Scared about RPLND

[SamanthaS]

Dear Forum members: My son was diagnozed with Stage IIB, non-seminoma, and went through BEPx3. First CT immediately after chemo shows one lymph node reduced from 2.5cm to 1.2cm, but a second CT is just out (7 weeks post-chemo), and it has remained at 1.2cm without any change. This apparently indicates the need for RPLND, and my son is very scared, as am I. I read that post-chemo RPLND is higher risk. His blood markers (AFP and HCG) are normal after chemo, except that LDH was normal but is slightly elevated on 10/25 blood tests. Any advice on how to mentally prepare for the surgery will be helpful, and any and all advice on everything at this stage too, of course.

[Mike]

One question I would ask the surgeon is that if the node is not removed and suddenly grows to say 3.5 cm on a check up then is RPLND an option or is he facing more full-dose chemotherapy? I would guess they may say more chemotherapy.

Mike

[SamanthaS]

Dear Mike: What is the reason for this question? Is it because at that point RPLND is not an option? That is a scary consequence to get more chemotherapy too.

[Mike]

Meaning that if he doesn't do surgery and the node grows at what point is RPLND going to still be an option or is more chemotherapy going to be needed.

Mike

[SamanthaS]

Basically he said that RPLND is not a choice but a must, given the indications. It was good to hear his unequivocal response, which forces me to accept the situation. He says that if the cancer comes back even after the RPLND, then he will do 4xTIP. Scary thought.

[Mike]

I am glad to hear that the appointment went well. I understand that it is a scary proposal but he is one of the top TC docs in the world and your son is in great hands with him and his advice.

Mike

[SamanthaS]

We have not seen him yet, but another highly regarded doctor now says, in my communication with him after reviewing my son's charts, that waiting 3-6 months might be possible, depending on whether the markers remain normal, to see if teratoma is there and will grow. This of course is a much more attractive option, but I am worried of the cancer (if there is any remaining) spreading in the meantime. I assume though, if the markers are normal, and if the node size does not change at all in the next 3-6 months, can we safely assume that it is fibrosis/necrosis, I wonder?

[Mike]

Possibly, if there is active cancer in the residual madd, could cells leave that node and travel elsewhere causing more issues? There is no perfect answer.

Mike

[dcnovachris]

Hi Samantha -

I'm sorry to hear about your son's diagnosis, but he's lucky to have a mother like you who is seeking advice and encouragement from these forums. I was diagnosed in 2015 and these forums were a source of comfort, information, and encouragement during that tough time. I hope they are a similar source of strength for you and your son throughout this endeavor.

As for the surgery, I can only speak from the perspective of having an RPLND performed as the primary treatment after orchiectomy (Stage IIA embryonal cell carcinoma). Regardless of when the surgery is performed, the surgery itself can seem frightening at first. However, as you stated, it helped me tremendously to have a doctor tell me that the RPLND was the best path forward given my specific case details. I highly recommend seeking out the services of doctors who perform the RPLND on a regular basis. Their skill and experience are hard to replace with any other assurances that could be provided. In my case, the doctors and surgeon at Indiana University patiently listened to and answered all of my questions without seeming rushed, bored, or otherwise inconvenienced. They walked me through the full procedure in advance and only ended the consultation when I had run out of questions. What put me at ease the weekend before my surgery was knowing that the RPLND was a step within my control (as opposed to being controlled by the cancer) and that it would be how I responded during recovery that would make the biggest impact. I trusted the doctors to do their part to the best of their ability and they trusted me to give recovery my full effort and attention. In May 2023, I will be eight years from my RPLND and have no regrets about doing everything in my power to reduce the possibility of a recurrence.

Looking back on it with hindsight, below are some things I think helped us get through the recovery process intact physically, mentally, and emotionally.

