surgery and chemo for one enlarged lymph

[Bluetilly]

Please has anyone had surgery and/or chemo for an enlarged lymph node? I was shocked to hear today that i need this. Worried and a bit frightened. Please help.

Bluetilly

[Lyndy]

Is this a recurrence Bluetilly? And are you symptomatic? I had a lymph node showing on scans way before I was having symptoms but they put me on watch and wait. If you are not sure about the advice given by your oncologist, you can ask for a second opinion x

[Bluetilly in reply to Lyndy]

Thank you Lyndy. It’s my first recurrence. I have no symptoms at all and the node is less than a centimetre but they seem pretty sure it’s cancer. I am still in shock as I assumed the advice would be to watch and wait, as you say. Really grateful for your reply… I feel a bit less alone now.

[Lyndy in reply to Bluetilly]

Why not challenge them…why can’t you watch and wait? Are they worried that you might suddenly come down with something? Bear in mind that I did eventually get symptoms and just at the point where everything got delayed by the first lockdown… so I got very ill very quickly. But I had 2.5 years on watch and wait… only because I asked the same question as you to the eager young registrar who wanted to ‘get on with it’… don’t be pushed into it, ask them to justify their decision xx

[Bluetilly in reply to Lyndy]

Thank you Lyndy yes I think you’re right but it’s quite hard to challenge the experts! I will screw my courage up. Really appreciate your ideas

[Tillymint61 in reply to Bluetilly]

There are lots of experts with different opinions on what is best for you so don't be scared to challenge. I always ask them to explain in simple terms, that I will understand, why the course of action they are suggesting is necessary or preferable. There are many examples in this group of ladies getting second opinions so they should be used to patients wanting that.Wishing you luck with outcome.x

[Lovedogs41]

Hi this does sound a bit rushed to me.It may not even be cancer related.Like Lyndy says challenge them,ask questions,don’t go along with something your not in total agreement with.A second opinion would be useful at this point I think.

Good luck x

[Bluetilly in reply to Lovedogs41]

Thank you Lovedogs I think you do have an important point. Why on earth do I feel nervous about challenging their view? In other areas of life I am not at all diffident. This has sort if diminished me. Really appreciate your thoughts

[SarahBa in reply to Bluetilly]

As Lovedogs41 says this may not even be cancer. I had four lymph nodes removed when I had my debulking surgery. I did know before surgery they would be removing the lymph nodes as the scans they had done indicated to my Onc/Gyn team that they may be cancerous.

On checking my pathology report for you to see the size of the lymph nodes the largest was 1.8cm and there was no cancer found. I feel like they are jumping to conclusions and do also believe you need a second opinion.

[Bluetilly in reply to SarahBa]

Thank you so much x

[Lovedogs41 in reply to Bluetilly]

Sending hugs! Do what’s right for you x

[Bluetilly in reply to Lovedogs41]

Thank you so much x

[organicinna in reply to Lovedogs41]

may be it will safe life ? I dont believe they like to cut people for minor problem/ Its time and money.

[SarahBa]

I hope you don't mind me asking but did you have any lymph node involvement when you were first diagnosed?

[Bluetilly in reply to SarahBa]

No I didn’t, SarahBa, it was just a tumour on ovary which the surgeon said had been totally removed and all my blood tests have been the same ever since the first one. It took me completely by surprise today. Thank you for responding to me

[ruthg55]

Yes Bluetilly I had recurrence LN removed by surgery (no chemo), but mine was 2.5-3cms and I had symptoms, raised CA125 and a PET scan to confirm it was cancerous, so that is why my surgery went ahead (it was major and I was reopened from diaphragm to pubic bone). Took about 3mths though before I had the surgery, so it wasn't a rush job. Like you, I was extremely terrified, but that was 4yrs ago now and I have been fine since, touchwood (except hernia repair due to surgery). Depending where it is - and if it is cancerous - maybe you could ask if radiotherapy is an option. I was told at a later date, after surgery, by another oncologist that maybe I could have had radiation therapy instead of surgery. Sounds to me that you have time to think this all through and discuss with your team. Sending hugs from Australia and wishing you all the best x

[Fred22]

Hi BluetillyI had surgery to remove a retro peritoneal lymph node at the end of November last year. It was a recurrence of my 3B clear cell cancer but they originally saw it in around July 2020 and they watched it for nearly 18 months before deciding to operate. It grew vv slowly and I had no symptoms at the whole time. CA 125 also stayed within the normal limits the whole time. But it was growing slowly and in the end they were worried it would become inoperable as it was v close to my kidney and aorta. It was a big surgery but actually supervised by specialist renal surgeon and went really well. Although the watch and wait period was difficult I think it was a good thing really to make sure that it really was suspicious - I had every sort of scan in that time and I know they thought hard about putting me through another major surgery. But I am now doing well - tbh the second lot of chemo bothered me more than the surgery. Happy to try to answer any more questions is you have any.

