Colorectal cancer and lymphoedema

Hi Trillium58,

Thanks for getting in touch at what sounds like a very difficult time for you. My name is Ursula and I’m one of the cancer information nurse specialists on the Macmillan support line.  I see that you’ve joined a few of our forums.  I really hope you find them supportive and helpful.  

I am sorry to read that your colorectal cancer has returned, and spread to your lungs and para aortic lymph nodes, with the next steps being chemotherapy. It sounds like you have been experiencing some difficult and challenging symptoms over the last month, and you say, when you felt things couldn’t get any worse they have.

As we are independent of the NHS and do not have access to medical records, we are therefore unable to offer personalised advice or say what is causing your symptoms. We would always recommend contacting your GP, NHS 111 or your colorectal team with any new, changing or worsening symptoms so these can be appropriately assessed. Do also monitor your urinary output to ensure this is not affected by the new swelling in your genital area.

The lymph nodes are part of our body's drainage system. If you have had lymph nodes removed, this can affect the natural circulation and drainage of tissue fluid from that side. If your symptoms are caused by lymphoedema, you can ask if your team can refer you to your local lymphoedema service or specialist for assessment. They will be best placed to advice on what might help at this time, including any exercises, special compression garments or massage/drainage.

It is not uncommon to have many different emotions when coping with cancer. You may feel uncertain and frightened about the future. Or angry and sad about your situation and the effect the cancer is having on you and those close to you.

Please remember, there is no right or wrong way to feel at this time. Difficult feelings usually become easier to manage with time and support from family, friends and healthcare professionals. Please do reach out and see what support your hospital can offer at this time and explore the support we have here at Macmillan and also Bowel Cancer UK. The cancer care map can also help identify any local support services in your area for both you and your family members.

 If you would like to chat over this further by giving our support line a call, we would be happy to hear from you. We often find we can explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed.

I hope this has been helpful, but please don’t hesitate to get back in touch if you need 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/JH

Last night the swelling in the penis started to go down. By this morning it has almost gone but this afternoon 4/11/ 25 1340pm I noticed it has returned. This might be related to the two ultrasounds on my leg last week where the operator applied pressure in the left groin area or it could be changes in  peri-aortic cancerous lymphatic drainage. The left had side of my groin in the pubic area has veins showing and is swollen. I’ll have to wait and see if the swelling starts shrinking. I am wondering if there is something that triggers it?

Thank you for your reply. I am Sharon, one of Ursula’s colleagues and one of the nurses on the Macmillan Cancer Support Line. It sounds like you are going through a lot at the moment, it must have been quite a shock for you getting the news about the lung and lymph node involvement and the need for chemotherapy.

As Ursula mentioned, we can’t make a diagnosis here on the support line, so it is vital that you contact your GP, NHS 111 or your hospital team as soon as possible if you haven’t already, so your symptoms can be properly assessed.

We understand it can be daunting talking to healthcare professionals about genital swelling, but please be assured it is not uncommon, and it is something they are used to dealing with. If you want to discuss it with us first, please don’t hesitate to call us.

Your periaortic lymph nodes are in your abdomen, so it is possible that there are changes in your lymphatic drainage due to swollen lymph nodes causing swelling (lymphoedema) in your pubic area and leg, and (depending which nodes are affected) this could also be contributing to penile swelling. The Lymphoedema Support Network have a helpline, information and several videos on self-lymphatic drainage and exercise, but it is important to get a proper assessment before attempting any form of self-treatment.

You know where we are if you need us.

Kind regards,

Sharon

You can speak with the Macmillan Support Line team of experts by phoning free on 0808 808 0000m 7 days a week, 8am-8pm

I was not that surprised about my lungs. A month ago I was running 4.2 miles every week. The last run was extra hard including the exercise bike and weight lifting on other days which is now things of the past. The worst thing I could do is go to casually and sit in those hard chairs for hours. That really inflames the lymphoedema and increases abdominal pain. The colorectal team know about the genital swelling. When I saw the consultant on Monday he advised I rest with my legs raised above my hearth. This brings down the genital swelling. I now have an oncology appointment tomorrow 6th Nov at one thirty. There is a Friday appointment for a flexible cystoscopy due to my history of bladder problems but am concerned it might inflame the genital swelling.