I'm new here - recurrence in Para Aortic Lymph ... - My Ovacome

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I'm new here - recurrence in Para Aortic Lymph Node

ruthg55 profile image
36 Replies

Hi All .... I luckily discovered this site about a month ago when I was in a dark place psychologically & feeling absolutely gutted that I had a recurrence. Reading through this site has made me feel much less alone and afraid. So a huge thanks to all of you for sharing your stories and to a lot of you that still manage to do it with a wicked sense of humour and have made me laugh. My favourite saying now is "I have to put on my big girls pants" and get on with it!

I was diagnosed OC in April 2015 (Stage IIIA, CA125 was 950) had optimal debulking with no visible tumours (apart from the 2 biggies on the ovaries). Pathology picked up microscopic cancer cells in the omentum (none in the 4 lymph nodes taken). After surgery, I had 3 cycles of inter peritoneal taxol/cisplatin (this treatment was my choice as I had done a lot of research before starting chemo and apparently I was a good candidate for this type of chemo which is delivered directly into peritoneal cavity and so I got a referral to the only hospital in Melbourne that does this). I then choose to stop with the IP (its pretty full on) and continue with the gold standard (taxol/carbo) for the remaining 3 cycles. Treatment finished Nov 2015 and CA125 was down to 9. (Would just like to add here before I started chemo - nearly 8wks after surgery - my CA125 was 15 - and that is the figure it has usually hovered at over the last 2yrs.)

I was feeling very optimistic last Nov 2017 when oncology said my 3 monthly visits could go to 6 monthly. They told me I had "graduated". So, I was shocked at visit in May to be told my CA125 was 125 (I was convinced a "typo" had been made - maybe it should be 12.5). Not so, CT scan and then PET/CT has shown a 2cm tumour in one of my para aortic lymph nodes. Since it is only one tumour showing up I have been offered surgery and fingers crossed it can be done as keyhole surgery. My gyno team have to liaise with the upper GI surgeons as they are the experts for abdominal surgery and they would prefer they do it, however, have been told if they take too long then the gyno. oncologists will perform surgery. So now it is waiting time to see when that happens. This rollercoaster ride started mid May, it does do your head in - but we've all been there and we do cope.

Would love to know if anyone on here has also had recurrence in para aortic lymph nodes and how it went?

A wee bit about me, I'm 62yrs (yikes), live in Australia (country town about 100kms from Melbourne), but originally from Scotland, my husband is from the Philippines and we have an amazing 16yrs old son and an adorable Monty dog!

I have an incredibly supportive gyno oncology team and have the utmost faith in them. The nurses are amazing and having my chemo treatment at the Mercy Hospital for Women in Melbourne was the best place for me. It is a small "venue" and only women with OC were being treated - we were all a huge support network for each other. I used to get the "naughty corner" for one of my days of treatment as I had to lie flat on my back for about 6hrs when I was having the inter peritoneal chemo.

Anyway, I've gone on a bit here (but feel the better for it). Thanks to all of you!

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Maus123 profile image
Maus123

Hi Ruth. I had my initial debulking surgery for stage 3a OC (borderline and low grade serous) in Oct 2015, which did not show any disease in lymph nodes i.e. none were taken. Treatment was just watch & wait. In Jan 2018 I recurred in pelvic lymph nodes (indicated by a sharply rising ca125 and the lymph nodes showing up on PET/CT).

Was given a choice of laparoscopy/keyhole surgery (easier recovery) or laparotomy (better chance to spot any additional tumours). Either would be performed by experienced gyn. onc. surgeons in my Munich based cancer center. After some deliberation, I actually went with the laparotomy, as that gave my surgeon the opportunity to ogle and fondle every bit of innards in the abdomen including all of my bowels etc, and check for tumours.

Makes for a hilarious picture in my mind.. him pulling out meters of guts and looking from all sides, nodding sagely then folding them back into the space. Hope he didn't go about it like I throw clothes into my wardrobe, uh oh.

They operated 'R0' again i.e. with no residual visible tumours left, and told me that indeed only lymph nodes had been affected (11 of the 32 removed nodes featured low-grade serous OC).

Recovery was still slightly faster and easier than after the first big debulking op.

