Lymph Nodes - recurrence

Luci22

Hi all, I hope it's OK I made a new discussion topic, as I did a search and didn't find much on what I'm looking for.  I've posted on here a couple of times but have been reading along the way.  My mom was diagnosed with stage 3B OC in 2017 (brca neg).   She has just had a CT and was told it's likely a recurrence as the doctor see several enlarge pelvic lymph nodes.  We are all sad about this, as she's been doing so well with 3 years of NED.  Like everyone, we were so hoping it just didn't return.  So, he has told her she will likely be looking at chemo, maybe surgery.  I'm worried for her, especially now with this awful Covid in the mix.  

Has anyone had treatment for this type of recurrence, or had heard of this recurrence type?  I know everyone recurs differently so not sure where to get some help, or support while I wait to speak to the oncologist myself.  Can lymph nodes enlarge for any other reason?  She has been under a high amount of personal stress and I wonder if that could at all be related instead of cancer.  

Thank you, all the best.
Luci

Readersmaven

Hi Lucy @Luci22 as @Fearless - Vol Mod mentioned I'm also facing a recurrence in my lymph nodes. My treatment plan has been evolving and has changed a couple of times, something we need to deal with having a chronic disease. 

One thing you might ask about is possible radiation, if the recurrence is in just the lymph nodes. Apparently this is a fairly recent treatment for OC, but has been used with success (at least according to my radiation oncologist). 

I'm going to have radiation this week, with the hope that it will help delay a return to chemo for a few months as I only completed my initial treatment last May. I'm optimistic about it as I don't have any symptoms, at this time, and would like to enjoy the summer if I can. 

Certainly dealing with cancer during covid is both challenging and stressful. You don't mention where you're located but most areas of the country have great support networks and perhaps your mom might be interested in connecting with something like that.  Personally I have found both yoga and meditation to be very helpful in dealing with cancer and covid stress.

As our moderator has said, there's lots of support and ideas available Thursday during our weekly chat. Don't hesitate to reach out if you or your mom have questions, we'll definitely try to help.

All the best!

Luci22

@Readersmaven thank you for replying and for the good information.  I will ask about the radiation, hoping I can speak to the oncologist this week if he calls me back  It is a hard reality and we were hoping it wouldn't recur but here we are.  Covid has really put an additional fear into it all.  She will get her first vaccine on Friday, the Pfizer one.  

I keep asking myself, is there a chance it's related to stress?  She has been under a lot of personal stress and I had wanted to know from the doctor if that was a possibility.  The lymph nodes are enlarged in the retroperitoneal (pelvic) area.  They said it's a small area for now.  He only mentioned chemo and maybe surgery, but he didn't mention radiation.  I hope he will let us know all the options.

Would you mind sharing where you had your lymph node recurrence?  You mention radiation so I assume it's also a small area.  

thank you so much for the support.  I appreciate it.  Good luck as well with your upcoming radiation treatment.  

Readersmaven

@Luci22 my enlarging lymph node is in the periportal region. This is just under the rib cage where the liver is located. 

Radiation oncologist said that he would radiate up to three lymph nodes but so far its only one. 

Good luck to your mom, think of this as a bump in the road...take care if whatever is going on and then "carry on ". It's all we can do. 

Please let us know how she gets on, we all learn from each other! 

Luci22

Hi there, we had a follow up with the oncologist but I'm still confused.  So far there is no treatment date set.  Apparently the lymph nodes are slightly enlarged and it's "likely" a recurrence. I didn't get a sense of urgency but when there's a probable recurrence, isn't it all about treating it "the sooner the better?"   We are on wait and see and another CT will be done.  I'm wondering why wait? I didn't get a chance to ask.  I know everyone is different but has anyone had a similar experience to wait and see and why? 

 @Readersmaven I asked if radiation was an option but he said no.  I'm not sure why the answers are different.  Can I ask where you receive your care or the rational for radiation?  Still confused overall. 

Thanks to anyone for your feedback.

Readersmaven

@Luci22 I'm in Kitchener and received my radiation in London. I wasn't aware initially that radiation was a possibility for ovarian cancer. 

