My doctors are not sure if my lymph nodes have cancer cells in them . Should I remove my lymph nodes before I start Chemo and Radiation?

Hi lovely ladies! I have an important decision to make and I will appreciate all the insights and any suggestion you may have.

I did a LEEP procedure 3 weeks ago where also a biopsy of my cervix which confirmed cervical cancer. I have a tumor growing in my cervix and some cells in the tissues around too. No evidence was found of any cancer in the organs around.The question is whether it is in the lymph node or not??

Couple days ago I went to see Doctor A. Doctor A only had my biobsy pathology report and my Pet Scan. My pet scan showed metabolic activity in my cervix and lymph node. However , Doctor is 85% sure that my lymph node has cancer cells.He said it could also be inflammation or fluid but he has a strong feeling it is cancer. So he recommends I staright away start Chemo,Radiation and Braketherapy.

Today I went to Doctor B. Doctor B is the one who did my LEEP procedure 3 weeks ago. Now, she is not convinced that it is cancer in my lymph node. She suspects that because I had my LEEP just 3 weeks ago, it could be scarring, fluid or something else showing up in my lymph node. She wants to take ALL my lymph nodes out and first check them for cancer. If they are not affected by cancer then its just stage 1A in which case the option is hysterectomy. However if they are cancerous I am back at stage 3C1 and we will have to do chemo, radiation and braketherapy.

Basically, just knowing whether the cancer cells are in the lymph node or no can make a difference between stage 1 and stage 3 which is a big difference when it comes to the treatment plan.

Guys… I am swinging like a pendulum between the two decisions! I have booked another round of consultations in the coming week with both the doctors to ask more about lymph node removal. However any insight, experience or knowledge from you all will be very helpful at this time for me.

  1. Is it worth taking out all my pelvic lymph nodes and then finding out that they have cancer in them and then I have to start chemo and radiation ?
  2. I love to cling to the hope that if I get my lymph nodes taken out, maybe there is a chance that there are no cancer cells in them in which case I get a radical hysterectomy and maybe after that I don’t have to do a harsh chemo and radiation!
  3. I read that lymph nodes are sensitive to chemo and radiation and they probably will get damaged anyways during chemorad. So then should I just go for the surgery and remove them anyways ?

Again… I will be consulting both the doctors and their teams again to come to a decision but if you can can talk from experience or have any inputs which can help me move in the right direction I will be very very thankful!!

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@Mona1 there is a good chance they remove lymph nodes during hyster. I had a total of 12 removed during my hyster. All negative but they usually remove some and check for cancer

Even with my negative nodes, because it spread to the surrounding tissue (which was so microscopic it was only discovered after surgery in the pathology) that I still required chemo / rads. I’m sure it’s terribly difficult to be getting two opinions, but maybe wait for pet scan and see what that shows

Hey @Kellybug221
They already got the pet scan which shows hypee metabolic activity. Now because I got a LEEP procedure done 3 weeks ago, the doc are not sure if that activity in my lymph node represents cancer OR scarred tissue and fluids from the LEEP.
Hence the confusion.
I know I may need radiation and chemo even after surgery but maybe the amount will be smaller if i get a hysterectomy first??
Right now if I get to chemorad right away, it will be 5 weeks of rad and every week a round of chemo (cisplatin)folloed by 2 brakytherapies which sounds harsh!

Wish I could give you clarity. It sounds like they need a better idea of what this “activity” represents. I’m under the impression the treatment is the same regardless of surgery. I had 25 radiation and 5 cisplatin. I do not need brachytherapy as my margins near my vagina were “widely negative”.

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@Kellybug221 How was cisplatin and radiation for you darling?
Did you have any loss of hearing or major bowel dysfunction due to cysplatin?

So my hearing seems fine. I get an occasional ringing that lasts a few seconds, can totally live with it and it’s not often. Bowels have been the worst of the side effects. Imodium does help. Now that I’ve completed treatment I’m hoping it starts to resolve. Right now the biggest struggle is fatigue. I sleep so much. Everything is doable. I’ll do whatever to lessen the chances recurrence

@Kellybug221
Thats so helpful to know! I keep hearing fatigue right? I mean I feel tired from working 3 jobs and Iam just a lazy person. I will obviously take leave from work for this. But when you say fatigue, isitlike how we feel when we have high fever? Are there headaches involved? Anypain? Did you manage to go for any walks during your on going treatment or do household chores?

First couple weeks I could keep up with everyday chores. The last week I’ve done very little. Sleep 12 hours at night and nap about 3 hours during the day. It’s just being very tired with no energy. I have some nausea, little appetite, but no pain. Every now and then I may get a little twinge in my peri area but nerves are so disrupted with treatment

Hi Mona1

I had a radical hysterectomy followed by chemo-radiation in 2017. Certainly I had far less brachytherapy than if I hadn’t had a hysterectomy first: just 2 sessions which each lasted about 15 minutes in out patients, no anaesthetic required. I had 6 sessions of chemo (cisplatin) plus 25 sessions of external radio but I think the latter might have been at a lower dose than usual - worth asking your medical team about this.

