I posted last month around a discussion some of us were having as to whether Covid / vaccinations have caused an increase in some patients CA125 and also possibly causing swollen lymph nodes.
I had a second CT scan still showing swollen lymph nodes Apparently it is cardiophrenic so the lymph node nearest the heart. Oncologist does not think it’s to do with Covid and has mentioned possibly needing radiation as biopsy cannot be performed, too close to the heart.
I’m awaiting a PET scan but there’s a backlog due to machine failure so she said it would be up to a 4 week wait, half of which has passed but no date yet. Having researched the cardiophrenic lymph node I am worried now because it says there is direct connection between this and ovarian cancer. Wasn’t too concerned until I read that so goes to show sometimes information can be more worrying?!
Just wondering if anybody else has any experience or knowledge of this.
Love and hugs to all Teal ladies on here struggling and also coping with this disease
Many thanks
Claire x
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Barmycharm
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This happened to me. Activity shown in lymph nodes in my chest and it was thought it may have been a reaction to covid jab. They waited about six weeks after my second va ccine and gave me another PET scan and sadly still there with fairly low activity. I am on watch and wait at the moment. Have anotherscan on 6 August. Are you in UK I didntknow they gave radiation. My understanding is that I will have to have more chemotherapy. Do please keep me updated. I was told I have an unusual spread and it sounds as tho you may be the same.. Sending a hug x
Hi LizzieanneThank you for replying. Exactly the same for me, they waited 2 months to do a second CT scan to give the swelling time to reduce but it was still there and slightly larger in the second. My oncologist also said rather than push me forward for priority PET scan she felt giving it a little more time would be beneficial to see if there’s more growth.
Yes I’m in the UK in the London area will have the Scan at Barts.
It sounds like we are definitely on the same path.I am trying to not think it’s a recurrence but do have a nagging feeling about it.
Can I ask what stage you were at on diagnosis and how long you’ve been in remission?
I will certainly let you know what happens and please let me know how your next scan results come out. Watching and waiting is tough isn’t it. Big hugs to you too xx
I was diagnosed in January 2002 with stage 2 C i just had six chemo sessions of taxol and carboplatin. They never gave me a scan just blood tests to check on CA125 which when diagnosed was only about 28. I was checked for ten years. My first recurrence was diagnosed in May 2020 in lockdown. I thought I had a bad allergy to tree pollen but it was a pleural effusion caused by thereturn of OC. A big shock. It is mainly mets which didnt show up on CT scan but found with PET scan. In my bones on liver but not in main organs but in lymph nodes. At the moment no sign of bone mets after having same chemo but still low activity in lymph nodes. Was on rucarapib for almost six months but it didnt work for me. I am BRACA negative. It is certainly very hard watching and waiting but I feel fairly good since stopping the parp. I try to think how lucky I have been to have had 18 years free from OC when I see other ladies recurring very quickly. I wont know my results until I see my oncologist on 16 August. Will let you know. Best positive wishes to you
Hi Barmycharm. Just seen oncologist for results of PET scan and my nodes have increased quite a lot so they want to start me on same chemo of taxol and carbo. Hair is just getting a decent length so that will be gone again, a certainty, wish that the stabling of lymph nodes was. How are you doing
Hi LizzieanneReally sorry to hear this. I know you were expecting it but still it’s hard to face. Soul destroying to know you will lose your hair again just when it’s regrown to a decent length. It’s not a nice mix of chemo drugs but at least you know it’s doable and you can get through it like you have before. I really feel for you having to face it all again. Keep going and beat off this nasty disease.
I had my PET scan at UCL on Saturday so won’t get my results till September 2nd when my next oncologist appointment is booked for.
I’ll let you know when I get the results. I will be thinking of you and sending you big hugs and best wishes xx
Hi how did you get on with your appointment for your new chemo regime? My Pet Scan results aren’t great .There’s 3 areas of growth 2 in cardiophrenic lymph nodes and 1 in diaphragm. They are small atm but too awkward a place to biopsy or operate so my oncologist is advising watch and wait till another scan in 2 months time. Feel a bit shocked and in limbo as know it’s just hanging on for the inevitable but she did say the next chemo combo won’t make my hair fall out! Silver linings?!
