Almost certain recurrence

[Fred22]

Hi everyone

I’ve posted a couple of times over the last couple of months about lung nodules found on my tow lates ct scans. I really appreciated all the advice and felt much more prepared for the follow up appointment.

Anyway it was decided that I should have a PET scan which I had just over a week ago. This showed the lung nodules as ‘indeterminate’ but unfortunately a number of para aortic lymph nodes lit up - they are significantly enlarged and at the follow up appointment I was told that it is almost certain that the clear cell cancer is back. So I’ve now got another PET scan scheduled for the end of October - which seems like a very long way away. Then they will see what has changed and decide what to do.

I’m really scared. As with many other ladies on the group I was just getting my life back - took on a new job which is really busy. And now I don’t know what to do. Onc told me to look out for symptoms and encouraged to take a holiday which I really hope to do.

I don’t know what I’m asking really but I guess if there is anyone out there who has had a similar situation I’d be grateful for any thoughts. I gather that with clear cell the chemo options may be limited.

Thank you anyway for any advice.

Fionax

[Lizz49]

Hi Fiona

I’m sorry to read that you’re likely having a recurrence. Hopefully the next scan will allow your team to make a decision on the next step and you can get a treatment plan underway and back in remission again.

I’m also stage 3b clear cell diagnosed Jan 2018 and very lucky to still be in remission. There are some ladies on this forum with clear cell who recurred, had more surgery then chemo and have since had many years of remission (Lesley is one lovely lady on here in that position I’m sure she’s 7 years clear now).

I know for clear cell there is currently a trial ongoing and I think Lesley is a patient representative for that trial. I believe it’s an immunotherapy trial called Peacocc, have a google for more info. Has your onc said surgery is an option? I’m sure once a plan is in place you’ll feel more in control and will tackle it head on. It’s such a rollercoaster but stay strong and positive you can do this!

Sending you tons of good wishes

Liz Xx 💕

[ruthg55]

Hi Fiona .... sorry to hear you might be facing recurrence. I know that scared feeling. I'm not clear cell (3A high grade serous diag 2015) but my recurrence (2018) was also in para aortic lymph node. I managed to have surgery to remove the node with no further treatment. So maybe if it is recurrence surgery might be an option? It was another major surgery with node in a risky/tricky spot, but it was successful. Months after that surgery one of the other oncologists I spoke to mentioned that it was possible that radiation therapy might have been an alternative treatment rather than surgery. Something else to consider perhaps. I did have symptoms though and knew something wasn't right when I recurred (almost like a dull ovary pain on one side - but strangely enough the lymph node was very high up in the abdomen towards the back near the spine) but pain referred to ovary site.

Hope you get that holiday before next scan as it helps a bit to take your mind off things. I did the same - my PET scan was in May, but I didn't have surgery until July. Wishing you all the best ... Ruth

[Fred22 in reply to ruthg55]

Hi Ruth thank you so much for your reply. An operation to remove the lymph nodes is one possible option they have mentioned (also chemo, radiotherapy and a lung node biopsy). I’m really scared of being in hospital on my own which would be the case in the current situation. Can I ask what your recovery was like from the op and how long you were in hospital after it? And once out what was your recovery like? I’m trying to be prepared for situation if they offer options. I really appreciate your help. Fionax

[ruthg55 in reply to Fred22]

Hi Fiona, must admit this second surgery was tougher than the first (first time I recovered very quickly). I again had to be cut from diaphragm down to pubic bone over the old scar so I guess that's why recovery takes longer. I was in hospital only 3 nights (though I think one more night would have been good). I actually choose to being on my own and told my husband and 16yrs old son not to come & visit - but I was in a hospital 100kms away from where I live (in Melbourne). I tend to be "braver" on my own and think I prefer not to see them worrying about me, which only makes me worry. I'm always so sick after anaesthetic - part I dread the most actually. Pain level was okay. I was back out walking (baby steps to start) most days about a week or so after surgery and I even managed to get out for a haircut and attend an art exhibition my husband was part of back in Melbourne two weeks after surgery. Think you just have to pace yourself to what you're normally used to. I walk a lot because of the dog. Probably took up to 8wks before I really felt back to "normal".

Only problem now is I have an incisional hernia - which appeared about 18mths ago. I was actually back in Melbourne yesterday seeing the surgeon who did the operation 2yrs ago to speak about getting this hernia repaired. Not really looking forward to another operation & reopening the same scar for a 3rd time but not a lot of options and I'm so very grateful that's my only problem. This surgery won't happen though til probably early next year.

Would be good to know if anyone has had just radiotherapy alone to get a comparison. I kind of got the impression when I spoke to one of the senior oncologists (few months after my 2nd surgery) that he thought radiotherapy can work well on these nodes. He did say it was something to think about if I'm ever in this situation again.

Hope this helps & I haven't rambled on too much. Please just ask if you need more info. Take Care! Ruth xx

[Fred22 in reply to ruthg55]

Hi Ruth that’s really helpful. I’m very fit at the moment as also have dogs and walk and swim a lot but the idea of another huge op is daunting. I was very sick after the first one and was totally miserable - 6 days in hospital and the idea of doing it without my husband by my side fills me with dread. However I’m so grateful for your information as I’m always better when I know the score and can begin to get my head round it - if that’s what they suggest at least I’ll be prepared! Fionax

[Melody6]

Hi Fiona, so sorry to read about your situation. I just wanted to let you know that I found Jane McLelland’s book “How To Starve Cancer” to be absolutely brilliant and very reassuring. Some ladies here attend the Care Oncology Clinic in London in parallel with their hospital treatment and it is affordable. And I believe there is a clinical trial going on at the moment for clear cell ladies also - Atari I think it’s called - your doctors will know about it. Love from Mel 💕 xx