Feeling low -lymphoedema

Hi all,

Just need a bit of emotional support as I await my gynae appointment to see if my 1b1 CC from 9 years ago has returned. The thought that bothers me most is that, if it is a recurrence, the stage must be advanced because my main symptom is lymphoedema - which only happens when the cancer has spread to lymph nodes. So I suppose either the news will be good and it will be something else, or the news will be very, very bad.

Anything you can say to get me through another week of waiting would be much appreciated!

Hi Consuelo,

I’m sorry that you’re going through this again, the anxiety and the wait I know exactly how you’re feeling right now. I just don’t wanna read and run. I’m no medical expert but from what I know, even if it’s a recurrence and even if it’s in the lymph nodes it will be the same treatment the chemo radiation as you only had your cervix removed the first time you had CC. There are a lot of ladies here with advanced cancer like me although I don’t have lymph nodes involved, I’ve read a lot of posts w other ladies that has lymph nodes involvement and still successfully treated. I hope they’ll jump in soon. The treatment is the same and is highly effective because if they need to target your lymph nodes in radiation it will be part of your treatment plan. There’s even stage 4 ladies here who had the same treatment and were successfully treated as well. I hope that will somehow give you reassurance.
It’s not long now and you will get answers. Hang in there and keep us posted. Much love. Xx


Thank you, May! I really must try to be stronger. So many people on here are going through all kinds of stuff, I need to get myself together. :face_holding_back_tears:

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Hi Consuelo,

I’m really sorry to hear about your circumstances, I am not an expert myself… to be honest I just find out about ‘all this’ on Monday when I got my results back. Im just wanted to tell you that, although we are not in the same situation, I am here if you need to talk or support… specially througth this last week of waiting.

Wishing all the best,

PS: Do you speak Spanish by any chance?

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Hi Rose, thank you for the kind words. What is your own situation?

Yes, I am not a native speaker, but there is a family and professional connection to Spanish :slightly_smiling_face:

Hi Consuleo

I’ve had lymphoedema for nearly 5 years and have read a lot about it. That doesn’t make me an expert but it’s my understanding that once the lymphatic systems have been ‘interfered with’ e.g through cancer treatment there is a lifetime risk of developing lymphoedema. So the fact that you have developed lymphoedema about 9 years since treatment doesn’t necessarily mean it’s because of a recurrence of cancer. Another possibility you have late onset lymphoedema alongside a recurrence in which case the stage might not be as advanced as you fear.

I can empathise how scarey and triggering any new symptoms are. I hope you get some answers soon.


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Thank you, Jazza. How are you doing these days? I’ve just read about your journey on your profile. Hope the lymphoedema isn’t giving you too much trouble.

Tbh, what scares me most is that nobody says ‘hey, your symptoms don’t really sound like a recurrence!’.

The trouble is, Consuelo, that we simply don’t know what it indicates - but I personally find it hard to believe that it could be a ‘recurrence’ as it is only emerging 9 years after the all clear. It would seem to me there may be other reasons for the lymphoedema, which sounds like it’s widespread for you. Incidentally I had cancer in my pelvic lymph nodes and my para-aortic lymph nodes, and I didn’t have any noticeable lymphoedema. I did have a discomfort in my upper gut after eating, which I think was the nodes. However I get other discomforts now from the radiotherapy… :roll_eyes: so there you go! As you have not had radiotherapy or your lymph nodes removed by surgery, I think what you’re suffering is unlikely to be the result of treatment - plus the 9 year gap since your op. X

Hi Consuelo

I’m good in parts and getting better (I think) at making peace with the not so good parts, thank you for asking.

My bladder is still a bit iffy but lymphoedema is a significant challenge for me but it seems I’m one of the unlucky minority in that sense.

A common theme on this forum is the fear and anxiety that creeps in when we don’t know what underlies our symptoms. Maybe we are unconsciously selective about what we hear/remember from others?

Btw I was assuming you had lymph nodes removed as part of your treatment?

One way I’ve managed to cope with anxiety while waiting for appointments and test results is some form of distraction. We’re all different but walking and cleaning has got me through some difficult times.


Hi Jacks,

You have had quite a journey!

I also have digestion problems by now, including diarrhoea and pain at top of stomach. And am so bloated! Woke up in the middle of the night with such intense pressure in lower abdomen, I was afraid I’d have to go to A&E. Then things moved around a little bit and after passing wind it got much better :joy: But the constant feeling of heaviness and pressure in lower abdomen is such that driving is becoming difficult.

I did have lymph nodes in my groin removed during the trachelectomy, as a precaution.

Take care!

Hi Jazza,

Yes, distraction works wonders. I am finding it a little trickier these days as I am in such discomfort physically, it’s hard to forget. But occasionally I manage, especially through work.

Ah - so you did have lymph nodes in your pelvis removed as part of your surgery. This may point to lyphoedema being your main problem - rather than a recurrence of cancer. Most people don’t give their lymph nodes a second thought day to day, but they are actually crucial parts of our body system.

I do hope you don’t have too long to wait before you can get some answers and a plan to make things better! X