How subtle can lymphoedema be

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

Thank you Ursula.

I spoke with a friend I met during treatment who I remembered had haf mild lymphoedema.   She said her symptom was that she couldn't see her tendons at her wrist on the affected arm.  The same is true of me.

I called BCN who reassuranced me that despite very subtle signs I should be seen in the Breast Clinic, but have also referred me to lymphoedema clinic (as it's couple of months waiting list).. She reviewed some photos from February of the redness to my back and thought one may show fluid.

I had my breast clinic appointment today, I have a lymphoedema clinic appointment 6th October. I explained the subtle symptoms to the clinician;  changeable redness/irritation on the back, showed how my ring doesn't fit, and how I can only see tendons on non cancer side.

She examined me and is happy there's no recurrence. She didn't seem convinced that it was lymphoedema.  She said it had been hot lately (redness dates to early February though)  and how she had rings that don't fit. (Although my rings are not fitting only on one side).

She said to keep the appointment with lymphoedema clinic. I felt she wasn't convinced there was a problem, and I didn't see any point in arguing as I am hoping the lymphoedema clinic are more receptive.

I felt a bit silly and that no one was taking into account everything I was saying. I will feel equally silly going to lymphoedema clinic, but I will follow through and try and advocate better next time.  I'm hoping that if it is lymphoedema, that the lymphoedema clinic will realise its early or sub-clinical.

Can you offer reassurance? 

Hi Snookie1971,

Thanks for getting back in touch. My name is Fiona and I’m one of Ursula’s colleagues on the Support Line.

You have done the right thing by raising your concerns with your specialist yesterday. It’s good to hear that after she examined you, she was able to reassure you that there is no recurrence.

I understand that you are still anxious about your symptoms. Keeping the appointment with the lymphoedema clinic is the right thing to do.

Please don’t feel silly about talking through your concerns and going to the lymphoedema clinic. It’s important to talk these symptoms through with the experts and that they can examine you. We would always encourage people to report any symptoms they are concerned about.

If it would help you to talk to one of our nurses, you are very welcome to do that. You can find the details at the end of this reply. We often find that talking things through can help.

I hope that the appointment at the lymphoedema clinic goes well.

I hope this information helps. Please feel free to get back in touch if you want more information or support.

Best wishes,

Fiona P,

Cancer Information Nurse Specialist 

You can also 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: FP/IY