If you have a choice, it might be worthwhile to have the op done in a place where they perform quite a lot of gyn-onc surgeries.. just in case.

I'm sorry about the recurrence but I hope it is only in your lymph nodes, and that you get back to your normal life soon. All the best. Maus

ruthg55 profile image
ruthg55 in reply to Maus123

Hi Maus

Thank you so much for your quick reply and hoping everything is going well for you now. Our timings with diagnose and recurrence are very close. However, I was high grade serous.

You made me laugh with the surgeon "handling your innards". Sounded like a very thorough old professor - and the sort of person you want having a look. I too felt very comfortable with the gyn.onc. surgeon that performed my initial surgery. He has an excellent reputation and I was told I got one of the best, even though I went through the public health system here. (He's based in Melbourne but operates once a month in the town I live in.) He also had a really good look and gave the omentum a good handling - was told after surgery he could not feel anything and there was no residual visible tumours lurking about. They were all very optimistic (before the pathology report came back re omentum having microscopic cancer cells) that the tumours were only contained to my ovaries.

If the lymph node affected now had been in my pelvis then my gyn.onc. surgeon would definitely be the one to remove, however they explained since it is in my abdomen then the experts are the Upper GI surgeons. I asked about their "expertise" from the gyn.onc. and was told not to worry at all as the majority of surgeries they do are cancer related. The hospital involved is the Austin Melbourne - they are world leaders in liver transplants. However, if it looks like it is going to take too long to get in then my gyn.onc team will do the surgery which they are also confident about. I'm leaning towards just having the laparoscopy, as with the case of the omentum nothing could be detected by feel or look. It would be truly wonderful to think that it is ONLY one lymph node affected, but if I'm realistic about it then out of the hundreds of LN's can only just one be really affected? Probably not. But hopefully that's a long, long way down the track!

Does having so many nodes removed affect you at all? And are you on any treatment? Hope all is well Maus and thank you so much for sharing your story. All the best, Ruth

Nancy222 profile image
Nancy222 in reply to ruthg55

Hi Ruth,

Over two years ago I had 36 lymph nodes removed and haven't been affected by their removal. I try to keep moving as much as I can and walk.

Sounds like you have a great team on your side, and I'm glad the forum has helped you. I know it's helped me immensely.

Best wishes, XXOO

ruthg55 profile image
ruthg55 in reply to Nancy222

Hello Nancy, thank you so much for sharing - you're right this forum is enormously helpful and helps take away all the scary stuff you put in your head! Wow, 36 removed and fantastic to hear you haven't been affected too much. I do walk a lot as I have a boisterous Lab.

And yes, having a great team has a huge psychological impact. I was originally going to have my treatment when first diagnosed in the town where I am living, but I had such a 'doom and gloom' meeting with the oncologist who had zero 'beside manner' and then I was allocated a 'chair number' where chemo would be given. It felt like something out of 1984. Luckily that all changed dramatically when I asked for referral to the specialists in gyn.onc. in Melbourne - whole different scene and I immediately felt I was in the hands of people who cared - and willing to sit and listen to me.

All the best to you Nancy .... Ruth xx

Nancy222 profile image
Nancy222 in reply to ruthg55

I'm so glad you went to Melbourne. It makes all the difference. XXOO

ruthg55 profile image
ruthg55 in reply to Nancy222

:) big hugs xx

Maus123 profile image
Maus123 in reply to ruthg55

Hi Ruth. Sounds like you might be in good hands for the surgery in either team.

I have not yet experienced any lower body drainage issues after removal of the 32 pelvic lymph nodes. That said, I'm trying to prevent them by wearing fitted compression stockings almost every day, moisturizing feet/legs, staying in the cool where possible and avoiding scratches (easy, with compression stockings :).

Following the second surgery, I've agreed to having the standard 6x 3-weekly carboplatin/paclitaxel plus avastin chemo treatment. I don't believe strongly that tax/carb will be particularly effective with my low grade OC (my consistent ca125 of around 100 before and mid chemo seems to agree) , but under state insurance my options are somewhat tied to the German guidelines. Unfortunately those do not recognize the need for different treatments for recurred high and low grade tumour cells, so I'm a tad stuck, thus chemo. Afterwards, I should be able to get onto Letrozole though.

Wish you the best with your surgery. To me surgery always sounds like the most effective treatment option, where available.

