I’ve joined this community because my beautiful mum was diagnosed with stage 3A ovarian cancer in Jan 2019. Completion surgery to remove all visible signs of cancer done and CA125 feel right down to 24 after surgery. It has continued to go down after each chemo and is currently at 13.
She had her last chemo on the 5th July at the mount vernon cancer centre, Hertfordshire, uk. She is due to have her bloods done again on Thursday (4 weeks post chemo) and then to see the oncologist on the 15th August.
My question is, what happens at this appointment? When will she get an end of treatment scan? How do we know the chemo has worked?
I would really appreciate some advice. Having read some of these blogs I have the utmost respect for you all. I know what my poor mum has gone through and I hate this disease. Hey
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I assume that if she has had treatment at Mount Vernon cancer centre that you are in the US? If so then protocols are different in the UK. Most but not all ladies here are on Uk treatment pathways.
I am sure one of our US ladies who post here will be able to advise. On reading the American forum Inspire (are you on there?) I gather a lot may depend on the insurer provider.
I will leave it to our experts on US healthcare to be more informative.
I had a scan which was ordered at the post treatment appointment. I had been for a second opinion at the Royal Marsden and my hospital followed their recommendations. My oncologist only wanted to watch and wait which seems to be the new protocol for a lot of places. A lot of oncologists seem to be reluctant to order scans on a regular basis.
Certainly a post treatment scan to see what is going on is to be preferred.
Personally I would bring questions about future monitoring. Would it include regular bloods and or scans?
I don’t think you mentioned oc type or stage and grade. This can make a difference to what is next. Also if your mum’s CA125 is a good marker for her. There does seem to different ideas between hospitals and oncologists.
If you mention type and stage other ladies with similar might be able to say what happened for them. Mine was mucinous oc so would probably be different to your Mum’s.
Thanks fay. When did you have that scan? How many weeks/months from your last chemo?
Stage 3A serous cancer, I’m not sure of that actual name. It was grade 3 - fast growing.
The oncologist isn’t the friendliest if I’m honest. He said that the scan would be a base line to see my mums new norm but I’m not sure when she will have the actual scan and how long the results take from that scan?
She will be monitored every 3 months with bloods (ca125) but he is more concerned about symptoms which I suppose is better. Doesn’t want to scan every time due to the radiation which I respect
My mum has a trip planned for the end of October and we’d like to get answers back from this scan. The CNS said it would be 2/3 months from end of treatment but curious now long others waited.
I had a scan halfway through treatment and then one about 2 months after. As the scanners are very busy at my hospital (and I expect in every hospital) it was not considered to be urgent. It takes 2-4 weeks after the scan to get the results depending on staffing levels holidays etc. I am lucky in that I am able to get scan results emailed to me. ( I have a secure NHS email address). Usually you would then have to have an oncologist appointment to discuss the scan results. They may make the next appointment when you go for the post treatment appointment. You have to hope that the scan results are available by then. No certinties unfortunately. Everything seems to depend on everything else. Sometimes the cancer nurse specialist can get the results for you if the oncologist permits it. Even if the oncologist puts “urgent” for scan results it can take a couple of weeks as it still depends on the radiologists being available and how many urgent requests there are. Sorry to be a little negative but staff shortages and working overload is the norm.
Thanks Fay. It’s good to have some kind of time line in place either way. It’s the waiting and not knowing how things ‘work’ that adds to the worry and stress.
Hi, I know Mount Vernan, used to live in Edgware a long time ago.
Mostly they do a scan about 6 weeks after finishing chemo, but I was only 1c, after that I had bloods inc CA test every 3 months up to 2years after chemo, then every 6 months until now I hope to reach the 5 year marker, then it is every year.
I also have a gynae appointment with an internal to match.
My last scan was 6 weeks after my last chemo, none since, it’s been down to bloods, CA and gynae exams. But of course down to discussion about how I am doing.