I had MRI and PET scans which, along with my initial biopsy results, supported a diagnosis of 1B1 (new Figo 1B2) cc; apparently my nodes could be seen in the scan images but didn’t light up. My lymph nodes were removed in a separate procedure (lymphadenectomy) and were negative, hence I went on to have the surgery. Post RH histology showed lymphovascular space invasion, peri-neural invasion and a close margin, hence the subsequent chemo-radio.

By far the worst outcome of my treatment has been lymphoedema but I think I’ve been relatively unlucky in that it started and progressed fairly quickly. I’ve heard that having lymph nodes removed plus having radio increases the risk of lymphoedema, compared to having just one or the other done, but I’m not sure about the evidence for this - something else to ask about? Even so it’s a minority of people who get lymphoedema.

x

Hey @Jazza thanks for ur reply !
So did u have any complications or know people getting complications who go into chemorad after lymph node removal ?

Im scared my tumor is too big - it’s 3 cms all ways, and I may need more radiation and chemo than you did , which could be tough to handle if I have all my lymph nodes removed !

Did they remove all your pelvic lymph nodes or they took only some ?

Hi Mona1

My tumour measured 3.8cm - that’s all I know about the size. I believe 4cm is the maximum that is operable and I was told I had a 90% chance of a cure with a hysterectomy. I discovered much later that my surgeon didn’t think I needed further treatment but he was outnumbered at the post-op MDT.

I’m not sure how many lymph nodes were removed but I think they aimed to get all of them. I remember, at my chemo-radio consultation, the oncologist said something about applying the radio so it would deal with any lymph nodes that had been missed.

I didn’t have any complications during my chemo-radio - just the usual fatigue, feeling sick and lots of diarrhoea. I’m not aware that one is likely to get more complications from chemo-radio as a result of having all the lymph nodes removed, unless you count an increased risk for lymphoedema as a complication. I got to know one other lady going through cc treatment the same time as me; she’d had her lymph nodes removed and, because they were positive, wasn’t able to have a RH so went straight to chemo-radio. She had a bit more of a problem with chemo-radio than me, in needing blood transfusions to bring her blood count up, but managed to complete the treatment.

Happy to try and help if you have further questions.

x

Hi @jazza! Very helpful info. Yes so thats a chat I will want to have with my doctors about the removal of lymph nodes.
Sounds like I could be in a situation like urs where I amy have to do Chemo Rad anyways after a surgery somaybe go for a Chemo Rad anyways!

I just want to pipe in and say that I developed Lymphodema from having pelvic lymph nodes removed and I wish someone had explained to me just what an impact it can have. I developed this over a year after treatment so it can take quite a while to surface.
I appreciate that it’s not a life-threatening condition, but it IS an everyday reminder of the long lasting impact of being diagnosed with cervical cancer.
I also think it is much more common - even more than 1 in 3 treatments will result in lymphodema.

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hi @gnasher87
Thank you so much for chiming in! Yes I am reading all the time about lymphodema. Im more worried about going into chemo rad with the absence of lymph nodes to protect me in case I have to do chemorad.
Thats a question I guess I have to ask my doctors.
Did you get your lymph nodes removed due to cervical cancer?
May I ask what stage was yours and what was your treatment plan?

Hi gnasher87

Sending heaps of empathy about how significant the impact of lymphoedema can be for some of us - physically and mentally. There are a number of posts on this forum about lymphoedema and I’ve commented on quite a few of them - if interested search on ‘lymphoedema’.

If you have any questions I’m happy to try and help.

x

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Hi @Mona1
Yes I had cervical cancer. The lymph removal was part of a radical trachelectomy to remove my cervix and Adenocarcinoma. I actually don’t remember what stage I was, or the size of the tumour as it all happened quite quickly, but I found out later I had around 10-12 nodes removed from both sides. Apparently that’s quite a normal number, but I didn’t realise I even had that many to begin with!

I guess I just wanted to make the point that those lymph nodes are way more important than I ever thought they would be and that I wish I had been more aware of the potential consequences and fought a little harder to keep mine. But, that’s my experience and it might not be yours.

Whatever you decide to do will be the right choice no matter what happens.

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I’m heading to the ‘In it together’ event this Wednesday - Have you heard of this?

https://www.inthis-together.co.uk/itt-live#:~:text=The%20first%20ever%20In%20This,hope%20you%20can%20come%20along.

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hey @gnasher87 I have not but I will check it out. I am based in USA . Is this in the UK?

hey @gnasher87 I just spoke to Doctor B who is one of my doctors and is keen on surgery and removal of the lymph nodes, and she made itsound like its totally not a big deal. But I grateful for all your insights here. She said she will remove like 30 lymph nodes.
I am trying to set up another call witha different doctor and hear his opinion on lymph node removal thing. Hopefully getting close to a decision making.

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