Hugs, Maus

ruthg55 profile image
ruthg55 in reply to Maus123

Hello Maus .... thanks for replying again to let me know about how you're handling avoiding lymphodema. You're very proactive which certainly helps. Hope the carbo/taxol does a good job and you're handling it ok. I didn't really have any problems with it (I had 3 cycles of that & 3 of carbo/cisplatin). It didn't bother me losing my hair (I'd been saying for years I wanted to shave my hair off and start again - careful what you wish for :) ) and I just went out and about with my bald head - but I didn't like losing eyelashes & eyebrows, that made me look sick. I suppose it's short-lived really and if it works then thats all worth it.

All the best to you Maus .... Ruth xx

Seasun36-uk profile image
Seasun36-uk

Welcome to you Ruth! I haven’t any knowledge of what you face but I am sure others will have. Your team & hospital treatment sound excellent!

Keep us updated. We are having some of your lovely sun here in the uk at the moment! 🔆🌸🌺🔆

ruthg55 profile image
ruthg55 in reply to Seasun36-uk

Hi Seasun .... sincere thanks for your wishes & I will update. Feeling bit anxious today as it was one week ago I had my appointment to discuss surgery but haven't heard anything back, so I'm going to have to call them to see what is going on. my mind is playing tricks and I'm thinking the upper GI surgeons have had a good look at my PET/CT and have decided it's too tricky or not worth operating on.

But, I'll take my mind off it for a while as my "baby" - 16yrs old son, has school free day today and wants me to take him to Bounce (a massive indoor trampoline place). I might not be bouncing - don't want my lymph node bursting!!

Wish I was having some of that UK sun. We live in probably the coldest state in Australia and the town I live in reminds me a lot of Glasgow and the cold, wet, blustery winds. It's now winter here and currently is only 7degs! We do get a nice summer, but that's a long way off - December. We are spoiled though as we have a house on a beach in the Philippines, but only get there during the long summer holidays here when my son has school break. Enjoy that sun - it's so good for the soul! All the best, Ruth

Seasun36-uk profile image
Seasun36-uk in reply to ruthg55

Hi Ruth,

You are so good at replying! Nice to hear news of your son...must be hard for him. A couple of things occurred to me as I re-read your post (speaking as an ex-nurse). First of all, surgeons generally like a challenge, so don’t worry that it’s too difficult. Also they are very realistic & will get advise if it looks tricky. They usually love their job 😯 (who would do it otherwise?!). Secondly, I would agree with one of the other ladies - a Laparotomy (I think) would be preferable to keyhole - they can have a really good “look around”! (Not so easy with keyhole).

With all good wishes, Linda 🌺🌹🌷

P.S. Still sunny here - such a novelty (for us!) & so good for us, as you say 🔆🌤🔆

ruthg55 profile image
ruthg55 in reply to Seasun36-uk

Hi Linda ... thank you, really appreciate your take on this and you have made me feel more reassured re surgeons. I will certainly speak to them re keyhole versus laparotomy (learning a new word here as well). My only reservation with the latter is (apart from bigger op) that when I had my debulking the gyn.onc. surgeon had a really good feel and look at the omentum (that was removed) but couldn't find anything, but of course pathology came back with some microscopic c.cells showing up. I suppose it depends if having a good look around would alter what treatment I have after. (I'm a bit of an ostrich and suppose fear what they may find by having that look around, so keyhole sounds much more appealing to me!) I'm maybe also putting too much faith in the PET/CT scan and wondering how reliable they are. Was told they are pretty accurate compared to just a CT scan, but who knows, maybe really small tumours won't "light" up on the PET. I'll keep you updated on what happens. Thanks again and lovely to hear the sun still shines, woo hoo :)

January-2016-UK profile image
January-2016-UK

Hello Ruth, no nodes were removed during my operation. I recurred (within three months) but only in my para-aortic nodes but subsequently other nodes further afield were involved. Following weekly taxol all have disappeared apart from two which are too small for a trial as they need to be at least 1.5 cm. I have had no treatment since March as a further scan showed little change. I have a new scan booked on Tuesday, 19th to see if I can start the trial.