It also depends on staging and type of cancer, we are all different.
Thanks Carole. We have an appointment at the 6 week mark but no scan has been booked that we know of. Did you have details of the scan appointment in writing? We have nothing except to have bloods drawn this week and we think it’s an oncologist appointment in two weeks. We don’t have any paperwork, it’s all verbal.
I finished my most recent line with of chemo the middle of May. I saw my Oncologist a month later. At this appointment my blood results were reviewed, I had a physical exam, asked to report how I was feeling and future management was discussed.
Unfortunately my bloods showed a significant increase in my CA125 numbers. Due to this a scan was arranged and I will get the results tomorrow. For me my CA125 is a good indicator of disease activity and it is this plus any new symptoms which indicate whether a scan is appropriate. If my CA125 had not increased then I doubt whether I would have had a scan just yet.
Hi Julia. Sorry to hear your bloods increased. I hope tomorrow goes well.
The oncologist said my mum would have an end of treatment scan to see what the new norm was. She hasn’t had once since November and 2 months before surgery.
It sounds as if your mums treatment has gone really well. Did they confirm they were able to remove all visible signs of disease after her surgery ? If her CA125 has gone down to 13 it sounds good.
The protocols at hospitals can be different so you could probably ring your mums CNS to check whether she is meant to have an end of treatment scan before her oncology appt and ask her to arrange.
I’m at Guys, but was stage 4, had a scan after my surgery to confirm I was NED ( no evidence of disease ) and a scan at the end of my chemo before I started maintenance Avastin. Then another scan after a year of Avastin.
At my end of treatment appt we discussed my blood test results, C125 and my scan and any side effects I was suffering and what monitoring I would have. She also examined me (external) . I asked for referrals to physio and counselling at the end of chemo appt.
I would assume most teams would probably want a baseline scan at the end of treatment so they have something to compare to at a later date.
Has your mum had a BRACA test to confirm if she has the BRACA gene mutation. If not she needs one ASAP to see if she should be on Olaparib as it’s now available for first-line maintenance if you have the gene.
Hopefully some ladies who have had treatment in Mount Vernon will be able to advise you as to their end of treatment protocol.
I hope your mum continues to recovery after her treatment and you too can begin to relax and have some time to enjoy the summer. I look after my mother who has various health issues and know how anxious and exhausting it can be.
My scan was about 4 weeks after my last chemo from what I can remember and they had the results by the time I went to my appt. Normally takes 2 was to get the scan results.
Hi Kim. They did say all visible signs of disease were gone and the ca125 is going down.
I did speak to the CNS yesterday who said 2/3 months for a scan but a letter to my mums gp, with my mum cc’d, said an end of treatment scan would happen 6 weeks after chemo. I will ring again tomorrow and get her to actually check the paperwork this time.
We are waiting for the genetic testing. Bloods were drawn for this beginning of May, so the 3 months are approaching. How long did you wait?
I’m glad I’m going into this next appointment with that information so thank you very much!
The oncologist thinks I’m a bit of a know it all and I suspect I ‘annoy’ him with all my questions. We certainly gives me that impression anyway. I’m not one to shy away from asking regardless.
That’s great, if she’s NED after surgery and her C125 has come down it all sounds good. I know it’s frustrating but as long as the Scan is being organised I wouldn’t stress too much if it’s taking a little longer, as long as she is feeling ok.
My BRACA test took ages to sort but once I had the genetic counselling and the bloods it took about 12 weeks for the results. Im not BRACA. I’m hoping they will now start sorting the test earlier for patients as they determine if they go on the Olaparib.
My mums dr is used to me now. He asks if I’ve got my list with me !
Best wishes and I hope your mums appt goes well. Kim x
For me, I am in Bath at our Royal United Hospital, which has mostly been excellent. We are close to Bristol, so our two teams work together - and well.
My Oncologist is a gorgeous Amazon of a woman and easy to talk to.
