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Does anyone share with me the type of cancer I have - Supradiaphragmatic lymph node involvement of primary ovarian cancer?

I have always known that I have Supradiaphragmatic lymph node involvement of primary ovarian cancer, which is very rare. In lay-man's language that means the OC has metastasised to the lymph glands next to my breast but my breasts are clear. It's also metastasised to other lymph nodes in chest and neck and is on the peritoneum and surface of the bowel but because of the lymphs by my breast it gets a special name (deep joy, I'm not normal! ) It has not spread to the secondary sites of liver or lungs. It's so hard to find out information about my type of cancer and my oncologist has never had a case like it his entire career so can't give me much, if any, information about outcomes etc. I am just wondering if anyone here has my type of cancer. Mr Google is not my friend in this instance. Thank you girls.

Kryssy xx

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Hi Kryssy - mine metastasised to supraclavicular lymph node this summer - not the same node as you, but a similar thing I think. I am 3C, peritoneal involvement, major organs clear, have been living well for 2 years with OC. The sluggish lymph node has led to lymphoedema in my left arm, hand and breast, but it's been treated and is not painful. I have to wear a compression sleeve and do exercises to keep it under control. I have started weekly taxol and it will be interesting to see if the lymph node goes down while on this regime. I'm not sure where it's all leading, and I tend not to ask about future scenarios or google too much in order to stay happy, but in my own mind this is preferable to bowel or liver invasion.

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Hi. Those glands are up near the shoulder blade (clavical). I believe that these lymphs can be metastatic sites of recurring OC. Because I have them under my right arm right next to, but not in my breast, these are always associated with breast cancer and are usually removed when you have a mastectomy. I have more in my thorax and lower neck which are rare metastatic sites too. To be honest, I wish I didn't know. xxxx

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Yes ... I am a bit of a believer in the 'head in the sand' school of medicine sometimes! :)

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I looked this up, it is rare but there are cases reported in the literature, albeit in medical language I find difficult to understand. If it were me, I'd seek a second opinion regarding on-going treatment, either under the French health system or privately, even if it means a trip to Paris. You could make an occasion of it. Very often you can continue with the suggested treatment at your local hospital under the care of your existing oncologist and not necessarily have to travel long distances for continuing care.

There is a pinned post on this site, discussing getting a second opinion. It is based on the UK system but still will have relevant advice. Clinicians are used to this and doubtless your Dr G has already taken advice if this is his first case of this type. But a second pair of eyes looking at you and your records can be very useful indeed.

Trust you to be so rare!

All the best! Helen

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Thank you Helen. I'll certainly do some research for myself. It's a really bad time for me right now. I've been the subject of some vile and vicious lies and accusations from a disloyal and dishonest ex friend and they are starting to get back to me from people sick of hearing it over and over. It has pushed me to the point of thinking that I would be better ending my life now just to make everything stop. I'm seeing the GP later, if I can be bothered to get out of bed. I had to ring my counsellor this morning as I could feel myself slipping into a big black hole. I felt better after for a while but I'm sinking again. I don't want hubby near me as I don't want him to be upset when I die so am hoping he'll start to hate me. I don't even want to talk to my sons. I've never felt like this in my entire life. I feel I'm not talking to you as it's just my finger tapping on the Kindle and putting how I feel into writing but even pressing the send button it's as if I'm in a vacuum bubble. I am so lonely and sad and it's so hard to think of anything other than the cancer eating me inside and the lies that are going around. I'm an open and honest person who would never betray a trust. I assumed everyone was like that.

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Dear Kryssy

I am so very sorry to read about how you are feeling. As Helen says, you have many friends on this forum who are here to support you.

I hope your GP and counsellor were also able to help.

If you want to talk/email/instant chat/Skype I am here Monday-Friday, 10am-5pm (11am-6pm French time). Please do get in touch if there is anything you want to talk through.

Best wishes

Anna

Ovacome Support Service Manager

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Dear Kryssy, I have been there too please stay in there!!! A few months a go I was putting up with my nasty drunken neighbour next door to me. A smelly neighbour with a very dangerous washing machine under me & half dozen of my neighbours crazy & rude kids banging my door & screaming up & down the hallway. Then I had some beggars up setting me & to put the cherry on the top my ex father in law implied I was to blame for my marriage failing. At the same time I was on chemo I really could of done without all the sh*t.

I am glad you realised you were heading towards a black hole. I don't come on here so much now but saw it was you Kryssy & had to give my two bits worth.

I find the nicer you are the more sh*t they make up about you. I try very hard to stay a way from those kinds of so called friends but it's really harder said than done.

I am thinking of you please look after your mental health as well as your physical health. Take care love Cindyxx

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Hi Cindy my friend. I was almost about to take a shed load of sleeping pills last night as I felt so low. I saw the post from Admin and phoned Anna today. What an amazing lady. She made me see things from the outside, rather than from the inside of my bubble. Now it is clear and my old sparkle is coming back. I'm sure she won't mind me sharing that she said that the bad people needed me more than I needed them. They need me to keep the fire stoked so that they could continue to say the vile things. Without my response they have nothing so now they make up lies even bigger than before. I've also heard some really good news tonight about it all so I'm in happy mode (ish) tonight and so glad I didn't take those pills.

