› Forums › General Melanoma Community › Radical lymph node dissection – proceed or not?
- This topic has 13 replies, 5 voices, and was last updated 5 years, 11 months ago by
scnnr.
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- May 28, 2019 at 7:10 pm
Hi Everybody,My partner was diagnosed with melanoma in 2017. Tumour in his left foot, 2.2mm, Clark IV. It was surgically removed with good margin in October 2017. At the same time some lymph nodes were removed from inguinal and popliteal areas as part of the SLNB.
About a couple of months ago this year he discovered an enlarged lymph node in his left groin area. PET/CT scan showed:
Hypermetabolic lymphadenopaty is identified within the left external iliac region. The largest lymph node measures 5.2×3.9cv. This node is markedly hypermetabolic.
Hypermetabolic lymphadenopaty is identified within the left inguinal region. The largest lymph node measures 2.8×2.4cm. This lymph node is markedly hypermetabolic.It looks like it hasn’t spread anywhere else (brain MRI also came back clean). We had to deal with ruling out a suspicious spot in his right foot, which turned out to not be a tumour, which delayed everything by a month. Our oncologist’s opinion is to proceed with a radical lymphadenectomy in the left groin area, and then likely Keytruda.
We’ve been reading various research and studies trying to understand the implications of the surgery better, and we are worried about lymphedema and the high morbidity rate (literature suggests 50%, the surgeon told us 30%, which is still high). So we are now facing a question – do we want to proceed with the surgery, with the risk of possible complications taking away whatever precious time we have left? Or should we not do it, and just start on immunotherapy and possibly something else?
Some other considerations:
– There are several studies that show CLND not having significant benefit for OS. Our situation is different, since he’s well past the point of CLND, but it’s still something to consider.
– If there are complications from the surgery, this will delay any other treatment.
– If we go ahead, and the surgery is successful, it’s still not a guarantee it won’t come back.So this is where we’re at. We are not sure whether to proceed with the surgery. My partner values quality of life over length, and my role is to support him in whatever decision he chooses to make, and to ensure that we have as much information as we possibly can. The surgery is tentatively scheduled for next week. We are hoping to get a 2nd opinion and another PET/CT scan before that (in case it spread elsewhere). Now my questions:
– Has anybody here rejected a radical lymphadenectomy? What was your experience like?
– If we decide not to go with the surgery, is there something else we could try on those lymph nodes? Radiation? T-VEC? I’ve been trying to find any info on specifically T-VEC as an alternative to surgery, but typically they talk about using it when it’s inoperable – but it seems the criteria for considering something inoperable could also be when the surgery would create significant risk and potentially delay adjuvant therapy. Have there been cases of T-VEC being offered as an alternative to lymphadenectomy?
– Are there any other treatments or trials that could also be considered as an alternative to lymphadenectomy?
And just any thoughts or considerations on this would be greatly appreciated. Thanks!
Ryan
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- May 28, 2019 at 9:59 pm
In August 2014 my SLNB found melanoma in a lymph node. 14 more lymph nodes were removed; none showed melanoma. Removing those lymph nodes did not help. Melanoma spread to many of my bones.Could only the 2 lymph nodes that show active in the PET scan be removed? Radiation is another option.
In April 2018 my oncologist sent me to a surgeon to discuss surgery to remove a cancerous lymph node under my left jaw. The surgeon did not want to do surgery and sent me to a radiation oncologist. I had radiation to that lymph node in April 2018 while continuing to receive immunotherapy. It seems to be stable.
If you choose radiation, I suggest beginning immunotherapy before receiving radiation. I received radiation to a rib in September 2015 and began Keytruda immunotherapy in November 2015. Neither helped me. If they had been given at the same time, they might have worked better. After Keytruda immunotherapy failed, I was given Yervoy+ Opdivo immunotherapy. My bone cancer seems to be gone.
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- May 28, 2019 at 10:17 pm
Thank you for sharing your experience! Was T-VEC offered to you as an option for the lymph node? When we asked our oncologist about it, she didn’t seem to be very familiar with it, which I found surprising. She did say the field is changing fast, but T-VEC was approved by FDA back in 2015, so I would assume it should be a better known option now, especially for when surgery might not be the best course of action, but perhaps I’m missing something. Another couple of reasons T-VEC seems an attractive option – it creates a long lasting response, and due to a different mechanism of action it seems to compliment immunotherapy. -
- May 28, 2019 at 11:34 pm
Hi Ryan,My husband had a somewhat similar situation:
First melanoma Fall 2007 on his upper back, WLE no other treatment (honestly, I didn’t go to the appointments and was very unaware of the details re melanoma). Mole appeared on his arm in Nov 2017 and hubby refused to deal with it until June 2018 because it started bleeding. Was 3.5mm transected, ulcerated, showed signs of regression. During SLNB they removed 10 lymph nodes and all were positive for melanoma. PET scan was clear except for area in arm where he was also recovering from surgery, so they could not rule out inflammation as being the cause of the lit up area. So, at that point he was IIIC and BRAF negative.We were reading the same studies re CLND not contributing to the OS. Treatment recommendation was CLND, radiation therapy, and Opdivo every 2 weeks for a year. He chose not to do the CLND nor the radiation therapy, but agreed to the Opdivo. (he is very resistant to traditional medical approach to cancer treatment, also he uses his arms in his profession and didn’t want to risk lymphadema).
