Sorry for the long post

[Tay100]

Hello, I’ve not posted in a while but have been reading your posts, what an amazing bunch of strong ladies you are.

I wish I was as strong as you, I’m so nervous at the moment as I’m in quiet a lot of pain again. I had my debulking op at the end of August and was told that the surgeon had removed all visible cancer. My last chemo was at the end of November.

Since January I have been in more and more pain, it feels like severe period pain if that makes sense.

I mentioned it to my oncologist two weeks ago and she sent my for a CT scan which I had this Tuesday. My CA125 came back at 19 which I think is good. My question is, is it possible to have a reoccurrence this soon and still have a lowish CA125. Or am I worrying needlessly. I’m seeing my oncologist again next week, I know that’s not long away but I’m so worried that it’s back.

I’m so sorry for the long post. Thank you for reading this xx

[Lyndy]

Sending you a hug.. it’s horrible when you feel uncertain about what’s going on. I have to say I had lots of odd aches and pains after first line treatment- so it may be that things are still settling down or I heard others say that adhesions caused pain. Whatever is going on you (and your team) need some answers.

Don’t think that you are not one of the brave ones... people who have no fear have it easy, it’s people who are scared but carry on and face it that are truly courageous and that includes you! x

[Tay100 in reply to Lyndy]

Thank you so much for your kind words and I really hope that it’s just things settling down like you xx

[Di16]

Waiting for scan results is scary, especially if you are worrying in case the beast is back. I hope your oncologist can give you some answers about why you are getting this pain & do something about it for you.

And don't think you are not as brave as other ladies. I'm sure many of us have been scared & worried at times, but we keep going. Di

[Tay100 in reply to Di16]

Thank you so much for your reply, I appreciate it xx

[bamboo89]

That reading of 19 for your CA125 is fine - up to 35 is considered normal. It might be that you have scar tissue or adhesions which are causing pain - these form within the first year after surgery, and depending where they form, can cause discomfort /pain, so try not to worry - you'll know more when you get the scan results. I know this is easy to say, but the fact is, worrying about it only makes you stressed, which isn't great for your health - the results of the scan will be the same whether you're fretting about it or not, so try a few distraction techniques to keep your mind off the worry. Which distractions you use are whatever works for you - mindfulness meditation. watching things that make you laugh, eating favourite foods, watching the plants grow or just keeping physically or socially busy are all things that people might do to manage the worry and stress.

Miriam

[Tay100 in reply to bamboo89]

I have taken your advice and been in my garden today, tidying up a little and directing my husband who has planted a few more plants for me xx

[bamboo89 in reply to Tay100]

ooh, well done - I became a professional gardener 35 years ago - but I only started gardening in the first place because I had a very stressful marriage, and I found gardening was like balm to the soul , took away all the fear and stress, once I started, I couldn't stop!

[Tay100 in reply to bamboo89]

It really is addictive isn’t it. Last year I couldn’t do a lot in the garden due to chemo and then my op. I have been pottering a little bit this last couple of weeks and being outside with soil on my hands has helped calm me. I have a cottage garden in mind, with a bit of luck and some help I may get one xx

[bamboo89 in reply to Tay100]

Long may you continue to be able to potter in the soil, because you're right, its incredibly grounding and puts everything in perspective, gives a sense of permanence about the environment and the world, whatever happens to us. I dread the day when I'm too ill to do any of it myself, not even plant up a small pot, its not the same telling someone else what to do. Wishing you well for the result... and a solution to what's causing the pain...

[thomas62]

Hi Tay100,

I concur with Lyndy and Di so don't think I can add much to their comments. However, your CA125 is really good - within normal range - don't forget this!

[delia2]

Hi. I’m in a similar place to you-had surgery at end of August but didn’t finish chemo til January 18. I had a PET scan Jan. 24 and was NED. But for the past 5 weeks I have had a nagging pain on my left side and now on my right. I haven’t told my dr. I have an appointment on the 23rd for a 3 month checkup. My CA 125 is not a good marker. Yours sounds fine. I hope we both have scar tissue!!!!! I’m trying to make the most of my remission. Keep us posted! Xoxo

[Tay100 in reply to delia2]

I will keep my fingers and toes crossed for you! Big hugs xx

[Tay100]

Thank you all so much for your kind words and advice it has really helped. I’m going to try and stay as busy and positive as I can. Hopefully it will be good news ( scar tissue) on Monday xx

[Trathi]

Hi Tay100, sorry you are feeling this way, I don’t think there is anything I can say or do to help you. It is awful when you have finished everything then get pain, but I am pleased you have seen someone, and are going to be seen again soon. I do know when I got pains after nearly a year, I too had a Ca125 and CT scan, which showed spread to my spleen. So I guess having a reassuring blood test and CT scan is initially a good thing for you. We do get awful anxious when we pains and cannot define where they are coming from. I hope your next visit to your oncologist helps to further reassure you. Sending lots of love 💕 hugs 🤗 and positive thoughts to you xx

[Tay100 in reply to Trathi]

Thank you for your lovely reply, love and hugs to you to xx

[Serengeti]

I was having pain in my lower abdomen like a UTI five months post op , had blood test which came normal and ultrasound sound as well. Pain resolved by itself

[Tay100 in reply to Serengeti]

I have my fingers crossed that it’s nothing much and hopefully like you the pain may resolved itself for me xx