I was also assigned a CNS, a specialty nurse to help with questions and appointments, etc. I get along great with her too.
After de-bulking surgery and the last Carbo/Taxol Chemo Infusions, I had a scan before my final meet up with my oncologist.
I was all clear. No visible sign of disease and my CA-125 was 11.
I too am high grade serous, stage 3.
I also lobbied for the BRCA Mutation genetic test, but it took so long, I had it done privately. My entire family had the test, which is the rest who live in the USA.
My daughter and I both tested positive for the BRCA1 mutation, as did one sister, who had breast cancer.
I recommend that your mother be tested ASAP.
Since last week, the PARP inhibitor Olaparib, has become available and is recommended for those with the BRCA1 or 2 mutation for maintenance treatment after successfully completing first line chemo.
Otherwise, your mom needs to build her strength up slowly and grow her hair back.
In 3 months, she will just have the CA-125 test, and if that is the same or lower, she is all set for her life to get back on track. On she goes, getting stronger and stronger until another 3 month check up.
If her CA-125 begins to rise , but she has no symptoms, demand a scan anyway. They will wait six weeks for that. If something shows up on the scan and she still has no symptoms, I would ask for treatment .
You know the cancer is there, so why wait until you feel lousy to start treatment? I think it’s better to be healthier when you start any treatment and knocking the disease back is better than letting it thrive.
Hi Laura, thanks for your message. I think I’m going to ring the CNS again tomorrow to check my mums paperwork. We have an appointment in two weeks and I don’t want to turn up and him think we’ve had a scan already.
Glad to hear you are all clear! Long may it continue. We are waiting the results of the genetic testing but having that extra info about the maintenance is very useful and something I’ll be keeping an eye on.
I was declared "microscopically clear" post surgery, so I declined the mid-chemo CT scan (after three sessions), asking what they expected to see - "Nothing," was the answer. I stopped chemo early (after the fourth session), and there's never been any suggestion of another scan being taken; however, after a bout of abdominal pain in the last few weeks, when I went to my three-monthly clinic appointment (bloods and external exam only) this week, I was given a tentative early appointment at 6 weeks, rather than 3 months, and was also given the option to be sent immediately for a scan. However, the pain has steadily diminished and the oncologist said she is, "not worried." It is up to me whether I rebook (for three months) or not, or whether I push for a scan. I think my current issue is muscular (I was rather energetically hefting a heavy amplifier about), and I prefer at all costs to avoid exposing myself to radiation if I don't need to. On the watch and wait regime (three monthly clinic appointments), the primary indicator is "feeling well", and I do feel marvelous, apart from the recent pain. It's counter-intuitive, but research has shown that there's no gain by rushing into a second line of treatment (whereas speed is of the essence at first diagnosis). So long as they're keeping an eye on your Mum, she's in the best place possible.
I've just finished my third-line chemo at Mount Vernon and can understand your concerns. Yes, your Mum should be due an end of treatment scan (as well as the blood test), ahead of the clinic appointment, to establish a baseline for monitoring. The normal protocol following that would be for three-monthly clinic appointments with blood tests. A further scan would be indicated only if your mother has new symptoms or - possibly - if there is a significant increase in the CA125. Hopefully, your Mum will have a nice long period of remission before either of these things happens. For a lucky few of us, remission can continue for many years and monitoring is eventually reduced to 6-monthly.
As others have said, the timing of starting new treatment, if or when it becomes clear the disease is progressing, can be a bit tricky. Oncologists are usually reluctant to start treatment before symptoms are affecting quality of life, based on studies showing that earlier treatment for recurrence does not prolong life, it just means more time spent in treatment. Not all of us can hold our nerve that long! Since I've never had any significant symptoms from the disease itself, despite too much disease to be immediately operable at diagnosis (3c), I've tried to strike a balance in the middle. But all of this is in the future for you if it's even relevant at all. The fall in CA125 looks very promising and, if the scan shows NED (no evidence of disease) your focus now would be on making the most of quality of life for as long as possible.
