More cancerous nodes…swollen arm

[caw517]

I’m wondering if anyone has had this problem. A couple of months ago my PET scan showed activity in multiple lymph nodes in my arm pit and neck area. At the same time my arm had begun to swell. My oncologist changed my regiment to Xeloda wanting to stop these cancerous nodes. In addition I had multiple cancerous growths all over my chest.

Since I started xeloda the growths have been shrinking which is great. But… My arm is still swollen. My oncologist says the arm will take longer to resolve. I’m not due for another PET scan but I just keep hoping my arm shows improvement which might indicate the nodes are getting smaller.

Has anyone had this kind of issue? And just to clarify … this is not lymphedema from having nodes taken out. This is on my non operated side. The nodes are all there… just cancerous it would seem.

Thanks.. Carol

[Beryl71]

So sorry to hear. My first thought was lymphodema. If the lymph nodes are cancerous, I would imagine they won't work properly. But I hope you get a proper diagnosis soon. I found the doctors pretty hopeless with this issue after my primary cancer. I was sent to a specialist at the local hospice. I now see a lymphodema specialist I found through the British lymphodema society. If you are in the UK, that might be worth exploring for advice. X

[PJBinMI]

Keep in mind that we each have our own unique cancer cells and that treatment is dependant on much more than location! I had cancer in lymph nodes near my arm pit and it was pressing on the nerves down my arm. My hand had lost strength and motor control. I had 10 radiation treatments about two years ago and that knocked the cancer cells, but my strength and dexterity are still quite poor in that hand. I'm a long timer with MBC (over 18 years), lobular E+ her2neu - that has responded well to hormonal tx. First 13 to 15 years, bone mets only. Since then, cancer has moved to block a ureter, surface of cerebellum, lymph nodes, duodenum, and most recently some in the lining of my abdomen. Seeing onc this coming week and expecting some treatment changes. I hope you will find peace of mind with whatever you and your onc decide to do!

[Bettybuckets in reply to PJBinMI]

I will be thinking of you and hope they figure out the best way forward.

[Hazelgreen]

I've not heard of swelling in the non-operated arm but believe that it is cancer in the lymph nodes that causes blockage/breaks of the normal channels of lymph drainage. It sounds like your oncologist believes that his/her drug treatment will ultimately resolve the issue. Nevertheless, if I were you, I would start wearing a lymphedema sleeve as the swelling may impact the tissues of your arm.

I think, in my case at least, the cancer ultimately "burst" the lymph nodes in my right arm so there is only drainage when the arm is greatly elevated. Originally, my lymphedema resolved with time after my 2006 early breast cancer, but returned "with a vengence" when my cancer metastasized a decade or so later.

I really hope your oncologist is able to resolve your situation for you.

Best of luck, Cindy

[Bettybuckets in reply to Hazelgreen]

oh dear burst the lymph nodes. That sounds bad… was there an option to radiate or would that have been the same outcome of lymphoedema? I hope things get better for you.

[Hazelgreen in reply to Bettybuckets]

Thanks for your sympathy, Beth! I was referred to the same radiologist at our local cancer clinic three times, and he declined to treat me every time. The last time he told me he was too afraid of damaging nearby normal tissue ( I'm not at all sure he could make things worse). There, apparently, is a surgeon in B. C. who tries to repair lymph channels but no one locally.

Lymphedema is an ongoing nuisance now that winter is here in Canada, and I cannot wear an extra layer under my winter coat. Ah well, life could indeed be worse!

I hope all goes well with you and yours.

Regards, Cindy

[Bettybuckets in reply to Hazelgreen]

hi Cindy- I hated it when lymphoedema plagued me after my surgery and was so happy it mostly cleared. But now perhaps MBC I have a big annoying neck lymph node that is annoying everyday. But onc doesn’t want to blast it… warns to use it like a canary in a coal mine. But I’m worried it will spread right down the chain. Which I’m afraid it prob will. I Have a scan in a few days snd have to hold my breath. I am so sorry that the doctor didn’t figure out a way to save you from lymedema coming back like that.

[Hazelgreen in reply to Bettybuckets]

It may be the same issue as here - the radiologist is afraid that he'll damage surrounding tissues. I did have a lump on the back of my neck I thought was a blocked oil gland and had my GP refer me to a surgeon. The surgeon mostly removed it, but , when she sent it for a biopsy, found it was cancer. I have many lumps under the skin which I assume are breast cancer metastasized to the skin.

Is it possible that your neck lump is also breast cancer of the skin, rather than another lymph node?? If I were you, I might push for a second opinion about the advantages/disadvantages of radiology or even surgery.

In my case, it was my own neglect of my health that led to metastases everywhere. I simply didn't go for annual physicals. It was the lymphoedema in my right arm that finally alerted me that cancer had likely returned. Prior to that, I was attributing my breathlessness to my need to have a bicuspid aeortic valve replaced (which I did a few months before MBC was diagnosed).

Cheers, Cindy

[Bettybuckets in reply to Hazelgreen]

Wow Cindy you have been through a lot! My hubby had the Aortic valves replacement and that is major surgery.

My lymph node had been 3cm and def is Breast cancer which was how I discovered my MBC. I did get so worried that I went to see a rad onc and he was ready that day to make me a mask and Oreo to start radiation. I chickened out and then the Verzenio finally shrunk it back down but now growing again. I am not sure if trh advantage of seeing if treatment is working will be worth it if this spreads down the lymph chain. But I have so many appt. Now dealing with vocal chord paralysis that they say is not connected to my cancer. But many on this site told me they have same thing as me from a tumor pushing on a nerve that allows speech. I think with my lobular cancer they just can’t see it yet cuz it’s is sneaky. Maybe at this weeks scan- all will be revealed.

[Hazelgreen in reply to Bettybuckets]

Do let me know, Beth. I'll be thinking about you.

[Bettybuckets in reply to Hazelgreen]

thank you will do!

[13plus]

I’m so sorry for what you’re going through. I think you need to seek help from a lymphedema specialist. Any swelling of a limb is called this and it needs to be treated to avoid it getting worse. Many doctors are very ignorant about it.

Try this resource below and also please read my long reply I just wrote before this in a different recent post about ‘wearing compression sleeves after breast cancer surgery’. I talk a lot more about this issue and in the resource below you can probably also find the list of things to avoid doing so you can help maintain it as it is now. I really hope the drugs do well for you

lymphnet.org