If your recovery from your initial op was quick and easy it might be an idea to opt for that so the surgeon can also have a look around. It is important to have the op done by a surgeon who has a great deal of experience of this type of operation, which option you decide.

It must have been a shock to you after such a long interval and especially after being told you'd graduated so to speak. I like the sound of your Melbourne hospital.

All the best.

Helen

ruthg55 profile image
ruthg55 in reply to January-2016-UK

Hello Helen .... I really appreciate you getting back to me. Makes a huge difference knowing others have been there, done that! I am lucky I had a good interval before this. That must have been really tough on you only having 3 months break. I hope all is going well for you now. Are you handling the weekly taxol ok? Hope your scan on Tuesday is the result you are looking for. Can I ask what the trial is?

Yes, my recovery was good from initial op. When I get my appointment with the Upper GI surgeons I will ask what they recommend and take their lead. I've been told by my gyn.onc team that I need not have any worries re the expertise of the GI surgeons - they work in one of the world's leading transplant hospitals and the majority of surgeries they perform are cancer-related. Their hospital is in fact joined onto the hospital where I was treated. & just to change the subject, they have the BEST wellness centre there (which was funded years ago by Olivia Newton-John). I spent many a day just hanging out there when I was having treatment.

Did you have lymph nodes removed after recurrence, or was it too soon to have more surgery? Just curious - are the scans you have CT only or PET/CT ?

Thanks again Helen for quick reply - all the best for Tuesday, Ruth

January-2016-UK profile image
January-2016-UK in reply to ruthg55

No, I've not had any nodes removed. I did ask at recurrence if the para-aortic nodes could be removed by surgery and, this is difficult to believe, I cannot remember why I was told no. Having said that, when one of the nodes was biopsied for a trial, I was shown on a screen where the probe was moving, near my kidney and a tube (it did have a more technical term than tube), then another tube and how important they mustn't hit this or that. So it can't be easy and there's always a risk of lymphodeama although that wasn't the reason I was given.

My proposed trial has a whole paragraph for a title, details are here : clinicaltrials.gov/ct2/show.... If I have sufficient growth, I'll be on a three-weekly schedule which will really suit me as I hope to visit my sister in Sydney in November.

All my scans have been CT, I've never been offered a PET scan. I've read that the two read together give a better picture.

ruthg55 profile image
ruthg55 in reply to January-2016-UK

Hi Helen .... thanks again for your reply, sorry I didn't reply sooner. Yes, I think the nodes are in a tricky spot (I'm trying not to think of that too much) hence the gyno. surgeons preferring the abdominal surgeons to do it as that is where these nodes are. Thanks also for trial link, which I'll have a read through now.

Re scans, I know in Australia they'll send you for a CT scan first (it's much, much cheaper apparently) and if something shows up on CT then you will get sent for the PET scan - my understanding is PET scan gives a better image of tumour and can differentiate between benign and cancerous tumours.

Hope all went well for you on Tuesday and you get on that trial so that you can come out to Australia. Sydney is beautiful! Take care xx

BeeWild profile image
BeeWild

No experience of your para aortic recurrence mine is near my bowel so I’m now on weekly taxol and a trial drug to start soon, but just want to say here’s hoping whatever treatment option you choose gets you another long remission xxx

Please keep us updated and best of luck xx

ruthg55 profile image
ruthg55 in reply to BeeWild

BeeWild (I like that name) - thank you, thank you for your words of support and another long remission would be bliss! You and Helen both seem to be on weekly taxol and waiting re trial drug. Would you have more info re that trial or is there maybe a link I could follow?

Hope also your treatment is working well and you get on that trial soon and have a long remission. A friend of mine told me that the best advice her oncologist gave was to think of this as living with a chronic manageable disease.

Best of luck to you too and I will keep you all updated xx

BeeWild profile image
BeeWild in reply to ruthg55

Hi Ruth the trial I’m on is called CEBOC

And if you look at my previous posts there are links in there or type CEBOC into the search on here and it should come up x

It’s only being run at the Christie at the moment, not sure where you’re based?

