Lymph nodes

[transf2856]

Hi I was diagnosed HGS peritoneal cancer April 2017 by finding a lymph node in my groin no other symptoms felt very well no ascites. Had 3 carbo\taxol then debulking surgery followed by 3 more chemo then scan was Ned. Had one year of Avastin. June 2019 found lymph node in right groin which was quite big CA125 was 12 and scan showed no disease in any organ BUT found multiple nodes in various places.Oncologist said I could have chemo just carbo no taxol but said she would prefer if I waited to see if there was any changes and would see me in 6 weeks and then scan after 3 months. How come there are lymph nodes but no evidence of cancer anywhere else. Hope someone can come up with an idea or has anyone had similar experience. Love to all Liz x

[Lindaura]

Dear Liz,

I am so sorry that you are faced with this particular presentation of Ovarian Cancer.

From what I’ve read, it seems that the OC cells like to invade lymph nodes and they can use them as a pathway for spreading to other Lymph nodes.

So, it’s great that you are feeling well, because that’s the best time to start treatment.

You might want to get a second opinion about your options for treatment. Personally, if I were you, I would start treatment as soon as possible. Perhaps Carbo and Caelyx, if it is on offer.

Still a second opinion might be wise...

So sorry you have to face a recurrence when you thought you were out of the woods.

Where do you live?

Wishing you the best of everything,

Laura

[transf2856 in reply to Lindaura]

Hi Lindaura thanks for reply I really like my oncologist and have had fantastic treatment so far at my hospital in Reading. I have more or less decided not to have chemo yet as she said the longer you can go without it the better chance it has of working, it worked well for me the first time around. She said I would only need carboplatin and if that didn't work this time they would have paxitaxol to fall back on. Hope you are well hun xx

[Lizchips in reply to Lindaura]

My ca125 is a 7. I have hoshimotos. Which inflamed my glands. All my CT scans are clean. Originally diagnosed in 2014.

[Lyndy]

Hi Liz

I have written a number of times about my ‘non recurrence’ featuring 5 lymph nodes‘bigger than they should be’ on my scans. The received wisdom is to wait for symptoms but I have been waiting nearly 2 years.... no symptoms. My oncologist now thinks that the nodes may be something else (I also have Rheumatoid) but so far they haven’t morphed into OC.

I wouldn’t worry too much about a delay in treatment... you need to know that you actually need it! Best of luck xx

[transf2856 in reply to Lyndy]

Thanks Lyndy for your reply all this information from others is so helpful and makes you feel you are not on your own. Wishing you well. xxx

[Lizchips]

You have thousands oh lymph nodes. I have some enlarged and am cancer free. I was told to take 1+0 billion probiotics and 2000 milg L lisine. It helps to calm the lymph nodes and send white blood cells away. Bringing down swelling

[Lizchips]

The rhematoidologist is who put me on lysine and probiotics

[Lyndy in reply to Lizchips]

Really? Can’t imagine my rheumy being so left field! (He’s a bit old school) but I have put myself on probiotics to counteract the effects of rheumatoid meds on my gut xx

[Hidden]

Hi Liz. Your story is remarkably close to my own, so I can shed a little light for you or at the very least, give you a good comparison. Diagnosed 3c in 2011 (exactly 8 yrs ago). My only symptom was swollen lymph nodes left groin and occasional belly-bloating. I too felt very well, in fact I'd done a 15km walk a couple of weeks prior. CA125 440. Pretty sure mine is also HGS tho no one seems certain any more. Definitely BRCA neg. Had op & 3 months of chemo. Another op (tumour "bigger than a baby's head"). Then 3 months more chemo. Straight into remission but told there was a 50% chance it'd be back in 2 yrs. 18 months later I felt those lymph nodes again, same place. My onc found them too, without me alerting him. So we both knew it was back - just needed to be proved. My CA125 was only 19. He ordered a needle biopsy (twice) into the lymph nodes but they showed no cancer. My onc said "it's like an egg: the nurse has put her needle into the white & missed the yolk". Next he ordered an ultrasound : 2 experts in different regions of the abdomen checked but neither could find any evidence of my recurrence. Then my onc ordered a CT scan; again negative. Finally a PET scan - THAT showed it. He wanted to "watch & wait" for the same reasons as your onc. My thoughts were that if the cancer was in the lymph nodes, then it had a ready-road to travel to all sorts of far-away regions that I didn't want it venturing to, leaving little seeds to start from again at a later date. But I thought I should probably keep my thoughts quiet. Indeed, a routine mammogram showed it in my left breast (and yes it was OC, not BC).

As luck would have it, my onc went away on long-service leave & I saw his partner. He said "We're starting a new trial, are you interested?" So he got me started on Carbo/Caelyx/Avastin (Avastin was the trial). Caelyx is not an easy drug to live with but it gets results. After the 6 months I went straight into remission but the Avastin has continued 3-weekly (now 5.5 years). I'm still fit & well but the avastin is beginning to give me a few problems but I give grateful thanks every day for that wonder-juice.

In my opinion the reason there's no evidence for you is that it hasn't been detected yet. But your onc is probably right that the cancer (once found) can be treated successfully further down the track. Good luck. I do hope it all turns out as well for you too.

Best wishes. Pauline.

[Ge0rg1na]

Hi Liz

You see from the above posts that you are not alone and that's reassuring for me also as I too have enlarged lymph nodes now. My onc has also advised a period of wait and see, so we are in the same boat.

My OC journey started with fallopian tube cancer in 2010 so I'm now an old hand at the waiting game but I remember my impatience to have treatment early on in my diagnosis. Now I am happy to wait if the team of experts suggest it.

I have chosen to give carbo another try next time in case I'm no longer completely resistant. If I am, then we can switch to taxol again so at least I hv a couple of options still.

Good luck with your wait. I hope you are well enough to live a fairly normal life during it. I know how difficult it is to put cancer out of your mind but I do try. It helps to know you're not alone, I find. Love Gina x

[bamboo89]

I've got it in my lymph nodes too - I had 3 nodes removed back in June because they were near the surface of the skin, but now there are other ones enlarged in various, deeper places. I was told I could have chemo (carboplatin) immediately after the lymph nodes were removed back then if I wanted, or I could wait - when I said I'd prefer to wait, the senior oncologist said 'probably wise, there's not much for the carboplatin to do currently'. Which is sort of the same as your oncologist saying it works better if you wait longer...

[transf2856]

Hi All thanks so much for all your replies I feel much better now and will do what my oncologist suggests and wait. Hopefully when I do have to have carbo it will shrink these lymph nodes my love to you all. xxxx

[Mptelesca]

So sorry you are going through this. I do have to say....thank you for sharing this. I have noticed that we all can approach whatever is next with more ease. We know more about the treatments as there are so many more different approaches to our disease. All the discussions and knowledge sharing has truly been uplifting and empowering.

Wishing you a long long NED. Best to you.

XOX

Marisa