I hope you are well and happy too. Good health to you and love and big hugs about all the other stuff we've shared.

Kryssy xxxx

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Hi Kryssy, we have so much in common & when people tell me not to be bitter & let the pass go & also any up to date sh*t go as well. It's sounds almost patronising because they don't know what pain you have gone through.

Having cancer makes everything a lot worse. I know you gave me your e-mail but I really don't know how to use e-mail. I will try & privately message you & please don't hesitate to do the same if you feel low & need to chat. I come on here about once a week to keep an eye on my messages. Thinking of you love Cindyxx

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Kryssy, this is the time more than ever to cut out of your life the type of people who spread lies and vicious gossip. Ask your other friends to stop giving you any further information explaining that you are simply not interested. It will stop because you have made it stop.

Get out of bed and go and see your GP. Wash what little hair you have (it'll dry quickly) and put your make-up on.

Your husband is your sole mate you said and you love your sons and grandchildren. Keep reminding yourself of that fact. I doubt your husband is going to hate you, just likely be somewhat bewildered why you're not letting him help you.

Do tell your GP how you are feeling, you may need more counselling. Or even a Buddhist retreat or similar. Don't let your fluffy balls or whatever it was you called this get the better of you.

You have a lot of good friends you've made on this forum in a short time and have been kind and supportive to many.

I want to hear you are getting out of bed.......

Helen

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Kryssy,

Not the same situation I have lymph node involvement. Started off in the pelvis, abdomen and grown and by the end of last year it had spread through the lymph system to some of the lymph nodes in my chest some in the armpits and some in the middle of the chest.

In October I had a pleural effusion on the right side of my chest drained. It was milky in appearance and I was told it was something called a chylothorax. Fluid from my lymph system was leaking into my chest. Not sure the exact mechanism as nothing obvious is showing on my scans. It’s fairly rare and well it was a bit scary.

It’s still there but it’s remained stable. I suppose I am trying to empathise sorry I can’t give you more information on your condition. I think sometimes you just have to ride it with your team and wait and see what happens

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Kryssy - it is very easy to get a 2nd opinion in France and there are many, many treatment options here (and plenty of money sloshing around so no limits like on NHS). You must have all your scans etc so you should just call the nearest big hospital. I started out in Avignon, then went to Lyon, then Montpelier and I'm now treated in Paris. Good luck - Nicola

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Hi Nicola and girls

I will reply in a day or two but went to GP this eve. Heaven knows how I managed all the French whilst sobbing so much. He can't authorise a blood transfusion but looking at my plaquettes he said any lower and the hospital will give me one. Nothing else will do the job. He gave me some tranquilizers and a CA125 request for tomorrow which he thought might lift my spirits- that's if it's down. I will have a chat with Ovacome support and I thank them for caring.

Still very low and shut away from everything but have stopped crying about two hours ago. Ate chocolate. That probably helped. Still in a bubble though. Feel very strange. Maybe because I haven't fancied eating much today.

Thank you all for being there.

Xxxxxxxxx

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Up early and went to the blood clinic. I can collect the result at 5pm rather than relying on the post tomorrow. I just hope my CA is down a bit. Just a couple of notches will be a tonic.

I feel a little brighter today to be honest. Haven't taken any pills. They will remain in the cupboard probably. I've decide to answer my accusers and tormentors - by email - as I need to make my voice heard instead of hiding behind locked doors. I'll send it tomorrow. One in particular, who regularly commits sexual misconduct, will get the fright he deserves, especially as his wife opens all the emails. I won't repeat what he has said about me but as I'm just one of his many victims I know where he's going if he doesn't keep his vile mouth shut and his filthy hands off other women. As for the others, they have a similar Christmas present to come. They say, "Turn the other cheek" and that's what I always do. They also say, "Revenge is sweet". I think I have switched sides as just the thought of my Christmas Eve email is very cathartic. Perhaps that's why I feel better today. One of my friends said the other day, "Just draw a line under it all". That's all very well to say when it isn't happening to her.

Thank you all for being there for me. We have never met and yet I feel as if I have a whole load of sisters. It's a wonderful feeling. And you! Missy Helen - you made me smile when I needed it the most. So a big thank you from me. I may even extend the smile to a laugh today. If not today, then tomorrow.

Much love to you all

Kryssy the Fruitloop xxxx

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Change that last post. After talking to Anna from Ovacome for almost two hours today she has made me see sense and I won't even bother writing the letter let alone sending it. As she said, they need me more than I need them to keep their momentum going. They have actually done something really bad now which amounts to fraud - nothing to do with me - so they are hanging themselves without my help. I'm sorting out which knitting I'm taking to the guillotine.

If any of you girls have some issues then please call Ovacome. I didn't know you could do that until it popped up as a reply to my post. Amazing lady.

So watch out girls. Once Christmas is over I shall be back to my normal mad self. You have been warned.....

Love and bug higs

Kryssy xxxxxxxxxxx

Yes, I meant to say that... x

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I’m so glad you spoke to Anna, it is what I wanted to tell you to do but I lack the experience that Anna so obviously has.

All the best now!

Helen

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