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Topic: Who is my lymphedema health care provider?

Forum: Lymphedema —

Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Aug 28, 2021 11:16AM

NayaBean wrote:

During my mastectomy, on June 25, I had all the lymph nodes removed from under my left arm. I am aware of the risk of lymphedema because a friend and then my breast surgeon mentioned it, and I have been reading about it online. A lot of articles will give a list of symptoms, then say something like "if you experience any of these symptoms, contact your health cae provider." But I am not entirely sure who that would be! Here are the lilkely suspects (I will ask them, but hoped to get some insight here as well):

  • My primary care physician, because she is, well, my primary care physician. She is my default person to see abut medical matters.
  • My breast surgeon, who is the first doctor who spoke with me about lymphedema. She did refer me to a physical therapist for lymphedema mangement (which did not work out because that therapist is not on my insurance, but that's another story.) I have an appointment to see my surgeon again six months after the surgery, which will be in January. Although she did tell me about lymphedema in our first post-surgery visit, she never mentioned contacting her with questions or concerns about it.
  • My radiation oncologist. I am not getting radiation after all, but I am in a radiation study. (I am in the no-treatment arm.) Because of the study, I see my radiologist every couple months. I'm thinking she *might* be my lymphedema health care provider? The fact of my having had all my lymph nodes removed was one of the factors (along with my oncotype score) that went into the decision to not do radiation. So . . . maybe her?
  • My medical oncologist, who has prescribed anastrozole. She does not seem to be the person to contact about lymphedma. Bone-thinning, yes, lymphedema no (I think).
  • My plastic surgeon. Ditto; not my lymphedema person, as far as I can tell. Yet, I believe he does some kind of lymphedema surgery, so maybe?
Again, I plan to ask these doctors, but I wonder about the experience of those here who are concerned about developing lymphedema or who already have it. Which doctor do you see when you have lymphedema-related concerns or symptoms?
Dx 5/27/2021, IDC, Left, Stage IIA, Grade 3, 1/38 nodes, ER+/PR+, HER2- Surgery 6/25/2021 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 8/3/2021 Arimidex (anastrozole)
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Aug 28, 2021 11:41AM exbrnxgrl wrote:

MeredithJane,

I think it probably varies as to which doc refers to to a pt who specializes in LE. My mo referred me to my pt. I can’t see your signature line so don’t know the details of your bc however it seems as if your mo may be the one most involved with your care going forward. Can you just call your mo and ask for a referral to a pt who is in your insurance network? Take car

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Aug 28, 2021 11:54AM ThreeTree wrote:

MeredithJane - For me it was my surgeon and it continues to be that office that helps me with my lymphedema. I've never discussed it with my primary care doctor, and I found that the oncology place couldn't care less. The radiologist I saw did mention that she could be a referral source for a number of things, but I don't see them really anymore.

I had mentioned my arm swelling more than once to staff at the oncologist's office and I would show them how one arm was swollen compared to the other. The nurses there would just say, "Oh yeah, it does look kind of swollen", and that was the end of that. It didn't seem to mean anything to them one way or the other. My surgeon on the other hand, walked into the exam room one day and within two seconds said, "Looks like you've got some lymphedema going on in that arm!" He immediately said he was going to refer me to a specialist and talked about getting it while it wasn't too bad and before it gets worse. He took measurements and wrote referral and more. He continued to monitor the situation when I would see him for follow-ups. He retired and I now see the woman who has been his clinic partner for years and I told her how the oncologist's office had little to no interest in the matter, and she said, "Well we sure do here!" and she too has written referrals for me and talked to me about my sleeve, etc. when I see her for follow-ups. If I have any further problems, there is no question that it is the surgeon's office that I would contact.

I have read on here however, that for some it is the opposite and they have found their surgeons disinterested and their oncologists very concerned. It seems to really vary from person to person and place to place.

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Aug 28, 2021 01:57PM NayaBean wrote:

A quick fyi -- I just belately did a signature, and also changed my username from MeredithJane to NayaBean.

Dx 5/27/2021, IDC, Left, Stage IIA, Grade 3, 1/38 nodes, ER+/PR+, HER2- Surgery 6/25/2021 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 8/3/2021 Arimidex (anastrozole)
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Aug 28, 2021 08:34PM gb2115 wrote:

I would probably go through the surgeon!

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.6 cm ER/PR+, Her2 -. Gr 2. 2/2 nodes positive. AC/T. Age 42
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Aug 29, 2021 03:20AM Rah2464 wrote:

My MO happened to refer me to a lymphatic specialist just because I saw her first and mentioned the arm pain I was having. She is very thorough and is careful to address all issues. Otherwise, I would work through either your breast surgeon or your plastic surgeon. From my point of view, I discuss it with all my medical team because I want to increase awareness that you can get lymphedema even with a small amount of nodes removed (4)

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 29, 2021 03:37AM star2017 wrote:

Any of my doctors could write the order for pt. Both my radiation oncologist and my medical oncologist have done so.

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy 6/19/2019 Arimidex (anastrozole) Dx 5/2021, IDC, Right, 6cm+, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio
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Aug 29, 2021 07:24AM NayaBean wrote:

Thank you everyone! This was very helpful.

And here I thought it was a dumb question! Now I think it was legit.

Dx 5/27/2021, IDC, Left, Stage IIA, Grade 3, 1/38 nodes, ER+/PR+, HER2- Surgery 6/25/2021 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 8/3/2021 Arimidex (anastrozole)
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Aug 29, 2021 08:01AM - edited Aug 29, 2021 11:24AM by SpecialK

nayabean - my surgeon originally sent me to PT for lymphedema, and reason for that is two-fold - it is generally considered to be a surgical complication (or could be a radiation complication coupled with SNB or additional node surgery) and also because I was still being seen fairly often by the BS since my LE occurred so soon after surgery. I did not have radiation, so had no RO. That said, since lymphedema is a lifelong condition for most, albeit well controlled for some, I eventually stopped seeing my BS because there was no further need for any post-op checks and I had bi-lateral mastectomy so no need for imaging ordered by him, but did continue to see my MO for periodic general monitoring. So, now it is the oncologist who manages my referrals for any continued lymphedema needs. This consists of writing prescriptions for sleeves/gauntlets and inquiring about how I am doing. All measurements, therapy, supplies are handled by the lymphedema specialists - the PT and the durable medical equipment companies that provide my pump and garments. I was worked up by a microvascular plastic surgeon for lymphedema surgery to reconnect channels to help the lymph flow out of my arm, but so far I have declined that surgery even though I am a candidate. I am not ready to attempt surgery because my arm swelling is well controlled and I have not developed any fibrous aspect to my arm. I did the workup at the NCI center I go to periodically for decongestive massage therapy of my LE arm, and it included both physical exams and imaging tests. I do not have any continuing need for massage since I have a pump, but have had a few flares over the years that have required a more intensive approach for a limited period of time.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Aug 29, 2021 10:44AM MinusTwo wrote:

Naya - all my LE issues were diagnosed by my radiation oncologist. She's the one who wrote the referrals for treatment. After 4 years of sporadic treatment & massage & training, I haven't seen the PT or the RadOnc in 3 years but I know I could call her if I have a flare.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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