I’m on my way to Devon with my hubby for a weeks holiday with my daughters their partners and gorgeous granddaughter so I have an immediate distraction thank goodness.
I will try to push it to back of mind until the next scan looms.
Have the most wonderful time with your family. Going away is a great tonic and you can almost forget for a while especially with your grand daughter being with you. My nodes are deep in my chest so not sure if that is same place as yours. I am going to be on carboplatin only, as taxol has given me bad neuropathy. I was concerned but onc said carbo the killer taxol just icing on cake. I had a bad reaction to carbo so have to have desensitising tablets day before. Waiting to hear from hospital date to start. They will scan after three sessions to see if working. Hair may thin but not come out. Keep me up to date on your situation. Happy happy holiday xxx
If it helps l had lymph node removal that was çancerous then combo chemo. Scan after showed enlarged lymph nodes in other areas but they have gone to normal over the last 12 months don't know why but l believe they can enlargeWith a virus in your body lm just grateful there normal. So not all lymph nodes are a problem we just think they are. Sending love and hugs SheilaFxxx
It would be wonderful if it was the vaccine that has caused mine to light up on scan as they werent there before. Will wait to see what this scan shows.
Yes you are right. Lymph nodes can enlarge when they are reactive. I have experience of this because of a chronic condition - absolutely nothing to do with cancer.
Yes and we do tend to worry about things don't we, its all what if but most of the time its need less thank goodness. Just read your story sounds like your doing amazing thank goodness. Sending love SheilaF xx
Hi Sheila Yes of course you’re right that not all lymph nodes are cancerous. I was really just thinking it would be the virus causing mine to be swollen. But that link from that particular lymph node to the ovarian cancer made me think more of it. My oncologist said they don’t often remove or biopsy that lymph node because of proximity to the heart hence she was saying that treatment would probably be radiotherapy. I’m BARACA negative but do have another hereditary gene which makes me more prone. Still I shall try to remain positive until I have the scan and results and take it from there.
Hope you are feeling well again now and so glad for you that your lymph nodes have gone back down
Thanks Claire l will know how l really am when l get my blood tests & results from CT scanOn the 5th Aug please god they will be fine. Take care & love SheilaFxxx
Yes thank goodness my scan showed no new cancer brilliant everything stable still in remission. My blood tests weren't back on the Thursday so l rang on Monday and they were fine phew what a relief. So because its been nearly 2 years clear they've reduced my check ups to 6 months instead of 3 months great news really. But then when l got home l thought a lot can happen in my body in 6 months so l going to ask my GP who l think is great if he'll do my blood tests in between l am actually going to ring him in the morning lm sure he wont mind always think its best to be safe than sorry.
Have you had your results yets , please let me know about your results 🙏. Thank you for being so thoughtful l appreciate everyone on here its lovely to have support from others that really understand our thoughts and fears. Hope & love on here which we all need. Sending love & hugs 🤗 and hopefully some 🌞 very soon xxx
That’s great news for you, so pleased to hear that you are stable. Long may that continue for you. I know what you mean about being moved to a 6 month check up, on the one hand it’s so positive because you’ve been 2 years in remission but then as you say it’s a long time to go between checks and you still have worry as to whether something may reoccur during that time. Hopefully your GP is accommodating you with the in between blood tests to give you some peace of mind.
I meet with my oncologist next Thursday for my scan results, so fingers crossed for good news.
Good luck with your results, l will keep everything crossed for you. I rang my GP and he agreed and thought it best to do my blood tests every 3 months he's a little gem and lm lucky to have him. Its only because with me the CA 125 seems to react so its a good indication its not the same for everyone just want to make that clear some people have naturally high readings and nothings wrong its just normal for them so l don't want anyone worrying. Sending love & hugs SheilaFxxx
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