lymph node in chest

[koza21]

hi I was diagnosed in 2017 stage 4 and had usual chemo and debulking surgery followed by avastin. Last scan just showed enlarged lymph node in mediastinal area of chest. 20mm in size. Ca125 is still 7 and all bloods are good. Feel fit. Oncologist wants to wait and scan in three months then consider more chemo. Anyone else had same problem and any advice would be gratefully received. Liz

[Lizzieanne]

I have !ow activity in quite a few lymph nodes, in my chest same area as you, one in neck and in tummy area, this is how my cancer recurred after 18 years. I have had carbo and taxol, a parp that didnt work, then carbo on its own. Last treatment was at end of December. Have had three scans, waiting for results of last one, other two showed low a activity but my oncologist suggested watch and wait so thats what Ive been doing. Ive had 9 months free of treatment which has been great, I have a feeling more chemo will be advised when I see her in a week's time and it may be weekly taxol. I have been very happy to watch and wait as know if I was worried I can get in touch and she will see me. I was given the option of more chemo but I asked my oncologists advice and agreed that watch and wait best for me. Mine is palliative care and dont want to feel ill with chemo if not truly necessary. I have felt well and been away for several holidays which was lovely and to my Grandson 's wedding. Wish you well with your decision.

[koza21 in reply to Lizzieanne]

Thank you so much for reply I think watch and edit is probably best

[Lyndy2]

Hello, my recurrence started this way but I had over 2 years watch and wait before a pleural effusion heralded a new phase and treatment. I was really well during that time and was glad I hadn’t rushed to treatment. Hope that’s helpful xx

[koza21 in reply to Lyndy2]

Thanks for reply I hope I get a reasonable time with watch and wait before chemo I wish you well

[Barmycharm]

Hi my first recurrence started 18 months ago with enlarged lymph nodes in chest. I’ve had several ct and pet scans and thoracic surgery to remove a couple and biopsy which confirmed metastatic oc. My oncologist is keeping me on watch and wait as long as possible whilst I feel reasonably well. Letrozole is an option although I’m not keen as it’s hormonal and I had years of bad menopause. Next chemo is on the cards but lymph node activity is low so managing to keep going treatment free atm. Best wishes to you xx

[Roulasim]

Hi!I faced the exact same problem 4 years after my initial diagnosis 2013-ca125 7 and 2 lymph nodes enlarged around the chest…my doctor advised me then to run some tests and the results point toward sarcoidosis…not cancer-nothing terrible that I managed to go through we some medicine-not a common disease but it can occur especially in women…

[SophieZ]

There is a test called a Circulating Tumor Cell test that originated in Switzerland in 2004 called the RGCC test. Some integrative oncologists utilize it in the US. There is a version of it that was FDA approved a couple of years ago. One company that does it is called CellSearch but there are a bunch more. This is a simple blood draw. If any circulating tumor cells (cells that have broken off from an existing tumor) or tumor DNA is found then they are able to tell where in the body the tumor originated as well as any genetic mutations. This could help with early recurrence detection as well as matching with treatments based on genetic mutations. This test is essentially a liquid biopsy and is able to detect tumors before they are even large enough to appear on a scan.

Most oncologists don’t use it for “clinical application” yet because its supposedly “new” technology even though its been around since 2004. MD Anderson just adopted it under standard of care at their practice 2 years ago. Your oncologist could order the test even if they don’t typically do so. This might give you a better idea of your situation instead of waiting and watching on scans. If any circulating tumor cells are found the original RGCC test can even test 53 types of chemo on your cells to find out if they are chemo sensitive.

There is a Bill in the Senate that was introduced in 2021 called the Medicare Multi-Cancer Early

Detection Screening Coverage Act that is pushing to have this test covered by medicare as a screening and early detection tool for the general public as well as a way for cancer patients to be monitored after treatment. I just spoke to my oncologist about it and after some insisting he agreed to order the test. This might help you have some peace of mind if you have a more accurate screening tool utilized like this blood test and a better assessment of your condition.

[soyoon in reply to SophieZ]

Thank you for valuable information. I will ask mine about it

[SophieZ in reply to soyoon]

Good! I think if more people ask it will have to be adopted as standard of care!

[Mariej2021]

That is really interesting information. I wonder why it is not adapted more widely. Are there issues with specificity? Considering the concerns over having frequent scans it would seem like an ideal way of monitoring for recurrence in between scans when someone is supposedly NED and when suspicious lymph nodes show up on scans. I must try to find out more about it in the UK.

[SophieZ in reply to Mariej2021]

My oncologist told me that sometimes technology outpaces clinical application which just means that they don’t know how to utilize the information from the test. So I said well I’m finishing treatment now and I would like the blood test to show me if the chemo worked or what my circulating tumor cell count is. That way I can use it as a benchmark moving forward. It is also more accurate than a CA125.

Don’t let them tell you its only for certain cancer types… it can work for any solid tumor cancers (just not blood cancer yet).

In terms of why its not adopted more widely…The original RGCC test can tell you if your cancer is chemo sensitive based on testing 53 different types of chemo on on any cells found in your own blood draw. This might pose a threat to the chemo industry as a whole because a lot of people would skip the chemo if they found out ahead of time that their cancer isn’t responsive to chemo. I would have done this test prior to my rounds of carbo/taxol had I known about it sooner. I think its just logical in terms of early detection and monitoring for recurrence. You have to remember that this is all a business with a lot of hoops for doctors to jump through so sometimes the politics of everything, the FDA, and drug companies get in the way of what makes sense medically.

[Lizzieanne in reply to Mariej2021]

Dont think we could have this on NHS I have heard about it but not with all the info given here. Wouldnt it be great to be able to access this inUK. Not sure whether I read it can be done privately but expensive. Thanks Sophie for your post

[Kaitlinsmum in reply to Lizzieanne]

Look on website RGCC-group.com

[Lizzieanne in reply to Kaitlinsmum]

Will do, thanks

[Kaitlinsmum in reply to Mariej2021]

Hi, I just found the website RGCC-group.com very interesting. An article claims the NHS has been at the forefront of liquid biopsy testing. But this technology has been around for 18yrs! A pilot study started in UK last year and could see RGCC rolled out to public in2025! How many deaths will occur within that time?!! It is being used in USA now so I dont understand why we cant just get on with it in UK. Extremely frustrating. Does anyone in pharm industry have an explanation for this delay?

🤯 😪

[Mariej2021]

Thank you for reply. It sounds incredibly useful. Would be keen to hear how the test goes for you if that is ok. I take it you had it ordered in US?

[SophieZ in reply to Mariej2021]

Yes I will keep you updated! My oncologist is going to do the blood draw within the next week or so and send it off to the lab that they use. I think it takes about 3 weeks to process so I will let you know when I get the results.

[Mariej2021 in reply to SophieZ]

Thank you so much If it works it would be so useful Best of luck with it

[Rlenesue]

I was stage 4 with primary peritoneal carcinoma, followed by chemo, put on niraparib for maintenance and was clear for 3 years till it stopped working and metasticized to 2 lymph nodes. One where yours is and one by my trachea. Got the all clear in July.. I was on Carbo, Avastin and gemzar. All worked well. I'm sure your oncologist will have a game plan for you too. Head up, we're here for you.

[Mariej2021]

I have not encountered this myself but I wanted to send my good wishes that you end up with a treatment plan which is the right one for you. I am 6 months post first line treatment with chemotherapy and recurrence and how to detect it does play on my mind. I did wonder in your situation if your scan was a PET scan? Supposed to give more info than CT but maybe that is the scan you have had? Warm Wishes xx