second opinion

[Lolathestaffie]

my 81 year old mum was diagnosed dec 2022 with ovarian cancer. Hgs stage 4 after she was admitted with a malignant pleural effusion. Alcitrs on abdomen

she never had any defineable tumours more in the liquid The diagnosis was made by biopsy of the fluid to find origin

She was stared on chemo end of jan and at scan and review we were told she was having an excellent response. Only traces found in the lining ( assume tummy) The fluid dried up after 4th chemo and this has re sealed itself so chalk procedure not required

since the 4th chemo she started to experience on off breathlessness. They did another scan to check no concerns. She then finished on chemo five We recieved a letter to say likely plan was to start on an inhibitor

we then went along to consultant appointment to be told that she has NOT responded to the chemo as first hoped so no surgery and no inhibitors recommended. Also advised against further brutal chemo

mum apparently has numerous nodules and nodes that seem to have progressed since the midway review when supposedly everything was going so well. We were totally

Unprepared for this outcome

Mum is a health fit 80 year old prior to this with no health probs. It just seems too sudden. It’s not anywhere else ( I asked ) and it appears to be these sudden growth in the chest and lungs that has changed everything.

her ca125 are now normal. The consultant said it was the pleural team that were successful with the fluid rather than them. The pleural team just monitored and a nurse drained twice a week. This reduced significantly after each chemo

Any advice? Any one same experience? Do we get a second opinion ?

At the midway review the words excellent response were used…. can this change so suddenly after chemo 4 and 5? The on off breathlessness started at the same time

[Davonian]

After hearing such a positive 'excellent response' previously, I would suggest a second opinion.

[Eriksendi]

I would definitely be confused after such positive news and as another member has said I would also ask for a second opinion. I was also breathless through chemo and it turned out my haemoglobin level had dropped and this was causing it. About a year after my treatment ended a lung lesion showed on my scan. I was told I had it in the lung as well. This then went to the lung specialist who treated me for an infection and it hasn’t changed in 5 years 🤞🤞Definitely worth a second opinion - they do sometimes get it wrong,

[delia2]

Hi. I agree about a second opinion. I think sometimes older patients are not given as aggressive treatment. I also had breathlessness from anemia. The reversal in the doctor’s opinion seems odd. Try to get into a top cancer center.

[lesleysage]

Hi, Ovacome has an information sheet on second opinions:ovacome.org.uk/getting-a-se... and their Support Team could be helpful to talk to.

I certainly know taking a second opinion was the best thing I did. Which major hospital do you live closest to? x

[Morini]

Could they biopsy the nodes to establish what they are? If not, a second opinion may help and maybe from a specialist cancer hospital Oncology team (not surgical).

It's a long shot and this may not be relevant to your Mum's nodes, but chemo can trigger a reaction like sarcoidosis. ncbi.nlm.nih.gov/pmc/articl...

I had this in one lymph node and a top surgical team declined me for an operation because of the spread of cancer and seemed unaware of this. My Oncologist arranged a biopsy which showed non-malignancy. I didn't develop sarcoidosis, it resolved without treatment once chemo stopped.

[Fluffyjumper]

I also agree about seeking a second opinion. The breathing and chest issues may be due to infections, side effect of chemo, anaemia and I’d want further confirmation about any observed growths in the chest and lung area.

[Newbery3]

Get a 2nd opinion, it's worth it even if the outcome is the same. You'll know for sure the situation. Professor Fotopoulou in imperial hospital Hammersmith I would highly recommend. Good luck xxx

[Lolathestaffie in reply to Newbery3]

I am

Just so confused. Do I get surgery second opinion or treatment second opinion ( Parps, blockers etc) ??

X

[OvacomeSupport Partner My Ovacome Team in reply to Lolathestaffie]

Hi Lolathestaffie,

I'm sorry to hear that you are feeling so confused currently. As some of our members have commented, if yourself and your mum feel it could be beneficial, you can ask for a second opinion from another doctor about possible further treatment options for your mum. I can see that one of our members has already linked you to our booklet on asking for a second opinion, but I will add it to this comment too: ovacome.org.uk/getting-a-se....

This booklet has lots of information around the potential advantages or disadvantages of asking for a second opinion, and how to go about this if you think it could be helpful. Another clinician would be able to give you their opinion on possible further treatment options, including surgery or other treatments such as further chemotherapy, or PARP inhibitors.

If you would like to talk this through, or have any questions, do feel free to give us a call on the support line: 0800 008 7054, or drop us an email: [e-mail]. We're available from Monday to Friday, 10:00am to 5:00pm and we're here to help you.

Best wishes,

Alice - Ovacome Support

[Lolathestaffie in reply to OvacomeSupport]

thank you

I will Give my Mum some time ( she’s totally overwhelmed) then hopefully arrange this.

[OvacomeSupport Partner My Ovacome Team in reply to Lolathestaffie]

Hi Lolathestaffie,

We know from our members how overwhelming it can be to receive unexpected news from their clinical team. We are here for your mum too, so do let her know that she would be most welcome to give us a call if there is anything that she would like to talk through.

Best wishes,

Alice - Ovacome Support

[Sherrym in reply to Lolathestaffie]

I think time is of the essence, but as a lady in her 80’s yes…. She may need recovery time

[Ruebacelle]

2nd opinion seems worthwhile

[Vinney52]

Hi there - my Mum was also diagnosed stage 4 last year after fluid found in her lungs. She is now 83 and was otherwise in excellent health and very active. She was being lined up for surgery after her third chemo. However they said she then needed 3 more chemo as response wasn't great. After that they told her that surgery was now not an option. I didn't go to the meeting but I believe it was a combination of factors including poor response to chemo, age and sheer scale of surgery required. Surgery or no surgery - neither option is great when you are in your 80s. She is now having a break from chemo and on Avastin which has 'stablised' her at the moment. They are in Scotland so traveling around the country looking for second opinions doesn't appeal either (my Dad is 87).

Has Avastin been mentioned as an option? My Mum so far is having far fewer side effects compared to chemo and has much more energy. Good luck and keep us posted.

[Lolathestaffie in reply to Vinney52]

thank you

So the consultant has said that due to the change in chemo response that inhibitors etc won’t work either. Discharge with nothing else She sounds similar to your mum as intial diagnosis came after pleural effusion. There is no other spread other than these sudden

Nodes in chest and lungs which appear to have come after chemo number 4 She also developed breathlessness after

It’s just so confusing as review after chemo 3 was a good response to chemo

So sudden

[PlantPower]

I find this strange that the good news came after the CT report but their minds were changed without further CT. I don't understand how the conclusion that nodules and nodes have progressed when the last CT showed otherwise. I would ask for a second opinion as you need a good explanation and where to proceed from here. Ask for all reports to be sent to the second opinion Dr so they are up to date with the treatment. Best wishes and love xxxxx

[Lolathestaffie in reply to PlantPower]

hello

They did another CT scan after chemo number 5. She developed some breathlessness after chemo 4

So there was a scan at the start, after chemo 3 ( told good response) and then another scan after chemo 5. The change appears to have taken place between chemo 3 and 5

Thanks for your reply x

[PlantPower]

Now I understand. Def second opinion needed here. Good luck. xxxxxxxx

[Sherrym]

second opinion definitely. Professor Ledermann is my ‘go-to’ in Harley Street as long as yr mum fit enough to travel