.

Hugs