Hi everyone, I've not been on here for a little while. I had my last chemo treatment on 26th July, final PET scan on 18th September and today went into see my consultant for the results. It's been a long month's wait for the results, delayed due to MDT meeting and consultant holiday. So I was a little taken aback at first when the consultant said my results haven't been discussed yet at the MDT. He phoned someone up and they confirmed I would be discussed at next week's MDT meeting.
He then went on to read the PET scan report, Deauville score 2, lymph nodes still measuring large, but he said that can often happen due to scar tissue, and a comment, "residual mediastinal nodes are less avid than the remainder of the mediastinum" - I asked what that meant but didn't really get a conclusive answer. He said the radiologist experts would need to provide comment at the MDT.
So I didn't get that "yay it's all gone, we'll just keep an eye on you" type of feeling. It all seemed a bit, "it kind of looks ok and we'll see how things go" All my friends are expecting me to come back with a big hoorah, yet I've come away a bit deflated. Yes it's good news, but it didn't feel 100% conclusive. He just said to keep an eye for symptoms coming back, that they wouldn't continue to send me for PET scans, but may do another CT scan, and I'll continue to see him every 3 months.
Symptom wise it's really difficult - my resting heart rate is still really high - this was one symptom that kept me going back to my GP when it suddenly rose from low 60's to low 80's. Currently I'm averaging around the high 80's for resting heart rate.
I still fell really tired all the time, no matter how much sleep I get.
I've started getting a little short of breath the last couple of weeks and a little bit of a cough - but I'm not sure if this is symptoms slowly starting or asthma due to the weather getting cooler.
I've not been a big worrier and have been really positive throughout this process, however, I thought I would come away with something a bit more definite from the final PET scan. I know there will be ongoing monitoring for a number of years but thought today would be more definite.
Has anyone else experienced this? Am I just expecting too much?
I totally understand! However a Deauville score of 2 is pretty good, to be honest, and most doctors would end up saying you’re in remission with that. But yes, if you had a ‘bulky’ type of HL then scar tissue does get left behind and that’s always a bit of concern. The fact they said they would CT you suggests they don’t consider that scar tissue to be ‘active’ which again is good news.
overall, I’d say no reason to suspect anything nasty still going on and I would expect your cough is most likely to be seasonal changes for your asthma plus possibly coming down with a cold? (I’m at the tail end of just that, as a fellow asthmatic, and mine began with the cough!)
the heart rate I can’t really say anything about except that, if your mediastinal mass was large and the scar tissue left behind is still bulky then maybe that might have something to do with it? Something to discuss with your GP, maybe?
definitely keep an eye on how you’re doing and if in any doubt whatever, any untoward symptoms, get in touch with your team! I hope they will get in touch with you anyway after they’ve had the MDT.
One of the main feelings after six months or so of active treatment is often the anticlimax and the wondering of ‘what now’? Often it’s helpful to have a read of Dr Peter Harvey’s paper, ‘now that treatment has finished, what then?’ It’s very reassuring!
Great reply from moomy.
At times some consultants can be so frustrating with some of the language that is used.
The Dr Peter Harvey paper is a good place to help identify the post treatment journey.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hello. Congrats on getting to the end of your treatment. I cant really comment on your final results but I was wondering why you relate your heart rate as a symptom of your lymphoma?
My heart rate has been high since I started measuring it during my chemotherapy. It's often like yours in the high 80s when I'm sat doing nothing. I have a heart rate monitor on my phone and have been measuring it a bit obsessively. A few times it's been at 100 which was scaring me a bit. I've just been putting it down to being really sedentary these past 5 months. I've hardly done any excercise, been eating terribly and put on weight as a result. Plus I tend to over think things and get anxious as well.
I also would have thought that the nurses who've been taking and monitoring my vitals at all my appointments would have mentioned it if they were concerned.
So yea, just wondering why you are relating it to the lymphoma really
I can comment on this as I had the same discussion with my Professor who was part of the group that devised the Deuville scoring system.
A Deuville score of 2 is considered a full metabolic response. They measure the uptake of glucose during the PET compared to areas of the body that will also uptake normally, like the mediastinum (or blood pool in the centre of the chest). If there is background uptake in original disease sites which is less than the mediastinum then this is a score of 2.
A Deuville score of 1 (the lowest score) demonstrates no uptake at all, however 1 and 2 are considered a full response as when they’ve looked at the data, there is no difference in cure outcomes between those who scored a 1 or 2. So they are same.
hope this makes sense and puts your mind at rest.
Thanks for all the replies. I think I was initially a bit set back due to the comment about not being discussed at the MDT meeting yet, when this had been the reason for pushing back my consultant appointment and having to wait over a month for the PET scan results.
It's now sinking in that the scan shows no sign of the active cancer which is what the treatment was trying to achieve, and that this is the first milestone of many over the coming months and years. I've spoken to some others in similar positions and I think that has really helped me. I now need to focus on my recovery from the chemo; improving my stamina, fitness and looking after myself.
