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rosa123

Ovaries....

Hello lovely people,

I finished treatment last month for stage 4 cancer which up to now had always been with curative intent...

But since finishing chemo my stomach has been swelling massively and I've lost my appetite, feeling bloated all the time. I knew something wasn't right but my oncologist said they would examine me at my appointment to get the follow-up CT scan results, which was a few weeks off. I managed to get some interim info from my nurse who said that a 7cm ovarian cyst had shown up but probably wasn't of any concern (hollow laugh...) But in the early hours of Monday I was woken by severe pain so took myself off to AandE which resulted in an ultrasound yesterday... they found something "of concern." The consultant was reluctant to say it was definitely cancer, but she said a lot of the hallmarks were there. She put me on the MDT this Friday to come up with a plan.

I guess my questions are: has anyone else had ovarian mets, are they always Krukenberg, can they usually removed (or any other treatment options to know about?) and, finally (perhaps this is a silly question, but.....) any positive outcomes for this kind of thing? Thanks for reading :x:

louise28

Hi @rosa123 am sorry to hear about this, what a worrisome thing. Its good this has been caught relatively early and that the team are being cautious etc. If its any consolation, I had a few cysts appear at diagnosis and eventually they went away, but the team were v careful to treat them as suspicious given that i had a bowel tumour. I'm going to tag some ladies who have had ovarian cysts and hoping they can help. I should say that my understanding of krukenberg tumours is that sometimes they are removed..other times chemo is offered, etc and I've seen people have full hysterectomies and similar and the tumours have gone for good and without recurrence! so fingers crossed for a good outcome for you too.

@Emlou @Lauralou9 @juliealdis71 and @Cakeyj @Marta76

Hope you girls dont mind the tag!
:x::x::x:

rosa123

Hi @louise28 thanks so much for the reply! Hope you are doing OK :x::x::x:

louise28

I'm not too bad thanks. Very well in general! I should say these ladies had krukenbergs not actual cysts! Mine was a cyst tho and not cancer

rosa123

@louise28 really glad to hear that it was just a cyst in your case! And pleased to hear you're doing well. All the best : )

Lirio345

Hi @rosa123, I have no personal experience to offer you, but I just wanted to say I am so sorry to read about what you have been going through. I do hope you get clarity and a plan after Friday - I’ sure you will.

Take very good care

Kim :x::x:

mountainwoman

Hi @rosa123 I'm sorry to hear about your new concern. I was diagnosed with bilateral krukenberg tumours in 2017 (also a few small deposits in the omentum and some malignant ascites). I had CRS/HIPEC in Basingstoke where they removed both ovaries, tubes and did a bowel resection. I then had 12 rounds of Folfox. I was clear for about 2 and 1/2 years then had a small recurrance in the pelvis so I was operated on again in Basingstoke(June 2020) and had further chemotherapy. I have been clear since.
As far as I know CRS/HIPEC is the best treatment (only performed at specialist centres) although I think I have read about some people who have had the ovaries removed at their local hospital. I'm not sure how successful chemotherapy is as I think the Krukenberg can be quite resistant to it. If the outcome is that you have krukenberg tumours I would suggest you ask for the opinion of one of the specialist centres for peritoneal malignancy (Basingstoke, Christie, Birmingham, St. Marks, Imperial). I think there is some info on this website in the advanced disease section?
However, I hope it's only a cyst and you don't need this info!
Take care :x:

rosa123

Hi @mountainwoman thanks so much for replying! I am delighted to hear that you are clear now after everything you've been through : )

I would LOVE for this to just be a cyst, but the consultant seemed fairly confident it was cancerous. CA125 was 111 and she said there were other features that made her suspicious, but I suppose they have to be careful what they say until after the MDT etc. As far as I know, it's only on one ovary at the moment, but I'm already under the Christie, so I will read up on CRS/HIPEC... She talked about surgery followed by more chemotherapy, but I'll have to wait and see what they come up with at the MDT, just want to be prepared for the next steps, so thanks very much for this useful info. All the best :x:

Emlou

Hi @rosa123 (thanks for tagging me @louise28)

Sorry to hear about everything you have going on. I was diagnosed with Krukenberg tumours last May. My CEA markers had been going up and a PET scan revealed that my ovaries were slightly hot. They decided to open me up to take a look and remove ovary if it looked a bit suspicious. They removed one dodgy looking ovary and fallopian tube and it was found to be Krukenberg. I then went back to have the other one removed and that was found to have cancerous cells too.

I was really worried about being diagnosed with a Krukenberg tumour, and I had been hoping for a benign tumour as I had read that can push up cancer markers. However, my oncologist was hugely reassuring. My oncologist has been practising for over 15/18 years (I think) and he said that in that time he had only treated one other woman for Krukenberg tumours. 8 years later and she is still cancer free. After my operations I underwent chemotherapy. We were aiming for 12 cycles but I had 8 in the end and finished treatment just before Christmas. I'm now being monitored closely. I had bloods and scans in March and it's all looking good so far. I have bloods again next week and another scan in July.

I would say you may want to get a second opinion. The surgeon who removed my ovaries spoke to the Royal Marsden and asked for their opinions and I found that hugely reassuring. My oncologist also spoke to colleagues in other hospitals.

I hope that helps. Feel free to give me a shout if you have any questions.

Em :x:

rosa123

Hi @Emlou thanks for getting back to me and it sounds as if you're doing well - that's really great news!! I was on the MDT list for this afternoon so I might get in touch with some questions once I know a bit more about what's going on.... Thanks again :x:

rosa123

Update: my oncologist appointment got moved forward to today. Ovarian met confirmed, along with "multiple peritoneal deposits" (out of curiosity, do ovarian mets always entail peritoneal involvement?) and 1 or 2 new liver lesions.

