So, my gynae team confirmed numerous growing lung lesions and have referred me to UCLH for a second opinion on treatment & possible clear cell specific trials. As I am now platinum resistant, Caelyx and Niraparib have been suggested by my team. I can no longer have Avastin due to recent bowel surgery & risk of perforation.
I came away feeling hopeful from my meeting but still unsure about these lung lesions who they thought were benign as they had not grown from Nov 23 (diagnosis) to June (remission). BUT when I had recent bowel surgery ( at a different hospital), the surgeon was concerned they were growing then (July) but my team dismissed it several times.
So I decided to get copies of all my CT scans from the start, and the July bowel scan is labelled red alert alert with attention needed, growing lung nodules and enlarged para aorta nodes 🤔
I felt angry at this not having been discussed with me and we are now almost September so have emailed my team for an explanation. I am losing faith in them, and feel a second opinion is my best option now.
I have been recommended Rebecca Kristelait as someone who knows about trials etc although I believe she is based at Guys? I will try and contact her.
It's so stressful all of this, it's hard enough dealing with the news of recurrence, let alone feeling uninformed.
And breathe.....🙈
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Kazzh
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Oh Kazzh, this really isn’t good enough. Of course you need to be told exactly where you are at and what treatments are available for you. To not have discussed with you the red alert on your scan at the time is unbelievable 🤷🏻♀️
I really feel your best way forward is getting a second opinion asap. I really hope that the lesions are benign as they are saying but you need to be confident in their opinion and at the moment (quite understandably) you are not. I hope you manage to find a trial you can join.
Hello there I went to see Rebecca Kristelite at Guys for a second opinion a few years ago and she was great. I contacted her secretary & had an appointment very quickly. Sending love xxx
My team are agreed that they are cancerous & now considering next treatment. My consultant admitted she hasn't looked at the scan despite concerns being raised several times. I will be questioning her at my next visit for sure. No trial suitable at UCLH so will get the second opinion organised ASAP, may request a permanent move, Marsden my nearest, & seek out other trials x
Hi Kazzh, so sorry you’re going through this. You are doing amazing navigating your way through the confusion and uncertainty. Just want to send hugs and hope second opinion comes through quickly. Thinking about you. Xx
Oh Kazzh, that is totally unacceptable, definitely get a second opinion. It’s bad enough dealing with this disease without having no confidence in your team, that’s in your control so definitely find someone you have faith in. Good luck and keep us informed, sending hugs ❤️
Definitely second opinion. I've heard great things about Rebecca Kristeleit, and you are entitled to a second opinion on the NHS, so ask for referral. And if your oncologist refuses to refer you on that's another red flag! Your GP can make the referral if the oncologist won't.
Good morning 🥰 glad you are taking the 2nd opinion steps, I had to on first line and went private and it saved my life at the time! Go with your gut 💪you are strong and you can get this sorted xxx
Sorry you're having to deal with this. I know what you mean re uninformed. I was told my lesion hadn't grown and learned from radiologist report that it had doubled in size. If you have an option to go to UCLH, grab it, as they are very forward-thinking re trials as I found out at Ovacome Day. I will DM/PM you in Chat as well. x
Hi Kazzh. I’m so sorry you’re dealing not only with recurrence but uncertainty and lack of trust in your team at this point. I agree with the others about getting a second opinion and I hope you find a good trial.
Hi Kazzh I empathise with you having to cope with your recurrence as well as not feeling confident with the care you are getting ( or not getting) . I agree definitely request PET scan and 2nd opinion Good luck x
If you have the energy, put in a formal complaint via the hospital PALS service that your scan was marked red and it was ignored. I was under Dr Michael Flynn at UCLH and found him very good.... Both UCLH and Marsden advised me against having avastin. I have always been stage 4 , BRCA 2, HGserous, and had carbotaxol, big op (NED) and finished 2 years of Olaparib about 6 months ago. Doing well.
Both the consultant at UCLH and the Marsden advised against Avastin for me. I did not ask why but did write to the Professor in Manchester who initiated the drug and got a rather non committal reply. I think my consultants probably said no to A because I have congenital Ehlers Danlos Syndrome and the Marsden consultant predicted I would have problems with Olaparib, which I took for 2 years. BOth that and the carbo taxol gave me a lot of nerve damage to my legs (motor neuropathy) so whereas I was Miss Skippy Toes I now have legs like logs of timber and am a disabled walker. Plus poor balance. No doctor can predict this will improve, if so with long time. A, I believe, can give you joint pain so perhaps they thought the cocktail would be too much.
So glad to hear you're doing well, Avastin is known as a better option for Clear Cell so is usually first choice but I can't have it now so it's a case of what next. I just keep thinking if I had not gone to A & E Monday week with chest pain and had the scan, this cancer may not have been discovered for months, I would have started the planned Niraparib & probably got more ill with symptoms before they decided to scan. They also couldn't rely on my rising CA level as they assured me it was due to the recent bowel surgery, so you'd think they'd be doubly sure to check scans that both myself (several times) & the surgeon at the other hospital had concerns about 🥴My consultant asked to see me next week to discuss (she wants to focus on the way forward- I bet she does!) Well I'm away so I will grace her with my presence the week after and focus on exactly what has happened before moving anywhere. She will know how disappointed I am for sure. Anyway, away tomorrow for a break with my mum & sisters for a week in Norfolk, we so need it xx
Hi , I have used Pals previously and found the process helpful, I did feel my voice was heard and those involved who from my perspective made poor decisions about my health needs got a better understanding of the impact on me as a person not a “case” or an nhs number. I really do hope you enjoy time with your family in Norfolk. Xx
Hi Kazzh, sorry to hear about the hard time you’ve been having, I agree with the others in that you should get a second opinion, I would contact Rebecca Kristeleit as I know she has been involved in clinical trials and is at Guys in London. X
I’m so sorry for everything you’re going through. I hate the fact the medical professionals keep things from you!! I felt that throughout my chemo. I have clear cell carcinoma too but thankfully early stage. Throughout chemo I had to push to get my numbers and only when I was dizzy and having chest pains and trouble breathing did they admit how low my red cells had become…. So whilst different … I can really emphasis with the feeling of being kept in the dark!! Just joined and reading through your post and it saddened me to hear of everything you’re going through having been declared NED just a few months ago!! I really hope you start to get some good advice and effective treatment soon!! Xx
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