Fluid retention after chemo

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Hi. Newbie here. I got diagnosed with muscinous ovarian cancer last year, have had it removed along with a full hysterectomy, removal of appendix and some other bits. I started chemo in August and finished in December. I've just had my consultation today and received the all clear but I am holding fluid again and I don't know why.

As background, up until 2012 I had been a size 8-10 for many years with no weight issues. Ive had numerous surgeries for endo and an ovary removed for a cyst. In 2012 I fell pregnant and went up to a size 14 within 2 weeks. I continued to get bigger over a few months and lost the baby in December. At that point I looked mths pregnant and was huge. It affected my thyroid and since then I have never been a size 10. The smallest I got to was a size 14 but every time I had surgery for endo I would loose loads of fluid and go back down to a 14. When I got diagnosed I was around a 14. By the time I had surgery I was a size 18-20. I was in hsp for 2 weeks and came out a size 12. Not through being ill but by peeing for Britain and getting rid of fluid I was storing. I continued to loose fluid and therefore weight until I started chemo in August. And I am now back up to a size 18. I can put my clothes on in the morning and by lunchtime they are too tight, especially my bras. I usually have to take it off because it's too painful to wear. I explained this to my oncologist today but he basically said it's my physiology. I don't agree. This isn't normal for me. It's normal when I've got gynae problems but having been weight stable before falling pregnant, I can categorically say this is not my normal.

It's clearly not gynae related anymore and the consultant said that chemo doesn't cause odema, but I've read on numerous cancer sites that it can. I'm so unhappy with this. I can cope with being tired and looking awful like I do right now, but this yo-yo weight is really depressing.

Is there any evidence that chemo can cause odema or has anyone else had this problem and had treatment, or eventually got back to being a stable normal weight. There is no way I can stay this size forever. It's not me, it's not healthy and it's causing a lot of pain with my joints

Thanks very much

Amy C- Macmillan over 1 year ago

Hi Chavvers,

Welcome to our online community and thanks for posting your question. My name is Amy and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

We’re sorry to hear you are having such a difficult time with swelling as the day goes on and often need to remove your bra by lunchtime. This must be very challenging when you are trying to get back into a normal routine after treatment.

Oedema related to chemotherapy is usually in the lower extremities, like the hands and feet. Weight gain can be caused by some chemotherapies and more commonly the steroids that are used during this treatment. It’s unusual to have fluctuations in fluid around the tummy and chest area like you describe.

I wonder whether it might be helpful to make an appointment with the GP, especially if the consultant does not feel this is related. Also, you mention this was a pre-existing problem before diagnosis and treatment started.

Trying to reduce salt and focus on a healthy balanced diet while increasing physical activity may also help your symptoms and how you feel about yourself. You may find the information and links in our lifestyle and wellbeing after treatment useful.

Penny Brohn focuses on cancer wellbeing. It might help to reach out to others who have been though similar treatment. You can do this through our supportive ovarian cancer forum within the online community.

You can also access free specialist counselling to help with the way you are feeling. Or you can reach out to a local Macmillan Information Support Centre or Maggie’s Centre.

We often find we can help more by exploring these questions over the phone. If this is something you think would help, then please don’t hesitate to get in touch via our support line on 0808 808 0000. We are available 7 days a week, 8am-8pm. We would be more than happy to talk a bit more about your feelings and the symptoms you are having.

I hope this helps.

Best wishes,

Amy C, 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: AC/FP

Chavvers over 1 year ago in reply to Amy C- Macmillan

Thank you Amy. That's helpful. It seemed to be gynae related because it always got better after surgery, but seeing as that's all been removed and has now started again after surgery I could only relate it to chemo. It's not just my tummy and chest, it's all over, hands, feet,legs particularly my thighs and my face. I can see a change in my thighs as the day goes on and my face is really puffy when I wake up, especially my eyes. But I will speak to my GP. It could be food related I guess. It's a good job I didn't take my size 18s to the charity shop and my size 12s will have to go back in the loft

Thanks again for coming back to me

Mina x

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Fluid retention after chemo