1. Accept the situation for what it is and know you have given yourself the great chance of a full recovery by following the doctor's advice.
2. Accept that the RPLND recovery process will not be fun. It will be painful at times, but you'll see progress almost daily. Don't lose sight of those daily wins.
3. Follow the recovery protocol. The doctors and nurses will set milestones for you to achieve while in the hospital, but it's up to you to find the motivation. You'll never be so excited to celebrate farting or pooping, and the nursing staff will be there to celebrate alongside you. Even now, eight years later, I vividly remember the nursing staff that took care of me and the joy they took in celebrating my milestones.
4. Find your "why." Set a goal for yourself and push it to the forefront of your mind during the tough times. My wife and I hadn't been married a year when I was diagnosed, and she was my "why." No way was I going to let cancer or the surgery prevent me from being able to take her to dinner for our first anniversary ~3 weeks after surgery.
5. Don't be afraid to ask for help. From your nursing staff, your doctors, your caregivers, or a higher power. The RPLND recovery process isn't easy and you don't have to go through it alone.

Chris

[SamanthaS]

Dear Chris:

Thank you for your compassionate response and your sharing of your own case. Your advice is really precious also. I am copying the list to share with my son. He remains rather overwhelmed and tries not to think about it, so I have to do the research, etc., to make sure that his best interest is served. I presume that your primary tumor was seminoma, hence your cancer markers did not go up during the time between your I/O and the RPLND? Whatever it was, I am so happy for you about the outcome of your surgery almost 8 years ago. Now I wonder whether we should try to go to IU for the surgery...

Do you remember how long it took you to feel normal again after the surgery?

Samantha

[SamanthaS]

Meaning that if he doesn't do surgery and the node grows at what point is RPLND going to still be an option or is more chemotherapy going to be needed.

Mike

Hi, Mike: We are told after a visit with another expert that RPLND has no role to play for viable cancer in the node. Is this your understanding? In other words, if there is still viable cancer, then chemotherapy is needed no matter when and whether RPLND will happen. Viable cancer is only indicated by blood markers. So we are advised the option of waiting three months since last CT till February 2023 for another CT, to see if the lymph node might shrink. It was my understanding that with non-seminoma, there won't be further shrinkage of the lymph node (currently at 1.2cm x 1.4cm), but he says that it could. Is that also your understanding? Currently, my son's tumor markers are normal (last test was 12/6).

[Mike]

We are told after a visit with another expert that RPLND has no role to play for viable cancer in the node. Is this your understanding? In other words, if there is still viable cancer, then chemotherapy is needed no matter when and whether RPLND will happen. Viable cancer is only indicated by blood markers.

Perhaps the statement was an oversimplification. There are definitely roles for RPLND with viable cancer in the nodes. However, raising tumor markers typically does tilt the options toward chemotherapy. RPLND is done in the primary, post-chemotherapy and salvage settings so application of a hard statement like "no role" outside of the context of the individual patient conversation is probably not 100% accurate.

Mike

[SamanthaS]

Perhaps the statement was an oversimplification. There are definitely roles for RPLND with viable cancer in the nodes. However, raising tumor markers typically does tilt the options toward chemotherapy. RPLND is done in the primary, post-chemotherapy and salvage settings so application of a hard statement like "no role" outside of the context of the individual patient conversation is probably not 100% accurate.

Mike

I think you are right, and I know you are right. Thank you for your clarification. This is very helpful. My son has opted to wait, to see if the node shrinks, grows, or stays the same in February. Is my understanding correct that with non-seminoma, it is actually unlikely for the lymph node to shrink so many months after chemo? Can it happen? Most cases I read in this forum are for seminoma, where the node continues to shrink even months after chemo. My son's did not change at all at one day after the end of chemo at 1.2x1.5 and 6 weeks after chemo at 1.2x1.4. Doesn't this mean that it is unlikely for it to shrink from this point on?

One more question about teratoma: The expert we saw said that if it is teratoma in there, it should grow a little bit, not much. And that he does not think the fact that there are two different kinds of teratomas matter. He says the difference between mature and immature teratoma only concerns pediatric patients, not adults.

[Mike]

Seminomas do tend to shrink after chemotherapy and for up to two years, I have seen. Unsure of nonseminoma but if the node did not change during the chemotherapy, then I would not anticipate a further change, but February will answer that question, I suppose. All the best with the February scans.

I am not aware of a steadfast rule for teratoma growth rates.

Mike

[SamanthaS]

Thanks, Mike. That node shrank by over 50% duing chemo, from 2.5 cm to 1.2 cm. It's just that post-chemo scans with 7 weeks apart did not show any shrinkage. The expert claims that if this were teratoma, by February it would grow only about 0.5cm. So let's see. I will keep you posted. Thank you.