After 4 months on Opdivo (with mild side effects), the cancer spread into lymph nodes in his chest area (pectoralis area) and are large. He is now Stage IV. They switched him to Opdivo/Yervoy combo and he is tolerating it quite well. Two treatments in, third this week. Onc. wants a PET scan after third treatment to check on progress. We’ve had a surgical consult and depending on the results, surgery may be recommended for curative purposes or palliative/preventative purposes. He is still hesitant to have additional surgery, but because the tumor is now fungating (I’ll let you look that up, it’s gross), I think he has no choice imho.
So, do we regret not having the CLND? No, but it may have helped slow this down, no doubt about it. We were hoping the Opdivo would knock it out. Now, we are hoping the combo will reduce the tumor load and will show no further spread. Btw, he has not had lymphadema from the removal of the 10 lymph nodes, so if they do a CLND now, we are hoping that bodes well for his response, but there are no guarantees.
I am sorry you and your partner are going through this. It is really hard making these decisions when you want to balance quality of life vs impact of treatment vs. extending life by getting to NED.. Also, I understand what it is like to want to support your partner’s wishes. I must say that now that my husband is Stage IV, I am going to be much more forceful in my opinions about what he should do. The stakes are much higher and this disease has proven itself to be an aggressive opponent, so I feel as though we need to respond in kind.
Best of luck to you both!
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- May 29, 2019 at 12:43 am
More info belowhttps://www.google.com/search?rlz=1C1CHWL_enUS772US772&ei=ydTtXMPLAYSctAWz35z4Ag&q=lymph+node+dissection+melanoma&oq=Radical+lymph+node+dissection+-&gs_l=psy-ab.1.4.0i71l8.0.0..10797…0.0..0.0.0…….0……gws-wiz.Ys92dmgFTxo
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- May 29, 2019 at 1:40 am
I hear you on being more forceful in your opinions – when I say I want to support my partner’s decision it doesn’t mean agreeing with everything, if I felt that he wasn’t giving proper consideration to something or if he was intentionally ignoring something I would try my best to make sure he is making an informed decision.Best of luck to you both as well, and I hope if you end up doing surgery it goes well and healing is fast and with as little complications as possible!
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- May 29, 2019 at 12:45 am
1. Make sure you are seeing a melanoma specialist. Appropriate melanoma therapy has changed rapidly since 2011 and not all general oncologists have kept up.
2. I have had 2 CLND’s. One to each axilla. HOWEVER, they were done in 2003 and 2007…long before any current effective melanoma treatments were available. I did not develop lymphedema. I am lucky.
3. Lymphedema occurs more frequently in those who are older, weigh more, and in the lower extremities. I was 39 and 43. I was thin. My upper extremities were involved.
4. It has been more than proven that a CLND does NOT impact overall survival. Here are several posts and articles that cover all sorts of points on the topic: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=CLND In fact, despite having had only a thin superficial lesion and one positive node…followed by CLND in 2003, I developed a second primary with no positive nodes, though a CLND was still done, in 2007 and STILL progressed to Stage IV melanoma with brain and lung mets in 2010.
5. Further, there is data that shows that actually leaving the tumor in place….if the tumor burden is low….I KNOW! SOUNDS CRAZY, RIGHT????…giving treatment – termed neoadjuvant therapy (either targeted or immunotherapy)…and THEN removing the tumor if it does not resolve….has better results!!!! Here are many reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=neoadjuvant
6. Just to be clear….you can start treatment. If there is no response or one stubborn tumor that remains post treatment – you can always remove it then.
7. If your partner is Stage IV, why is the oncologist offering Keytruda? That is fine. I am still here because I was given the other anti-PD-1 product, Opdivo, as a single agent in a Phase 1 trial from 2010 to 2013. However, Keytruda/pembrolizumab or Opdivo/nivolumab have only a 40% response rate while the ipi/nivo combo has a 50% plus response rate. It does have a higher incidence of side effects due to the ipi component…but most folks can drop the ipi and proceed on nivo alone if need be. Here is a primer on melanoma care generally that may be helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
8. Melanoma treatment choices are very personal. However, it does pay to get it right!!! Be sure to see a real melanoma specialist at an institution that treats lots of folks with melanoma before you proceed.
