How subtle can lymphoedema be

Snookie1971 2 days ago

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Breast cancer survivor of 4 years. No signs of recurrence.

I had full mastectomy with wide margins, delayed reconstruction. They only removed 4 lymph nodes - all were clear. 18 months post mastectomy I had DIEP reconstruction and recovered quite well. Discharged from oncology and plastics for just about 2 years.

I don't have any signs of swelling in my arm. No redness.

I have always removed my wedding, engagement and eternity ring each night and put them on when I leave the house. About a year ago I had occasional tightness when wearing the rings. In March I had to remove them mid morning as my finger was turning a funny colour. Now I can't even get the rings over my knuckle. Bit upset about not being able to wear them.

I lost two and a bit stone since I stopped treatment (a lot of which I'd gained through treatment). My rings fit me even when I was at my heaviest. I've gained back about half a stone, but that shouldn't affect me wearing my rings. Rings still fit on non surgery side.

I have ever changing blotches on my back near the mastectomy sight. The seem like faint red bruises or made up of tiny pin pricks - these patches blanch when pressed. I saw the clinic who said these were not cancer or surgery related but probably pressure sores, even though they were not where my bra was sitting. They also said that I had too few nodes removed to be lymphoedema.

Does anyone have any thoughts? As I say, the symptoms are petty vague and extremely subtle.... maybe they're non existent..... you know how cancer makes you view everything as a symptom!

I've been back to the clinic 3 times in the last year to be checked out, fit it to be nothing. If hate to bother them with something so subtle. Happy if you want to comment

Thank you

Edit: given the progression from occasional tightness to not even being able to put my rings on, will this just continue to get worse? If so is there any point in getting my rings resized? Will I only end up having to resized them again?

- this was originally posted in the lymphoedema forum, but it was suggested that I post here.

Ursula- Macmillan 1 day ago

Hi Snookie1971,

Thanks for getting in touch, and welcome to the online community.

My name is Ursula and I’m one of the cancer information nurse specialists here at Macmillan.

I see that you’ve joined some of our forums. I hope you are finding them helpful and supportive.

Thank you for sharing details of your breast cancer history and treatment. I am pleased to read that you have recovered quite well from treatment and have since been discharged from Oncology and Plastics. Also, well done on losing the weight you gained through your treatment.

I am sorry to read that your rings on your surgery side no longer fit and that this is upsetting for you. It is understandable to have questions around what could be causing this and how it may progress over time.

As we are independent of the NHS and do not have access to medical records, we are therefore unable to offer personalised advice. However, we can offer general information and support with this.

Anyone who has had surgery to lymph nodes is at risk of developing lymphoedema. Whilst the risk of developing lymphoedema is less for those who have had only a few nodes removed it cannot be ruled out. It is still a potential complication which can arise even years after treatment. Lymphoedema can be subtle in its early stages and can often fluctuate, depending on time of day and weather. Some people may notice their jewellery feeling tighter before any visible swelling.

You have done the right thing by going to the clinic to have your symptoms assessed over the last year. It is important to get any new, changing or worsening symptoms checked out by a medical professional. We would suggest going back and asking if you can be referred to a lymphoedema specialist – so they can assess you and either rule out or confirm a diagnosis. Although there is no cure for lymphoedema, there are treatments that can help to control and manage it.

With regards to whether you should have your rings resized, it is important to understand what is causing the tightness in the first instance to understand how it may progress.

I hope this information is helpful, and please don’t hesitate to get back in touch if you require any further information or support.

Sending best wishes,

Ursula

You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref:UH/LA

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How subtle can lymphoedema be