I had stage 3 nodule this lymphocyte predominant hodgkins in 2015. Followed by metastatic thyroid cancer. I am in remission for both. What you’re experiencing is scanxiety. That will give you that feeling. You are right to focus on healing. Don’t allow the fear to affect your recovery. I know how you feel. I am sorry you’re going through it. It’s not easy. You get PTSD every 3 months then every 6 months for rechecks. Celebrate your health. I am always here if you want to vent.
Good morning Kairen Kaito
The word Scanxiety has been mentioned - so sorry if this ends up rather long ;)
Back in 1999 when I had my very first CT I never thought much about it, but the more I started to understood my condition (CTCL), then having 1-2 yearly CTs I started to develop negative mental and yes physical effects - so I did dread each time a letter with the date came through the door. It was like 2 months of life was lost every time.
But a good NHS Consultant friend advised me to develop a view point that celebrated all the positive results..... but to have some headspace for the bad results..... and these came along a number of times. He said “you need to understand that all the stress in the world makes no difference to what you get told post scans but does make a difference to our physical and mental wellbeing”
After 18 years living like a professional NHS patient - out of the blue I was discharged, no more clinics or CTs.......it was like my comfort blanket was taken away. My team said that they try to discharge folks as they have found the quality of life both mental and physical improves greatly.
I found this little article that you may find good to have a look at.
What Is Scanxiety and How Can You Manage It?
February 26, 2018 - Choose Hope
The first time you read or hear it, “scanxiety” may look and sound like a funny word. However, when you are going through it, there is nothing funny about this very real condition. From the first MRI following a doctor’s suspicious discovery during a routine exam to the annual PET scan years after an initial diagnosis, the fear and worry that accompanies imaging appointments can take a significant toll on your emotional and mental wellbeing.
Fortunately, you can take steps to minimise and cope with the sometimes-overwhelming emotions you feel.
Acknowledge your Feelings
Don’t try to ignore the way you feel, as this can actually increase your anxiety. Instead, recognise and even embrace your scanxiety. This first step empowers you to take action, move forward and manage your emotions, helping you find peace and feel more in control of your own life.
Talk about It to the Right People
Venting your fears and frustrations to people close to you can be a wonderful way to release stress and gain vital support. However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?), avoid sharing too much with them.
Practice Mindful Living
Ancient Chinese philosopher Lao Tzu said, “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” Look for ways to live in the moment. Hug your little boy and inhale deeply, noting the mingled fragrance of fresh earth and shampoo. Stroke your husband’s face and think about the way his soft stubble brushes your hand. Savour a particularly flavourful meal. Relish in the here and now.
Find ways to take your mind off the upcoming scan, at least for a while. Dig into a novel or binge watch a series that completely engrosses you. Turn up your favourite music and tackle a chore you’ve been putting off for too long. Hang out with that one friend who has a gift for making you guffaw. Schedule some time to enjoy your favourite hobby without interruption. If you have trouble letting go, imagine setting your worries in a “to do later” box and tell yourself you can pick them up when you’re done.
Sometimes, the unknown is the greatest instigator of anxiety. If you are unclear about anything –from what to expect during the scan, to when and how you can expect to receive your results, to what those results might mean– don’t be afraid to ask your doctor. Having a well-defined understanding of what you will or might experience allows you to be better prepared and can even ease your mind.
Plan for the Worst Outcome…
Along with knowing what could possibly come of your scan, creating a strategy for the worst case scenario can improve your sense of control. By no means should this be perceived as giving up or being resigning yourself to bad news. Cancer can make you feel powerless, but creating a basic action plan just in case can help you regain your power as well as your optimism.
…but Visualise the Best
Your mind is more powerful than you might realise. Visualisation and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the encouragement you need to overcome your scanxiety.
to make you feel better my husband had stage 4 hodgkins and most of it in the mediastinal area...his end of scan score was deuville score 5 ! He had a chest operation where they drilled through his sternum and removed a grape sized residual mass ...I was convinced it was still cancer due to the deuville score and the fact they operated ! it ended up being Non cancerous ...just inflammation! Hope that helps.
You mentioned something that I experienced. When you’re getting diagnosed and go through the chemo and labs, follow ups, scans etc and it ends..it’s like someone ripped the rug out from under your feet. All the chaos changes and the silence is deafening. That was something I thought would feel different.
A friend on this Community likened the cancer journey to be like a rock being lobbed into a lake and you have to ride out the many ripples - Family, work, treatments, finances, anger, worry etc... but eventually, once you get further away from the 'shock' point the ripples get very small...... but if we look hard enough we can make them bigger....... I like mental pictures as I find it much simpler to work things out with.
A few years back 2-3 years after my 2 Stem Cell Transplants I woke up in the middle of the night having this vivid dream.