Take care

Bev xx

ruthg55 profile image
ruthg55 in reply to BeeWild

Thanks Bev, I will read your previous posts and find out about the trial - however, I live in Australia (Melbourne) but I will also ask at my next appointment. All the best, Ruth xx

BeeWild profile image
BeeWild in reply to ruthg55

Oooo bit far to come for a trial lol! I love Australia was there just before my diagnosis last year 😁

ruthg55 profile image
ruthg55 in reply to BeeWild

I wouldn't mind getting sent to the UK for a trial, LOL !! Hugs xx

I had a very similar experience to you. Also HGS. Diagnosed December 2010. Recurred in para-aortic 2013. Key-hole surgery August 2013, performed by a gynae onc surgeon ( like the others my understanding is it's best to have the specialists). Unfortunately I had a post surgical hernia (bit of bowel trapped in a port hole) and ended up with open emergency surgery to repair it. Apparently such hernias are not too uncommon. Anyway I might just as well have had the open surgery to start with! What the surgeon found was a lot more nodes than what had shown up on the scan and in other areas, especially around the upper digestive tract ( hence your people's approach perhaps). He described them as "sticky". I had second line chemo afterwards. This again got my CA 125 back into normal range. But I've since had two more lines of chemo, always for lymph node activity, in different areas. Interestingly, the para-aortic ones have not been amongst them. I'm awaiting scan results but my last one showed stable disease in lymph nodes in the main.

Good luck with it all.

ruthg55 profile image
ruthg55 in reply to

Hi Mac ... many thanks for your reply. Gosh you have been through a lot - just had quick read at your post. You must be made of sturdy stuff. Hope all is still stable with your next scan results. The advice from my gynae onc team is that the upper GI surgeons would be the experts for the para aortic LNs. Yes, I'm a bit worried that they will discover more nodes (its hard to believe it would only turn up in one - or maybe it's only at cellular level in other LNs). I'm a bit confused with what shows up on scans. My understanding is that it is only with a PET/CT scan they can tell if tumour is cancerous as the tumour "lights" up with the radioactive injection. I also have an incisional hernia (seems very common) from my first op but, touchwood, so far not bothering me. Was told it was nice and wide - which sounded awful to me, but means hopefully less likely to cause obstruction. Wishing you all the best and good luck with your results, Ruth xx

in reply to ruthg55

The scan question confuses many of us!

I've recently been taken on as a patient rep on the Radiology expert reference group in a collaboration of which my hospital is a part ( same as Helen's), and I hope to get a clearer understanding of it all through that.

I have had both but not the PET recently. I vaguely have the feeling I had those as part of the prep for surgery, so perhaps the two together give a better view of what they'll be tackling.

I know: my back story looks dreadful, but you know, I feel very well and am active and enjoying life. Indeed I am within sight of the finish line of the NHS couch to 5k programme which aims to get you running for 30 minutes/5 km. In week 1 I felt like shouting at the encouraging coach "hang on a minute I've got two cancers and I'm 65- give me a break" at the prospect of running for 60 seconds, but here I am coming to the end of week 6 and will be doing 25 minutes without a break tomorrow, albeit not very elegantly.

We had a wonderful trip to Oz October/November last including a week in Melbourne (taking advantage of old man's meeting there) and then the Grampians and gold towns. Indeed I had to have a blood test done there and email back to my team here in the UK! Helen and I have another clinic friend whose sister has just gone back to......Sydney? And I've just spent a few days in Italy with my dear friends from Sydney.

You've certainly got us all into chatty and lengthy mood! xx

ruthg55 profile image
ruthg55 in reply to

Well thats good if we're all in chatty mood - its nice to hear about life continuing as well as living with cancer! Think you are amazing to do a 5kms run. I walk a lot, but I'd been stuffed running. There is a lot of research now - hear about it in the news here all the time - is it the same in the UK? - about the benefits of exercise with people with cancer. they say the quicker you get exercising the better - helps eliminate a lot of the chemo effects. There is a specific program. I was registered to do it, but it was in Melbourne (which is 100kms away), so I'm waiting till the trainers here get trained (any excuse for me).

You probably visited the town I live in when you were here - it's Ballarat (one of the oldest gold mining towns). They have an open air museum recreating the goldrush days - its a big tourist spot. We moved here from Perth, WA about 5yrs ago. Although when we were in Perth we kind of lived between there and the Philippines (where my husband is from).

Trip to Italy sounds perfect. I've had a real longing to visit there for a couple of years now (spent a little bit of time there many years ago). My husband & son have never been, so think I better start planning! We hope to go to Japan next school term break in September. So I better be well for all these trips I want to make :)

Keep well and enjoying life. Good luck with the run!! Hugs xx

ellseybellsey profile image
ellseybellsey

Hi Ruth similar dx 3c April 1(, had neo adjuvant chemo the interval debulking surgery then a further 3 chemo, I was declared NED September 16.

My numbers went from 13 to 17 in November, but was told it’s nothing to worry about, fast forward to Feb 18,I had bleeding and pain below right rib cage and stomach distension.

Examination showed 2.5 cm lesion in vaginal vault so was sent for ct and pet scan, both showed activity above liver pelvic lymph nodes, and vault.

I have been very lucky gyae onc removed vagina vault with robotic surgery and I have started chemo again.

Sending you virtual hugs.

Ellsey xx

ruthg55 profile image
ruthg55 in reply to ellseybellsey

Gosh Ellsey I have no idea what a vagina vault is, but being done by robotic surgery sounds impressive. Hope all is going well for you now and managing this round of treatment. Thanks so much for the virtual hugs and thoughts - same to you. Take care, Ruth xx

lesleysage profile image
lesleysage

Hi Ruth,

My recurrence of stage 3 clear cell was in Jan 2013 with tumours in para-aortic lymphatic system very close to my aorta and renal artery. On Valentines Day in Feb 2013, the team in London with surgeon Prof Christina Fotopoulou followed the crieria of DESKTOP III trial which ran world-wide between 2010-2015 to test out any benefits of a second major op before any second chemo regime rather than the traditional half chemo - op - chemo for another 3 rounds. Preliminary results at the American Society of Clinical Oncologists at last years conference are showing that more women are havng longer remissions with surgery upfront and there are indications a few of us may move into overall survival when the final collation of data is done in 2020. I am still in remission so hoping I'll be part of that number!

The criteria for DESKTOP III will still be available for your team to view. A short article was in Ovacome's Newsletter last Autumn on page 7:

ovacome.org.uk/wp-content/u...

Good luck Ruth and warm wishes for a good day, Lesley

ruthg55 profile image
ruthg55 in reply to lesleysage

Hello Lesley .... sincere thanks for all the info you have shared. And such lovely news re your remission - 5yrs!!! Here's to many, many more years. Did you have many para aortic LN's removed and if so did you have any problem with lymph drainage? And can I just ask what chemo treatment did you then receive after this surgery? I suppose if I read your posts this info will all be there. Keep well - we need to hear positive stories like yours! Ruth x

lesleysage profile image
lesleysage in reply to ruthg55

Hello again, Ruth,

At initial daignosis and total abdominal hysterectomy in June 2011, the lymph nodes directly adjacent to the ovaries were 'marginally malignant' so these were removed. But not the whole lymphatic draining system back to my heart as this first team either didn't think it neccessary or have the skills. The recurrence was just the two tumour in the remnants of the lymphatic system left by the first team, very close to the aorta and the other the renal artery.

Yes, 'drainage' problems in my groins until about 6 months ago when I became aware I wasn't pulling away my knicker elastic as I had done, especially on the left side!!! The London team reassured me that if the swellings come and go and are tender then they were very unlikely to be the cancer again. Advice, again from an issue of Ovacome newsletter, is keep up regular exercise and make sure you keep an eye on your weight. This latter isn't a problem for me as the first chemo, usual 'gold standard' carbo/taxol scuppered my appetite completely & I lost almost 2 stone off 9.5stone and on a 5ft 6in body that didn't look good!!

Second chemo was the 'dose dense' carbo/taxol 7-day regime and added in every 14 days was Avastin. My body coped a lot better with the 7-day 'dose dense' regime and I didn't lose so much weight (I paid a dietician to help me work out how to pack a powerful nutritional punch into a small volume of food) but felt absolutely 'floor-clothed in the bottom of a bucket' by the end.

My OC is clear cell carcinoma, which is resistent to chemos, so I think the medics feel the second operation, in which the whole lymphatic system draining my 'redundant girly bits' (I was just 65 at diagnosis and not quite 67 at recurrence) was removed right back to the heart, must have got out every cell out. In hindsight, and in theory, someone could argue the chemo was irrelevant but I just wanted 'belt and braces'...give the b****r as big a headache and fight for its survival as I could cope with. Although strength and stamina considerably diminished and peripheral neuropathy in feet and hands all the time now, I don't regret it one bit. Am just building a life which is different by not asking so much of myself physically and socially! A gentler life but just as lovely.

Sorry, will shut up now and send you warmest wishes for this next phase of treatment...so pleased you have such a good team; they will really be rooting for you as well as everyone here!

Lesley

ruthg55 profile image
ruthg55 in reply to lesleysage

Hi Lesley, loved reading everything you have said - so no need to shut up :). I think all the info women share hear help us to ask more relevant questions come appt time and provide such a dictionary full of experiences that we can tap into. I know first time around when I had my meeting with the gyn.onc. he was pleased that I was 'well informed' about treatment options and then he could discuss these with me.

Many thanks too Lesley for the info on Desktop III. I was totally unaware of this. You were certainly in the best of hands! I'll keep everyone updated (still not got my appt scheduled, though I called Friday to remind them). All the best .... Ruth x

Jingyu profile image
Jingyu in reply to lesleysage

hi Lesley, it is really good to read that you are still in remission after clear cell recurrence: my doctor told me she has never seen a clear cell recurrence patient gets back to remission.... but you are a great exception!!!! Please keep doing good and keep staying in remission!

lesleysage profile image
lesleysage in reply to Jingyu

Hello Jingyu,

Your doc has the same view as mine did, hence why that second operation was so critical. Sometimes I can’t believe my luck, so keep pinching yself and get on enjoying as many days as I can, albeit at a much more gentle pace. I am beginning to accept there are moments when I almost feel guilty for being so lucky but I tell myself off as guilt is a limiting emotion not an ‘enhancing’ one I’ve found.

Thanks everso for your good wishes .... mine back to you.

Warm wishes on this hot day here in England.

Lesley

lesleysage profile image
lesleysage

Hi again Ruth,

Couple of extra bits:-

DESKTOP III does give your surgeon, oncologist some clear guidelines in the criteria to use to decide if surgery is suitable and your team can find these out.

'Engaging with' your disease by gaining information, asking questions, discussing options until you feel the choice on treatment is your decision plus what my GP called focus on 'growing healthy cells' so that we take the best platform we can for the medics to work with...are all now emerging, in research as well as just anecdotally from consultants, to be linked with longer remission periods.

I realised I'd always 'cared for' myself (fairly balanced ordinary sort of soul, not over drinking or over eating but enjoyed both) but this OC shifted me to 'taking myself seriously'. So, I eat 'sensibly' (my definition includes treats too). exercise well (but not fanatically at all) and rest well and for this I've taken myself down the paths of hobbies which require my brain to work whilst I'm sitting down. Like Mac27-UK I'm a 'patient rep' now so she and I meet on a couple of meetings over gynae cancer trials being run by Cancer Research UK - University College Hospital London and I'm a trustee for Ovacome, the charity that runs this forum, so they 'demand' my brain works too!! I'm on the last day of a 4-day weaving course at the moment and this is the first time in 7 years since the diagnosis, I have felt I'd be able to 'cope' with 6 days away in total, on my own, and working at a pace which was not set by me. My confidence faltered at the end of the first day, but a walk, some mindful meditation, a glass of nice red wine, some food and a few chocloates later I was 'back on track'. And now, am so thrilled with what I've learned and the ideas which are bubbling up in my head for future projects.

Somehow, even though you know it can all go pear-shaped at the next CA125 (now every 6 months) I am feeling so much better. The lady who shared about the metaphor of feeling like the 'Porcupine in a balloon factory' captured it beautifully, I thought. I am starting to roam free again but the quills and balloons may collide again...

Warmest wishes again. Lesley

ruthg55 profile image
ruthg55 in reply to lesleysage

Thank you so much Lesley for all your words of advice. Yes I do believe you have to engage as it helps the body and the mind. The consultant I see in Melbourne had a really good talk to me one time about how important the psychological aspect is too. He said it is something in the past that the medical profession haven't focussed on, but research is showing the benefits.

Good on you achieving the weaving course and for your future projects! Loved that metaphor (must use it sometime).

All the best Lesley xx

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