The plan is to do an MRI and PET scan to determine suitability for surgery, and if that's not an option, it would be FOLFIRI and cetuximab. I have a nasty feeling it's going to be a "no" from the Christie, so I guess at that point I would ask for a second opinion on the surgery, and I just want to be prepared.... I think @mountainwoman or @Emlou also mentioned Basingstoke, Birmingham, St. Marks and Imperial. Does anyone know if any of these are "better" than others for getting accepted for surgery? Anything else I should be doing at the moment? Really feel like I need to be "doing something" in response to this progression... Thanks in advance :x:

louise28

Hi @rosa123 I'm sorry to hear this but it is good they are doing a pet and also excellent that you're being considered for surgery.

I can only give you my tuppence worth which is that Basingstoke have a fantastic rep for peritonr mets and I'm going to tag the wonderful Karen @Baxter2 although I know she has been in hospital but you can read her story in her profile. She had hipec at Basingstoke and speaks v highly of them..she also had liver involvement and this was also removed. So some places may not do peri removal if there are other areas of disease... some times it is possible so prob worth talking to Karen at some point

I've read ovarian involvement makes peri mets more likely but I've known of many people with one and not the other.

It's crap, but I found seeking a.second opinion fantastic for peace of mind

:x:

Emlou

Hi @rosa123,

I'm sorry to read your news, but excellent they are organising a PET scan.

I had no peritoneal involvement and no liver lesions that could be seen. My understanding is that it normally goes to the liver and then the ovaries and that peri mets are more likely too. But I might be wrong there! I know that for my July scan my oncologist has asked the radiologist to pay really close attention to that area and to look for possible peri mets.

I would definitely line up a second opinion. I've heard very good things about St Marks.

Em :x:

rosa123

Thank you @louise28 and @Emlou that's really helpful info! :x:

mountainwoman

Hi @rosa123 I'm sorry to read your update. I only have experience of Basingstoke which is a Centre of Excellence for peritoneal malignancy-I think The Christie is as well so you are in good hands. I have heard some people say that Jamie Murphy at Imperial is willing to take on more difficult cases. I think if you search on here you will find some posts on this. My experience of Basingstoke was excellent.
I hope the PET and MRI give you some clarification.
Take care

rosa123

Thanks @mountainwoman I 've written down the contact details for Jamie Murphy and Basingstoke in case the Christie says no. But got to get the scans sorted first. Onwards! Thanks again and all the best : )

Baxter2

Hiya @louise28 (and thanks for the tag) and @rosa123

I'm sorry for the delay to my reply but I've been having a bit of a break from the forum mainly because I've been struggling to type anything other than gobbledegook (or some would say more gobbledegook than usual! It takes me forever to correct my numerous typos and makes me feel frustrated (a little more than I'm already feeling!) Im home from hospital,with one of those wonderful fancy and comfy hospital beds that do everything apart from fly you to the moon! I do have two fractured vertebrae but at a loss as to how I've managed that. Habit had a lot of back pain from mid Feb, it's anyones guess when they happened. So treatment is basically nothing but rest and gentle exercise (whatever that means ) and crazy pain killers of oxycodone long and short acting and diazepam to relax muscles. Trouble is, they all relax my mind and I'm struggling a bit in that department! Still, if I'm able to get to Crete on Monday, I'm ecstatic and I feel the benefits far outweigh the risks!

I was told by an anaesthetist at Basingstoke that they do twice as many CRS and hipecs at Basingstoke than the Christie and more than any other hospital in the world. I've never forgotten that statement.
Another think I remember is that the nice 'guidelines' are just that.....guidelines and if there's disease in more than two places but the surgeon deems you otherwise fit and motivated enough, he/she may well decide to operate and accept the risk of a poorer overall outcome of surgery. My Oncologist a,ways refers to Basingstoke for peritoneal mets and I know one very recently referred from here in Fife shins,so had he CRS and HIPEC there too. I would trust their judgement but always seek a second opinion. I'm not sure if I E E oven answered your question louise but please, if there's anything else, please just give me a shout either her in by DM.

Lots of love,

Karen 🌺🌼🌸🌻🌹

Quote from @louise28:
Hi @rosa123 I'm sorry to hear this but it is good they are doing a pet and also excellent that you're being considered for surgery.

I can only give you my tuppence worth which is that Basingstoke have a fantastic rep for peritonr mets and I'm going to tag the wonderful Karen @Baxter2 although I know she has been in hospital but you can read her story in her profile. She had hipec at Basingstoke and speaks v highly of them..she also had liver involvement and this was also removed. So some places may not do peri removal if there are other areas of disease... some times it is possible so prob worth talking to Karen at some point

I've read ovarian involvement makes peri mets more likely but I've known of many people with one and not the other.

It's crap, but I found seeking a.second opinion fantastic for peace of mind

Cakeyj

Sorry for the delay is replying, I've been out of hospital nearly 2 weeks following TPE surgery to remove my peritoneal mets, I've updated my profile for full details and I'm happy to answer any questions. I went to Imperial at being turned down by Basingstoke and St Thomas'

Lot of love :x::x::x:

rosa123

Hi @Cakeyj thanks so much for getting back to me. I really appreciate your reply, especially so soon after your surgery. I hope you're recovering well and getting lots of TLC :x::x::x:

louise28

Wow @Cakeyj that sounds like such a major surgery but I'm glad you are recovering and visible cancer removed. Keep us posted :x: