Danger of lymphedema in other arm after double mastectomy?

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Nitocris
Nitocris Member Posts: 187
edited June 2014 in Lymphedema

Hello Ladies,

I recently joined this Forum and I am really glad I found you!.  I live in Scandinavia and English is not my mother tongue, so I am sorry for the mistakes I might make.  I developped lymphedema in my left arm a year and a half ago, after mastectomy and lymph node dissection. 11 nodes were taken away and only 1 was positive.  I had 6 rounds of chemo-therapy and 25 sessions of radiations.  IMy lymphedema started after the fourth chemo.  Like for many of us, the surgeon did not say a word about the dramatic consequences this surgical procedure could and would  have on my life and there was no information after the operation about risk prevention.  I had a prophylactic masetectomy on my right breast 7 months ago and what should have been a "routine" operation turned out to be a disaster:  inner hemorrhage,  a second operation and a big oedema on the right side of my chest. which took months to disappear.  Now, I have a rather big reddish and swollen scar on that side.  Even though the surgeon said, there should not be any problem with lymph drainage on that side, I have noticed that drainage is not as efficient as it used to be, probably due to the big scar, scar tissues and the oedema...    I have received MLD regularly since my lymphedema started, but now I am very worried because I came across an article in which it was explained that lymph should not be drained to the opposite side, even though nodes are intact.  One of the therapists I was seing has drained the lymph across the chest to that axilla!  At the time, I did not know that it was also possible to develop lymphedema in the other arm.  I am so worried now . I am checking every day for signs of possible lymphedema.  So far, It seems allright, but as it sometimes takes a long time before you notice anything, I can't get rid of that idea!   Do some of you have the same problem? Have some of you developped lymphedema on the other side with your lymph nodes intact?. Have you noticed more pooling of lymph in your trunk because of bi-lateral mastectomy?  Thanks for your answers

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Nitocris--you explained it perfectly. One of our experts on this board, Binney, developed lymphedema after her prophylactic mastectomy, and I do understand your concern about moving fluid to the prophylactic side, if it's already compromised. Perhaps they should move as much down to the inquinal nodes as possible--can you ask the person who is doing the MLD about it, and raise your very valid concern?

    I'm going to ask Binney to reply as she has more information about this. 

    As I'm thinking about it, another woman who posts developed lymphedema on her prophylactic side.

    It sounds like your surgery created a lot of problems--and lymph doesn't flow through a scar.

    Kira

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited February 2011

    Nitocris,

    You have excellent English!  I had a bilateral mastectomy, and have stage 0 lymphedema.  I do Manual Lymph Drainage in two parts.  I clear the neck nodes and drain my arms up to them.  I clear my inguinal nodes and drain my sides and front down to them.  You have asked an important question, and I hope your therapist will look at other options with you.

    I also hope Binney will weigh in, as she is really one of our main LE gurus!

    Dawn 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Welcome, Nitocris!

    I'm so sorry for all the worries that bring you hereFrown, but I'm glad you found us. Like you, I had a prophylactic mastectomy on the other side, no nodes removed from the axilla, and I developed lymphedema on that side also. Dawn and Kira really covered the subject, but I'll just chime in with a couple of thoughts.

    Dawn's description is the same as my MLD routine: above the scars I massage toward my neck, below the scars and on my side and back I massage toward the groin. Your therapist should be able to help you make those changes to the MLD.

    From your description it does seem likely that you have some lymphedema on the prophylactic side. The redness that is still hanging on there may be an inflammatory reaction to the stagnant lymph fluid, and swelling is hard to measure, even with your eyes, after a surgery that changes the whole area so drastically. After surgery the scars can block the lymph flow, and delicate lymph vessels have been cut and may be unable to repair themselves with so much scar tissue and the oedema that resulted from the surgery.

