Monitoring

[Cheryl4677]

Hi everyone. I’m post chemo Carbo/Taxol which I finished end of August. My CT showed no residual disease in September. I’m not sure if there is a standard protocol for continued monitoring but feeling anxious that I know nothing of how my disease could be progressing. I’ve been seeing my oncologist every nine weeks and due to see them again on 15/2. My last Ca125 was 19 in December. How regularly are CT scans usually done? Are there other tests that are offered? Switching from positive to negative thoughts and finding sleep really difficult. I look at my hubby snoring away and I’m happy that he can do that. This whole surreal episode has had such an impact on his life. Everything feels on hold. Our plans for our retirement constantly being reassessed. Holidays and the active lives we had dumbed down. It’s crazy what a difference a year can make.

[Lyndy]

Hey...sounds like you are on standard protocol. I have seen my Onc every 12 weeks since completing first line treatment. They do ca125 and internal each time. I haven’t had a scan for a year.

It is quite common to feel a bit bereft after treatment and scared of the future. Maybe investigate some local support...particularly if sleep is a problem because everything tends to look bleak in the middle of the night (that’s my experience anyway).

The other thing that really helped me was to go to a gym session at the hospital specifically for cancer sufferers/survivors. It was really social and I definitely got some strength back xx

[Cheryl4677 in reply to Lyndy]

Thanks Lyndy. I’ve been trying to step up my physical activity but shortness of breath/cough limiting at the moment. Made an attempt to go swimming but wasn’t the best plan. Trying to walk when I can.

I might have more to post after my clinic review next week. On Avastin three weekly so not feeling that I’m out of the loop.

Big learning curve!

[Ossett in reply to Cheryl4677]

I finished my chemo in September and I am still getting out of breath when I walk at even a normal pace. I wonder why

[Cropcrop]

Hi, it’s quite normal to go to around quarterly check ups, then it can extend to every 6 months until such a time you no longer need to go, I’m currently on 6 monthly visits and will stay on these for a total of 6 years until I’m hopefully discharged. The CA125 is checked at each visit and monitored accordingly, if it dramatically rises or if you’re symptomatic they may well do a scan. It’s not common practice to have lots of scans unless it’s necessary as each scan exposes us to radiation which really isn’t very good for us.

Your feelings are quite normal ones post treatment, it’s as if you’re suddenly cast adrift after being on the diagnosis and treatment roller coaster but you’re not, your team are there for you at any time you may need them.

If you’re struggling why not speak to the oncology team at your next visit next week, they are able to offer help psychologically as well as physically, many of us have had issues post treatment and having somebody to listen is really good, it all seems so much worse doesn’t it in the middle of the night when our imagination goes into overdrive and we feel like we’re the only ones awake.

We’re always here for you and we have felt like you do, you most certainly are not alone in this.

Good luck for next week, let us know how the consult goes. Take lots of care love ❤️Xx Jane

[Purple-iris]

Hi

Can totally relate to how you are feeling and also feel as if my life is on hold !

. I had my last Avastin ( no 18 ) 3 weeks ago so today would have been going for treatment if continuing . Glad to be finished but worried about doing nothing to stop this disease returning as am stage 4 . Have had counselling which helps and did a fear of recurrence course through Dimblebycancercare at Guys so trying to use some of the strategies learnt . If you haven’t had counselling I would definitely recommend you investigate . As others have said it is normal to feel adrift when chemo stops and we try to get back to some form of normality .

I am having an end of treatment scan on Thursday . My last one was just over 6 months ago but I think they only did that as they wanted to keep a check on a cyst caused by my surgery spotted on my scan at end of chemo 6 months before . My CA125 was being done every 6 weeks whilst on the avastin but I think as others have said I will now be on 3 monthly checks and CA125 with scans only if have symptoms or raising CA125 .

Am lucky as feeling physically well and back to Zumba and have started Latin and ballroom dancing again which I have always loved .

Hoping after my scan results I will feel more confident but feel in limbo and swing between wanting to make the most of every day ( as I know how lucky I am to be NED ) and make plans and wanting to curl up and hide !

Sending a big hug, off dancing, always feel better after a cha cha cha !! 😀

Love and best wishes Kim x 💜

[Cheryl4677 in reply to Purple-iris]

I used to go to Zumba and Salsa classes and I aim to get back ASAP. Dancing and music and quiz nights keep me going. X

[lorraine71-Australia]

Hi, It is a normal procedure to monitoring your progress I went ever 3 months arfter my first

line of treatment.

It sound like you have had good news with no sign of residual disease with your CT and 19 is also a good marker.

I think you would have a Ct scan now only if you showed signs of any change and from your last visit, it does not sound like it.

Let us know how you go next visit best wishes Lorraine xx

[Petrolhead]

Hi

If you put monitoring in the search box you should find a couple of threads on this.

Monitoring appears to vary widely. My oncologist wanted a watch and wait. However, as I did not know the symptoms to watch for as I had never had any it was not acceptable to me. After a referral to RM it was agreed to 3 monthly bloods and 6 monthly scan. The frequency will reduce after 2 years unless any change. Many hospitals sign you off after 5 years but some like Christies can monitor for 10 years.

You need to decide what will work for you and fight for it.

Regards Fay

[Seasun36-uk]

Hi 4677 & Ossett & Purple-Iris,

I think we are all around the same stage....I finished main line treatment in September 2017. Diagnosis in March 2017 of HGS stage 4, now on Avastin 3 weekly. I asked my Onc about scans & she said they are not routine & because of the radiation they don't want to do them too often (3 years worth of radiation in one CT scan). Trouble is.....just like most of us, I had very few symptoms until the horrible ascites appeared (gradually) which was only about 2 weeks before I went to the GP! So how will I recognise any signs?! What about ultrasound scans? I know they are not as clear....I read a book by an American lady - she said they do regular trans-vaginal ultrasounds & (wait for it!!) rectal examinations (!!) BUT this is pre-diagnosis. Also in the USA they consider menstrual irregularities or post-menopausal bleeding as one of the possible signs of OC. Wonder what you ladies think?

Linda xx 🌺

[Ossett in reply to Seasun36-uk]

Hi yes definitely same times as me but I'm on avastin now, are you

[Seasun36-uk in reply to Ossett]

Yes, having Avastin this afternoon! Do you know how they count them Ossett? I've had 6 single doses but had had 4 previously with my chemo....the Registrar I saw wasn't sure(!). Linda xx

[Ossett in reply to Seasun36-uk]

I'm on my ninth you usually get 18 had mine this afternoon as well feeling ok just a little tired.

[Lizchips]

My CAT is once a year. See doc every 3 months. Never changed this time schedule, she wanted to see me every 6 months. But I said I have insurance and feel better seeing her every 3 months. I have surgery to remove fluid from a lymphocele I developed after the debulking and Herneas repair surgeries. So I have ultrasound guided sometime other scans guide needle for fluid removal. I feel I'm being seen. Twice a year I see my endocrinologist. He checks more blood work. Thyroid etc. My CA125 is 5. I was diagnosed stage 3c clear cell ovarian cancer in April 2014. Liz. Hope this helps you.