In case this hasn't already been discussed, you might want to raise the questions of genetic testing and possible maintenance treatments (Avastin, Parp inihibitors) at the clinic appointment.
Since I started at MV more than 5 years ago, I've seen the services come under increasing pressure with changes in a couple of key staff. It can be more difficult now to be sure you are fully informed and procedures are well coordinated. You do have to be your own advocate. I suggest contacting the CNS (or the secretary or oncology registrar) to make sure the scan is requested and can be scheduled so as to have the results available by your clinic date. You would then get a phone call from the scan centre to schedule the appointment. Sorry -- this is getting much too long!! Please feel free to message me privately any time if you think that could be useful.
My best wishes for you and your Mum. She is very lucky to have your support!
I cannot add too much to what everyone has said because I am in the US and I don't think there is any procedure for everyone that they follow. Depends on stage, success of operation, etc. I had a CT scan after my cancer was discovered during a hernia operation and have never had another. I just reached 4 years with Fallopian Tube Cancer, stage 3B, and CA125 is not a good marker for me. Only started at 45 and reduced to 6 and stayed there for 3 years and he quit even having me take those a year ago. I have every 6 month appts. now and he does an internal and external exam and talks to me about what recurrence signs I might have and to just report and continuing concerns. I kinda DO want a scan just for reassurance but he says 'no symptoms, no scan'. I wish you and Mom the best of luck and please check in here. As you can see, this is a wonderful, warm, friendly, knowledgable and especially supportive group who will be here for you. ALSO, if you don't feel comfortable with her Doctor, change!! Communication is everything and you HAVE to like the people involved throughout. Much love! Jill
I expect all the hospitals are different. I was Stage 3C and had a scan before and after chemo and I've had a couple since then. Then I treated at Southend on Sea and they have a good cancer unit.
Your mums CS125 is good at 13. None of us know what to really expect but hopefully she'll just go to her 3 month then 6 month check ups for the next 5 years and then everything will be hunky dory after that. There are a lot of factors that make us all different. She may be on Avastin which I understand is excellent. I was never offered that.
There is lots of hope that everything will be well. I"m now 6 years down the line and still going to my 6 month check ups. I think it's because I'm on a trial.
Wish you all the best and your mum is lucky for your support.
Ladies, I am so thankful you all took the time to read my post and reply to me. It makes me so emotional that you are all here and helping and advising me. I have felt so incredibly lost the last 6 months. I had just had my first baby, she want even 3 months and my mum was diagnosed with ovarian cancer and I had no one to turn to.
I called the oncology secretary and a scan should be arranged by the end of this week. Off to have bloods done tomorrow and then the follow up appointment is 15th Aug.
I will keep you updated, but thank you again for your help! Xx
I can’t add anything here, all good advice but it may be worth knowing the exact type of ovarian cancer (there are several) as it may affect the types of treatment offered. Oliparib isn’t offered for low grade serous in the U.K. for instance. Good that you can have genetic testing too. You’ve been throughout lot of stress and I’m reading about the effect that has on the body so look after yourself too!
Hoping you and your mum get the answers you need and I think my oncologist thinks I’m asking too many questions too but he’s polite!
Hi I go to Mount Vernon I’m there next Thursday, there’s a gynae group first Thursday of the month and The lynda Jackson centre is great for any help, free treatments, courses etc. I was on a trial and had my last scan a year ago , once my trial treatment finished. I was also 3A and I was diagnosed March 2017 NED to date x
Hi All. Just to let you know we finally got things sorted. My mums end of treatment scan is next Thursday and her appointment with the oncologist is one hour after. We have been told the images etc will be available and so we hope to get all the right answers. I will update and let you know the outcome.
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PPC or omentum? No surgery yet as tumour not shrunk enough but ca125 dramatically reducing.
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