Fionax

[Robbo16]

Hi - I had a reoccurrence in 1 lymph node in pelvic area that only showed up in a PET scan.

My CA125 was rising every month but they didn’t offer chemo as they said they couldn’t until cancer was confirmed via histology post surgery. I was told this was standard protocol.

I had secondary debaulking to remove the node and 9 others next to it just in case. They also closely checked all other organs for cancer. Histology confirmed only the one node was cancerous. I was then given the option to have follow up chemo straight away or have a break from treatment. I opted for the latter and feeling good at the moment. Blood test scheduled for October so we shall see.

Good luck with whatever you decide x

[Realistic]

Please don't panic l had debulking op and they said l was clear that was late 2017 they kept checking my C.A 125 it went in the thousands so CT me and saw enlarged lymph node. So l went in for biospy it was in the bowel area anyway when l woke up they said they'd taken the whole thing out this was 2019 then l had 6 months chemo but lve been fine ever since.Its when they dont find it then its problem mine was cancerous although they really didnt expect it to be the surgeon said after that there not usually cancerous . So try not to worry they will sort it for you. Love ❤ SheilaFxxx

[Maus123]

Hi Bluetilly. My recurrence in 2018 was diagnosed via 2 slightly enlarged and 'active' (i.e. lighting up in a PET scan) lymph nodes in combination with fast rising ca125 marker. It still seemed a small thing to warrant such a big intervention (my choice was laparoscopic or laparotomy surgery with no chemo, platin only chemo or the full set, with or without Avastin). And I did get a second opinion before choosing an approach. In the end, I just went with my oncologist's advice though, and opted for the biggest treatment 'hammer' available (laparotomy, Tax/Platin chemo and Avastin). Turns out the initial assessment proved true... Of 32 removed lymph nodes, 11 were affected by cancer.

Before the marker rose steeply, I was on watch & wait for a bit more than 2 years, during which there was occasional observation of calcifying/enlarging lymph nodes as well. For a while, my marker also rose gently. But the expert assessment was that this is not too alarming, thus watch & wait. I guess the decision between watch & wait and starting treatment depends on several factors.

As other ladies mentioned, I wonder if you could not ask your medical team to help you understand the reasoning behind the 'treat now' vs 'watch & wait' recommendation better. Did you have a PET scan? Is your ca125 marker higher and indicative? In any case it might also be helpful to ask for a second opinion at a different hospital. And then make a decision on which recommendation or path to follow.

All the best, xx, Maus.

[organicinna]

Be happy and glad. I wish they do that for me . Nothing to be scared of. They do not like to cut people just for tiny little problem. That lymph node is probably important one. All the best keep us informed after pls xx

[Kblaisel]

I want to have my 3 enlarged and suspicious lymph nodes surgically removed or given proton radiation, but Dana Farber said that I should go back on carbo with avastin. I was kicked off the Capri trial because of the 20%enlargement in those lymph nodes. I researched another option and am being screened for another clinical trial at the Univ. of Virginia using a monoclonal antibody along with niraparib. Could you ladies tell me where you went for the surgical removal of your lymph nodes? That’s my preference. Thank you!

[bamboo89]

I can see that you posted a year ago about a swollen lymph node, is it the same area? If it is and its got bigger, then yes they might want to remove it. I had one huge lymph node in my groin removed at my original surgery, and then another 8 or 10 removed a year later on the other side - both were near the skin surface though, so the second surgery wasn't major surgery, didn't take long and I only stayed in hospital overnight.

[Bluetilly in reply to bamboo89]

Thank you for your response Bamboo89. I’m not sure if it’s in the same place but the one I had before got smaller when I had a follow up scan. Apparently near the aorta which sounds as if it could be deep but I really don’t know. I know it would definitely be better if it’s near the surface like yours.

[bamboo89 in reply to Bluetilly]

Yes, near the skin surface is easy to deal with. The aorta refers to a kind of cane shaped artery that first heads upwards from the heart, then goes straight down through the body, through the chest cavity, abdomen and finishing up in the pelvis. Your lymph node could be anywhere aside the route of that artery, so hard to know how difficult the surgery, and its recovery time, will be without knowing precisely where it is. Which is presumably a question you have not yet asked...