9. Hang in there. There is hope. Your partner is lucky to have you. Support from those we love is super important to melanoma peeps. Ask more questions should you have the need. I wish you both my best. Celeste-
- May 29, 2019 at 2:13 am
thank you Celeste – I was hoping you would chime in, we’ve been reading your blog quite a bit, of course!>> 3. Lymphedema occurs more frequently in those who are older, weigh more, and in the lower extremities.
It’s yes, yes and yes for our case – which means lymphedema is pretty much a given, but just how manageable it will be is hard to predict, which contributes to making this a difficult choice..
>> 4. It has been more than proven that a CLND does NOT impact overall survival.
Yeah, we’ve been reading the studies and the info on this, including your blog. Not sure how much it applies to our case though, since CLND would normally be done right after SLN, when the nodes that are being removed are still small, so CLND is more about preventing spreading while in our case it might be needed simply because if these tumours are not treated they’ll become a problem on their own. I can’t seem to find much info talking about this scenario.. which brings us to..
>> 5. Further, there is data that shows that actually leaving the tumor in place….if the tumor burden is low
Now, this is really interesting, and somehow I completely missed neoadjuvant term before! Definitely something to look into and consider. What I also like about this is that it would give us more time to consider our options while improving our knowledge, since we’d know which immuno worked and which didn’t. And possibly make surgery easier by reducing the tumour burden?
>> 7. If your partner is Stage IV, why is the oncologist offering Keytruda?
I think he is Stage III (our oncologist said she is still considering it regional – left foot / groin area). We haven’t really discussed the choice between Keytruda/ipi/nivo yet, sounds like she had success with Keytruda before. We don’t even know his BRAF status yet (they didn’t have enough material, they were hoping to get more from the right foot but it turned out to not be a tumour).
I’ve read your posts on T-VEC as well, what is your opinion on why it’s not being offered as a possible alternative for surgery? Everything I read about it sounds really good, and there are indications it works better for Stage III than IV, which would also make it more suitable for us – but I also don’t want to start searching for that “miracle cure”, and I realize that there are still only few studies with pretty small groups. Still, everything I read sounds great, so I’m surprised it’s not more well known.
>> 9. Hang in there. There is hope. Your partner is lucky to have you.
I think we, partners, are also lucky in a way that not everybody gets – perhaps there is no better gift than being able to help the people you love..
Thank you for kind words and support!
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- May 29, 2019 at 1:44 pm
Yes, shrinking tumors via any treatment aids in helping the patient period and makes surgery easier if required later due to decreased tumor size. So….that is an argument for treatment prior to surgery as well. As far as my incorrect assumption regarding Stage IV – at Stage III I think only single agent immunotherapy is FDA approved, so the ipi/nivo combo is available only in clinical trials. As far as intralesional therapy – there are some on this board who have utilized it to good effect. I don’t know why it is not being offered to you. If I had an accessible lesion (one that could be injected cutaneously) I would certainly avail myself of it. Again, another reason to make sure you are being seen by a melanoma specialist. T-vec, CAVATAK, and PV-10 have proven to help patients. I am not positive where CAVATAK and PV-10 stand in their FDA approval. Here are 2 articles that may interest you:
https://www.skincancer.org/publications/the-melanoma-letter/summer-2016-vol-34-no-2/intralesional-therapies
https://www.cancernetwork.com/oncology-journal/role-intralesional-therapies-melanoma/page/0/1
You can note that neoadjuvant treatment is mentioned. You can always inject a tumor and take it out if is doesn’t resolve. There have been several studies (as well as patients on this forum) in which intralesionals have been combined with anti-PD-1 systemically. Hope this helps. celeste -
- May 30, 2019 at 2:20 am
Thank you Celeste!“As far as intralesional therapy – there are some on this board who have utilized it to good effect. I don’t know why it is not being offered to you. If I had an accessible lesion (one that could be injected cutaneously) I would certainly avail myself of it. ”
This is something that hasn’t crossed my mind – is T-VEC and such only considered for intralesional therapy? So, not applicable to inguinal / iliac lymph nodes?
Thanks for the links – will give them a read now!Re: Stage – he was stage II when diagnosed, 2 sentinel nodes biopsies came back negative. With the latest round biopsy from a groin area lymph node came back positive, which correlates with PET/CT scan. The oncologist said she still considers it regional, so not sure whether it’s III or still II.
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- May 30, 2019 at 3:04 pm
T-VEC, CAVATAK and PV-10 are intralesional treatments. All intralesional treatments are exactly that….drugs that are injected directly into the tumor. Therefore the tumor must be accessible for injections. Nodes that are palable are usually injectable.
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