    Are you using arm protection (sleeves and gloves or gauntlets) on BOTH arms? After bilateral mastectomies both arms are at risk, so wearing well-fitting compression garments when exercising or traveling or doing anything strenuous may help keep them in control. Neither arm should be used routinely for blood draws, blood pressure, or IVs. (Blood draws and IVs can be done in the foot, and blood pressure on the leg. It sounds worse than it is!Laughing)

    Here's an information page about chest lymphedema (it's called "truncal" lymphedema), with some ideas near the bottom of the page for bras, camis, binders and shapers that can help:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    In answer to your question about swelling on both sides of your chest, I have to say that it's no harder to treat both sides of my chest than it is to treat just one. The MLD takes longer, of course, but anything you wear for compression on one side works for both sides, whether you have lymphedema or not, so there's no extra compression garment problems.

    Nitocris, your English is wonderful, but if I've said anything that you don't understand please tell me and I'll try to explain it better. We're all here to help each other, so do let us know how you're doing, and how we can help.

    Gentle hugs,
    Binney

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  • Nitocris
    Nitocris Member Posts: 187
    edited February 2011

    Hello again Ladies, 

    First of all, thank you for your replies. Thank you Binney, I understood everything.   It is a great comfort to be able to connect with women who have the same problems and learn from them. The information that I got varied from one therapist to the other and it was very difficult to have clear answers.  I have seen 3 therapists so far, and every one of them had a different answer.  One said that there was no danger of developing LE on the other side because I still had all the nodes;  the other said that there might be a possibility of developing it and the third said that she had never heard of anybody developing it, but she did not have enough knowledge about it.  Not much help!  Furthermore, none of them mentionned the possibility; if I had not asked the question, I suppose they would have continued draining on that side.  So, I decided to find the answers by myself. I ordered practically all the books published in the US about Lymphedema, spent literally hundred of hours on the internet reading articles, reports,  whatever was written about it.  The more I was learning, the more I realized that  indeed, there was a real risk of having lymphedema on the other side.  I did that operation trusting the surgeon who said there should not be any problem and now here I am wondering if I did a terrible mistake! If I had known that before, I would never have gone through that procedure.   But, now there is no turning the clock back and I have to find solutions and not let the anger upset me too much.  Is it normal that I feel so angry?. 

    I do self-massage, regular decongestive exercises as well as deep breathing exercises.  I am very meticulous about risk prevention (maybe too much), I wear my compression sleeve on my affected side and the glove when I notice a bit of swelling on the back of my hand.  As a matter of fact, I have recently tried kinesio taping on my hand, and it definitely works!.  It drains better than the glove.  I found a therapist trained in kinesio taping and I would like to try it on my chest and also from the armpit down to the inguinal nodes on my affected side.  I am also thinking that maybe it could help on the side where I had prophylactic mastectomy as a "preventive" measure.  Putting tape from  under the scar to the inguinal nodes and also from above the scar to the Terminus to stimulate lymph flow to these areas. The therapist said that I could also try this next time I fly.  Has any of you tried that?

    Since the prophylactic operation, I have had several controls at the Hospital and local Health centre.  Blood tests and blood pressure were done on that side! Don't they know these things?

    Thank you Binney for your tip about clearing from above the scar towards the Terminus.  So far, I was clearing across the chest towards the unaffected side, but I am going to change that.  I have one question about my scar.  The doctor said it was not keloid, but it is a hypertrophic one.   I have put silicon gel on it for the last 4 months, but I don't see any difference.  I am planning on trying a scar treatment called LPG therapy. Improvement of the scar and surrounding tissues, might help a bit with the lymph flow in the area.  Apparently, it is also used for peripheral lymphedema. Is this method known in the US?  Has anybody tried this method?  I found an article from the European Journal of Lymphology on the subject.

    http://www.lpgsystems.com/cosire/pdf/publications/chapitre-3/rub3-pub-c3.4-B.pdf

     Well, I have to stop for now.  I have so many questions, that I could stay logged in for several days.  Best regards from snowing Finland.

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  • moogie
    moogie Member Posts: 499
    edited February 2011

    I got LE on my Prophy side ( had no surgical complications and no recon issues) after a plane flight, properly compressed. I think I was just one of those people who needed every node  to operate well. In my case I don't think there was anything I could have done to avoid it: I did everything recommended.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited February 2011

    Nitocris,

    It is perfectly normal to be so angry.  Many of us are, though we often try to let it go.  Sometimes it just keeps coming back.  

    Dawn 

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