We're all different, but I always want to know the precise details when a procedure is recommended, so I'd be asking exactly where the lymph node of concern is located, how sure are they it must be removed and why, and how major the surgery (and your recovery) will be before agreeing. Without a PET scan, I don't see how they can be sure its cancerous, so possibly chemo might be necessary once they've extracted the node and tested it - if its malignant, then chemo (f you choose to have it), if it's not, chemo shouldn't be necessary, so I'd be asking about that too. On the other hand, many people prefer not to know and just go ahead with whatever is suggested anyway, leaving the responsibility entirely to the Oncology team, and as long as it's not causing excessive anxiety to do that, that's okay too... some people find it easier to just not know. Sometimes I wish I was one of those types, but I am absolutely not....

[Bluetilly in reply to bamboo89]

Thank you so much, that is really helpful. I like your suggestions of questions I should ask and I am making a list. I am expecting my consultation next week so I have time to collect my thoughts and, importantly, write them down so I don’t forget. I keep reminding myself that the oncology team are dealing with this all the time so it’s no big deal for them. Doesn’t alter the fact that it’s looming hugely in my life though!

[bamboo89 in reply to Bluetilly]

Glad you found it useful, but if you want to ask questions, here's another I would ask - what happens if you don't have the surgery and/or chemo? What happens if you only have surgery, or only have chemotherapy? You probably won't get a straight answer because they know they can't even be 75% sure, never mind 100% certain, but I'd ask it anyway and then consider carefully what they've said and make my own mind up. You are not obliged to do what they say, especially if the surgery is going to be difficult, in a hard to access place, and may leave you with a very much reduced quality of life; same applies to any chemo they may offer. Personally, if the surgery is not going to be too difficult and unlikely to leave me in a sorry state, I'd opt for that and refuse the chemo; or just the chemo if the surgery is difficult. I am in my early seventies, and that influences what treatment I will accept, but that's a decision only you can make. Good luck with it, let us know what you decide...

[SopSinger]

I agree with the other ladies about seeking a second opinion. It can't hurt and may help you decide which way to go ahead. Also it might be worth asking your oncologist what s/he would recommend if it was a family member with this diagnosis. Sending hugs!

[OvacomeSupport Partner My Ovacome Team]

Good morning Bluetilly,

I'm sorry to hear you are worried and frightened about your options around your enlarged lymph node. I can see several of our members have helpfully shared their experiences and made the suggestion to find out a little more from your team.

We would absolutely encourage you to speak to your clinical team for further information and clarity about the situation and your options.

Members have also mentioned getting a second opinion. If this is something you are interested in, you might find this Ovacome information resource useful: ovacome.org.uk/getting-a-se...

You might also find our information on treatments for relapsed ovarian cancer helpful as it provides some more information about active surveillance: ovacome.org.uk/treatments-f...

I find this Macmillan resource useful to understand the lymphatic system, plus how cancer that has moved into the lymph nodes is diagnosed and treated: macmillan.org.uk/cancer-inf...

Please don't hesitate to contact us if you would like to talk this through with our support team. As well as being able to talk through your worries and feelings around this, our support team can help you plan for the conversation with your oncologist or assist with preparing a list of questions to raise.

You can contact the support team on 0800 008 7054, or via email using [e-mail]. We are open Monday to Friday, 10am to 5pm.

Best wishes,

Jo - Ovacome Support

[thejoannabell]

I had an abnormal pelvic lymph node which was biopsied, but they didn't get enough viable cells to be able to really tell what it was. I got sent around to other oncologists, more tests, etc, only for them to decide it was a recurrence and I went through a second round of chemo. My first reaction was "take it out!", but they said it was so small they might not even be able to find it. Have they mentioned a needle biopsy as an option? As others have said, it sounds like a second opinion is in order.

[Bluetilly in reply to thejoannabell]

Thank you for sharing your experience. I had a PET scan today so will see the result of that mext week. Very grateful for all these responses as it helps me to feel less alone.

[Bluetilly]

I had surgery… quite major as took long time because node rather inaccessible, then I had chemo. My scans after surgery and after chemo were clear. It was quite a journey really and seemed a lot for one small node! But do accept whatever treatment they offer as these little problems can escalate. Let me know how you get on and I wish you all the very best.