I would ask more questions, if possible. My lymph nodes were enlarged and they said this likely was a recurrence, so very similar situation. The original plan was to do high dose radiation every other day for a total of 5 treatments to see if this would stop them from growing bigger.

Unfortunately, 2 additional spots were discovered, so I had 5 daily lower dose radiation treatments for pain management. Just finished on Tuesday. Will have another scan mid June. I decided on this course as the 2 spots haven't been growing aggressively. 

I understand that an initial reaction is to immediately want to treatment, but apparently taking a wait and see approach is very common. It's all what you are comfortable with. My oncologist said if I decided I wanted chemo just call and she would set it up. 

I don't think your wrong to ask again about radiation, for me it was very easy, no side effects at all and I'm hoping it will help delay return to chemo. 

Hope this helps...may be too much info, or more than you asked!

Luci22

Thanks @Readersmaven for your reply.  It is helpful to know and sounds very similar to my mom's case.  I wish he hadn't dismissed the idea so soon.  I wonder is it rude to ask him again or to ask for a second opinion at another cancer centre, such as in London.  I suppose it would also delay things going back and forth or I worry it would offend the oncologist.  Last thing you want to do is offend the one who is treating your family member.

Readersmaven

@Luci22 I don't think it's rude at all, you could frame it around seeking more treatment options. A good doctor/oncologist shouldn't have an issue with a patient asking questions.

My "journey" to this treatment wasn't fast, scan was in January, had another scan in March which uncovered 2 additional spots. So there was no urgency in treatment, mine is not aggressive, at this time. 

Luci22

Hi everyone, I have some updated questions that I thought I'd ask here. After further talk with the oncologist, there are a few options that have come up.  

First I'm wondering if anyone has had a secondary debulking? How was your experience?

I've also learned about the recent DESKTOP study published in 2020. It has found that it is worthwhile to have a secondary surgery followed by chemo and a parp, if the surgery is optimal. Has anyone had experience with this option? Has anyone chosen to skip surgery and do the chemo/PARP route and how did you find that?

Lots of questions I know. My mom has been given these options and she is asked to choose what she wants to do. On top of that she has a very large hernia so it would have to be added in at the end of the surgery to put a mesh in. We aren't sure what to do. Such a tough decision.

Any advice would be helpful.

Thank you!

Fearless

@Luci22 that's an awful lot for a patient and family to consider given it doesn't sound like you're very comfortable with the amount of information you have to inform those decisions.

I can tell you that we, as a group in OVdialogue, can't make any recommendations to you. We're patients only ourselves.  But for those who may have undertaken any of the treatments you mention we can share our own personal experience and perspective.  I have had neither any secondary debulking or secondary surgery. Many of our group though have experienced chemo followed by a PARP for maintenance and may want to comment.  But please bear in mind we, as individuals, are all different; our own personal makeup and the type and stage of our cancer. So what might work well for one, may not for another and vice versa.  

My own feeling is that you and your mom are struggling to make a decision based on limited information in hand...or at the least a better understanding of what has been shared with you.  If my read is correct, then this would be the time, for me, to go back to my cancer care team armed with more questions and not leave until I really understood the options available and the pros and cons of each. Failing which, time to ask for a second opinion.  

I am also c.c.ing our OCC Regional Director, Tracy Kolwich  @TracyOCC
 here in hopes she might have some advice to share, especially on the recent study you refer to.  Hopefully she will see this and reach out to you. Alternatively, reach out to her directly. You can do this in private message here or just email her with your predicament tkolwich@ovariancanada.org  

I'm always sorry when we're left to make choices with such significant impact to our futures and yet not always all the information available to feel comfortable or confident in the choice we make. I joke with my oncologist all the time saying to her....just tell me what you want me to do. Of course, she can't do that.  Just lay out my options and the choice is mine to make. That said, my oncologist is very good at ensuring I have all the information I need and the understanding of it to be able to move forward with confidence.

Keep us posted and good luck.  Don't rush on this and make sure you and she are comfortable with the final direction you choose.  She's lucky to have you there to back her up through all of this. 

Luci22

@Fearless - Vol Mod  Thank you for your response and insight and for tagging @TracyOCC.   There is a lot of information and I am glad that there are options even though she must ultimately decide.