It was all about living the post cancer journey to be like living in a parallel universe - I could see my old life but regardless what I did I could not get back on that same old path.
Following my many years of treatment and now a few years into my post treatment life, a situation I was unwillingly put into. It did actually make me review life and everything that we once thought important.
So some things from my old life are still in my life........ but various aspects of my old life that were once seen as important were put in the bin and I don’t miss them.
With regard to my resting heart rate, I’ve had a Fitbit with heart rate monitor for over 4 years and have lots of data and graphs of the trends of my resting heart rate. So I know from over the years when I’m fit and healthy my resting heart rate is low to mid 60s. When I’ve been really ill or had a bad asthma flare up it rises to the low to mid 70s.
Last June my resting heart rate averaged 63, but by the time I got to August/September it had shot up to the mid 80s. It had never been that high before and even in my sleep my heart rate was barely going below 80. (Previously are night it would lower to around 58).
During chemo it rose to high 90s (although interestingly on day 5 after treatment it would dip to mid 70s for a day or two before rising again)
I hoped that it would start to come down once treatment finished. I wasn’t expecting it to go right down to the 60s but I hoped I would see a downward trend to something a little lower. Currently my resting heart rate is around the high 80s and often when I’m relaxing with my feet up it’s around 100. It does come down eventually in my sleep to mid 70s but that’s the minimum it will get to, a majority of the night it’s in the 80s
I know to some it may seem a bit obsessive, however, I’m a scientist at heart, and when I have years of trending data to compare against, the current figures are definitely significantly out of my normal range, even in time of severe illness (cancer excluded).
I’m not so concerned right now to be chasing doctors about it, however, as I slowly try to regain my previous fitness levels I will continue to monitor it, along with my other symptoms and see how things go.
Thanks for the comments
Congratulations on reaching the end of your treatment and being in remission!
My resting heart rate used to be in the 60s and 70s. A year before I was diagnosed, I started having B symptoms and went to the doctors office several times and had a resting heart rate in the 120s to 130s, although my blood pressure was normal. Eventually I was diagnosed and my oncologist showed me my pet scan results and that the tumor in my chest was pushing against my superior vena cava (the vein that empties from your neck and upper body into your heart). The theory is that this caused my heart rate to increase.
I have been in remission for about 10 months now, and my heart rate has improved (70s to 90s) but has not gotten completely back to normal yet. I’ve been told that my tumor has been replaced with scar tissue, and also that since veins don’t operate under pressure, they don’t just reinflate back to their original shape once the tumor is gone. I may have a stent inserted in the future.
I don’t know if this is the root cause of your increased heart rate, but you could ask your oncologist or radiologist (if you’ve seen one) about it.
One side effect that I have noticed, is that if I lean over or bend down, I feel my neck thickening as if blood is pooling there, since it doesn’t drain effectively. This is associated with minor lightheadedness and dizziness. For example, I get this feeling when unloading the bottom rack of the dishwasher, or tying my shoe laces. Do you have similar symptoms?
One other possibility might be that your heart rate is tied to your hemoglobin or hematocrit. Those measurements are tied to your red blood cells and indicate how well your blood is able to hold oxygen. When those numbers are low, your heart may try to make up for it by beating faster. This is just a guess on my part and I’ve never confirmed this theory with a doctor, so it might be complete garbage. But it is something that you could ask your team about.
-- Jason - BadgersFan --
I can relate to this. My 15 year old son had an excellent interim-PET scan for Stage 3B HL, and they only gave him a CT scan at the end.
He was Deauville 2 at interim-PET which apparently means Complete Metabolic Response, i.e. no sign of FDG-Avid disease. I'm not sure why he didnt have a final PET scan just a CT scan. At interim-PET they consider Deauville 1-3 as PET-Negative, at final-PET Deauville 1-2 is considered PET-Negative.
At the final meeting, the specialist just said "basically its good news" though quantified it with "there's a bit of residue in his axial node and a bit in his spleen." He reluctantly (we felt) said "Complete Remission" when I asked him whether that meant 'a partial remission'. We certainly never felt any sense of achievement, it was a real anti-climax. I'd hate him to bring bad news (:-. But ultimately its their job to remain detached and unemotional.
As others have said, bulky disease can leave residue, in fact in about 70-80% of pediatric HL cases there is some residue left, which can be scar tissue, and it can also take several months to go down. I'd imagine its similar in adult HL.
The Deauville score partly relates to the size of any remaining tissue I think, so if you are Deauville 2 that is still a very good score. About 1 in 10 people with Deauville 1 or 2 relapse according to other studies (obviously I am not a specialist but I have looked at lots of them). If you have a large residual mass they may consider Radiation, but they are trying not to rely on this increasingly.
Overall, I would have thought your result is very good.
Whatever, it leaves you fraught with worry at all times. Any little cough or cold, any symptom etc. Rest when you need it, try and go to the gym but don't overdo it. My sons strength has comeback slowly but surely over the months.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: