HI there. This is my first post here so be gentle!
I'm a male aged 45 years, and was diagnosed with Stage IIA HL in late Sept 2018, presenting with enlarged supraclavicular nodes and many large mediastinal nodes. I was given ABVD for 2 cycles at which point showed PET negative so dropped to AVD for the remaining 4 cycles. The end of treatment CT scan showed two areas of fibrotic tissue/nodes of 3.5cm diameter and D-score of 3.
The multidisciplinary team have concluded that a 15 day course of localised radiotherapy to these two large nodes is recommended. Given the risks of late effects (particularly cardiac damage and secondary cancers) I'm keen to avoid radiotherapy unless it feels as if it will make a marked difference to my outcomes. One of the consultant oncologists I spoke with said my prognosis is good whether I have radio or not. The radiographer though has (rather strongly) advised that I have radiotherapy.
So, I'm currently weighing up all pros/cons, risks etc. before making that decision. And wondered if others in this group had found themselves considering deferring the radiotherapy?
I note from looking into D-scores that:
"complete response (CR): scores 1, 2 or 3 together with the absence of FDG-avid bone marrow lesion(s) are interpreted as complete metabolic response (CR), irrespective of a persistent mass on CT"
So It seems to me that the radiotherapy course is incorporated as a 'just for good measure' protocol here and one that doesn't offer any guarantees against relapse.
If anyone has any experience, thoughts etc that may be helpful here, I'd love to hear from you.
Hi and welcome to the site, an interesting questions that crops up every so often, I had NHL stage 4b and faced the same challenge but that was 9 years ago when CT scans were the norm, mine lit up after treatment and to play safe they wanted to continue treatment and move to radiotherapy to my abdomen, I was not keen due to side effects either. I had always been warned that due to the bulky disease that further treatment was likely, so when it arose it was not a surprise. I had prepared for it and had 2 long discussions challenging was radiotherapy really needed and could the scan be a false positive. The outcome of those discussions were a PET scan and a further pet scan after 3 months to see what the change was along with monthly check ups. I was happy to go with that and did see it as a gamble, but an informed one and one I was happy with for many reasons. So that 3rd option worked for me and its a decision we each have to make with confidence, being ready to face a different outcome if it was the wrong option.
The has been various studies looking at this very topic for HL patients and the appears to be no clear answer due to 2 reasons, the machines that are used these days are better at targeting areas and the old data is a) out of date and b) based on old technology.
So not an easy decision .
I’ve recently had my interim PET scan after 2 cycles of ABVD, and also scored 3 as there was still some active cancer showing in my mediastinial mass.
My consultant told me that if I was a man they would have dropped me to AVD and then given me some targeted radiotherapy to the chest area. However, as I’m a 43 year old woman, and the location of the mass would present a much higher risk of breast cancer. So instead I am continuing with the full ABVD for another 4 cycles. Whilst the B drug can create lung problems it was deemed a lower risk than the breast cancer from radiotherapy.
As John has said, these days they are very good at specific targeting and will only usually look to give the minimum to patients and avoid any unnecessary risks. I think the MDT meetings will take everything into consideration on an individual patient basis, as we’re all different and have different needs, considerations and risks. But best to discuss with your care team in full to come to a decision.
Hope it all goes well
It's a tricky one, as you don't want to be overtreated, however that is the main aim of the consultants dealing with hodgkins these days, and they really don't recommend radio unless absolutely necessary.
As someone who is currently going through the hell of a relapse, I would highly recommend taking their advice to avoid a situation like mine! The best time to cure is first time around and gets more tricky after that, so I would take what they are offering.
Ultimately, it's your choice though and only you can make the decision. You may weigh it up and decide not to, but think very carefully.
All the best,
Thanks for your input. Much appreciated. I have interacted with the radiographer again and have concluded that I will pass on radiotherapy at this point. It's been a harder decision that I'd imagined and I accept the risks of possible recurrence being increased (by some degree at least). If there is a return of the disease radiotherapy will certainly be part of the extended and more risky treatment on offer.
I recognise that part of me is attempting to remain as 'intact' as possible. To limit the collateral damage. But I am beginning to question that as a privileged ideal. I guess I don't want to find myself managing a recurrence and regretting my choice. But a decision had to be made and I feel that (just about) on balance it is the right one.
Thanks for sharing. And I wish you all the best with your treatment. Good luck! My radiographer did mention that it would be a more nuanced situation had I been a woman re: the risk of breast cancer. He felt that my biggest risk of second cancer was from a recurrence of HL. He suggested that the risk of a second cancer a result of radiotherapy was no more than 2-3%. If I felt confident in that statistic then I would have been more open to exploring that radio route. From the research it looks as though the risk of second cancer post-radiotherapy over 25 years was somewhere between 20-25%. So fairly high. That was however using higher dose and less targeted radiotherapy than is used these days. But as such, the 25 year evidence for the current radiotherapy protocol doesn't exist. it is assumed to be be accordingly lower but there is no clear evidence to show that this is the case. Being cited '2-3% risk' as such felt as if my radiographer was downplaying risks without having actual evidence as back up. When we talked about heart valve damage, he flippantly said "we can just replace them if that happens".
Having conversed with the haematology nurse and my consultant oncologist (both part of MDT) they stated clearly that my response to treatment had been very good. Each said in their own way that my risk of recurrence was low, and would be somewhat lower still if I had the radiotherapy. So I'm trying to take the positives from this to help direct my treatment choice to decline radiotherapy.
Hope all goes well with your treatment
I really appreciate you sharing, and I'm very sorry to hear you're going through a recurrence of disease. Hearing of where you are at has made me stop and really consider my decision not to have radiotherapy. It does feel somewhat churlish to refuse the treatment recommended by the experts and I appreciate there is some risk in not doing so. Two out of three of my MDT fully understand my position and are confident that my outcome is likely to be a positive one. But ultimately it is my decision and I have to stand by it whether I'm fortunate and hit the three year disease-free window, or also find myself with a recurrence. I feel I have to accept it and get on with life, rather than constantly question the decision.
Wishing you success with your treatment. Best wishes
Totally understand your decision. At the end of the day it's your body and if you can get away without having the radio, you will be all the better for it. Relapse is rare, so the stats are on your side! I was just very unlucky and I think I'm in that mindset of "gimme whatever you've got!". Deauville 3 is indeed still considered a CR and if for some reason it increased I am sure at that point they would just zap it with radio.
I'm just very very cautious now, but that's just given my circumstances. Whatever decision you make is the right one for you and I wish you all the best in your recovery!
Hi having stood in those shoes I fully understand your feelings and like you knew that radiotherapy would still be there to use as a tool should relapse ever occur, now you have made your decision then its important to start to move forward and recover from treatment.
Did you or the consultant discuss the possibility of a follow up scan at 3 months? or may be 6 months so that you get the reassurance that it would give.
These Deauville scores based on PET scan alone are now backed up by QPET scans that quantify the SUV update (measuring cancerous activity) - the 2 assessments together are more accurate.
Pediatric HL cure rates are slightly better than for adults, but not by much (approx. 10%).
There is a lot of concern about secondary cancer (Solid Tumours) following Radiotherapy, and specifically and naturally for younger patients, due to this 20-year delay in effect.
.In retrospectively studying pediatric HL patients since the 1980s, they know that 5.7% have a cancerous tumour after 20 years, 11% at 22 years, 25% after 30 years. After that, they do not really know yet I guess, but I think you might want to consider how old you will be in 30 years time? Forgive me if that sounds patronising or flippant. In that way, perhaps you can weigh up a worse-case scenario? Having said that - even then, the rate is 25%, so 75% won't get these issues it seems. One might well feel it is a calculated gamble well worth taking. Of course discuss this with professionals. Just throwing some thoughts into the equation, utilising evidence from pediatric HL trials.
Radiologists now counter this concern by stating that less radiotherapy and more targeted radiotherapy is given, and that this will result in less cancerous tumours in the future, but no one really knows.
i think you need to rely on your experts, plus remember that cancer treatments (for any possible future cancer risks) are improving vastly all the time. Not necessarily affordable unless a plea is made by both patients and experts (which is what happened in daughter’s case, it was her doing that helped get Brentuximab approved.)
yes, it’s always useful to research (and yes, I did for daughter which enabled me to talk sensibly with her Professor) but in the end, they are the experts in yheir field.
Yes without any shadow of doubt, you should always unequivocally discuss these issues with experts. The assessments cannot ever be made by lay people like us patients, because your circumstances are always going to be very individual.
It is an absolute minefield, the interpretation of Deauville scores as well as whether to go for radiation. Just sharing the latest research into the risks with radiation. I discussed this with my sons oncologist too.
Sorry if it seemed like I inferred that people could make their own minds up without listening very closely to the views of their support team, that should never be the case.
My son has been told his Negative interim-PET score was D2, on the Deauville scale.
Does this mean he has had Complete Metabolic Response at this stage?
Confused. I understand why specialists are reluctant to say that it is CR, but I thought 1-2 were definitely considered that, as well a increasing opinion that 3 also very likely means that too?
Hi Nick a score of 2 is good and to the best of my knowledge does mean he has had a complete metabolic response, though as always confirm this with his consultant, though which ever research paper you look at it bodes well for his future and the lower the score as always the better.
hope this helps you settle a little more and reinforces the confidence you have been developing over recent weeks.
how many more sessions has he got to go?
Thank you John, I thought it was considered as such, but certainly not counting our chickens yet. Only found out the D-score yesterday, I was expecting it to be a minimum of Deauville 3 as it was Stage 3, but yes its good news, though not taking anything for granted.
He still has 2 COPDAC sessions to go over next 2 months. Really pleased with the total lack of side-effects he has had, he even hasmanaged to sit his 2 GCSE's over past 2 weeks, we are really proud of him for that, despite the associated treatment tiredness.
Thank you again John, and for your genuine interest.
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