I have this worrying feeling that the scans themselves feed the cancer as they damage the DNA making it susceptible. And hearing that people have clear scans one month then the next they have tumours. Does anyone know about how radiation reacts with chemo or what the dangers are?
Men who have 3 xrays or scans increase their risk of getting testicular cancer by 60% - see below, so why don't we have figures for ovarian cancers? Or any of the women's cancers?
I think you are right to say that you have anxiety Candy. It affects us all in different ways. Regarding scans, generally they try to avoid giving them too often but it is the only reliable way to see what the cancer is up to. Medicine is often imprecise and less than perfect... if it were perfect we would have no side effects from chemo. Please talk to your oncologist or nurse for reassurance about the exposure from scans and try to trust that they are doing their best to get you a good outcome from treatment.
You have done well so far... I suggest that knuckling down to complete your current regime and then having a think about what next would be a good way to go.
Don’t make snap decisions driven by your anxious feelings.
I hope you have a relaxing Christmas and ok new year may be less than optimal but you will soon feel better and stronger xx
Re CT scans, yes, they give us an undesirable dose of radiation every time we have one, but the effects of that radiation, while cumulative, don't affect us for some years, so there is no connection between a CT scan one month and a raised CA125 the next month. I'd be far more concerned if I was 32 years old and having scans all the time, put it that way, but obviously, I do it feel it would be much better if some other type of scan not involving radiation could be used.
Now let's have a look at what you feel is inaccurate info from your doctors, see if we can clear that up to some extent. Get ready for a bit of a long winded explanation.... In respect of Clexane (which is actually a branded name for a low molecular weight form of Heparin known as Enoxaparin, an anti coagulant drug), your doctor was entirely accurate to say there is no oral form of it - any form of Heparin is inactived in the gut. What you're on now is probably something like Apixaban, one of the much newer class of anti coagulant drugs created in the last 15 years- these are not Heparin based. Prior to the creation of this class of drugs, the commonest (or even only) oral anti coagulant was Warfarin, with Heparin (either intravenous or sub cutaneous injection) only being used under temporary or particular circumstances, because it cannot be swallowed.
In respect of the number of chemotherapies,that's a bit of a knotty subject on which oncologists hold differing opinions, and something I researched myself and about which I had a long chat with the Professor of Oncology (at my treating hospital). The fact is, 6 infusions was the number decided upon when chemo was first invented and used, because they were winging it a bit, to see if it worked. Some oncologists now believe 4 or 5 would give the same results, but in order to find out for sure, it would require double blind clinical trials where some have 4, some have 5 and some have 6 - that is considered unethical, because what if 4 wasn't enough, then you've got people who might have had a better result and lived if they had 6? And anyway, people's cancers react differently, as do people to chemotherapy or any drugs. So running the trials is a risk no one is prepared to take... certainly I noticed that my CA125 went down with every infusion I had, including the 5th. I did not actually have the 6th one because I was told l could have Rucaparib instead after 4 sessions - I opted to take the 5th one anyway, and as it turned out, I couldn't have Rucaparib, so I'm glad I had the 5th chemo and I would have had the 6th if Rucaparib hadn't been offered. My feeling about the six sessions is, well, in for a penny,in for a pound, you've started so you might as well finish... unless there is extreme toxicity and it has to be stopped, or you find the treatments so awful you'd rather miss the last one. If I'm honest, I don't believe the 6th chemo would have made any difference to me because there was a resistant but 'stable' area of cancer which remained untouched by the chemotherapy - one more infusion wouldn't have changed that. Either way, remember, you have the choice to stop any time you like,, whether its after 4 or 5 - but from the research I did, I concluded that 4 were likely essential.
I don't know if any of that helps - hope it does when it comes to trusting your docs a bit more...
Hope you're having some lovely food today, since wishing anyone a merry christmas this year feels like a statement of extreme irony🤔😕🤭🎅 Let's look forward to the New Year, with vaccines galloping over the hill to release us from this cursed virus...bring on the Oxford vaccine asap...🎉
Dear Miriam, I want to thank you for taking so much time and answering so properly! The anxiety and ct scans harm is the subject of worrying of numerous of us. I have nothing to say about it, as I don't know for sure even doing my own research in the internet and using only articles by gov or ed or org. But thank you for your letter and Merry Christmas to you and your family!
Thanks for that - hope you had a good day with your own family. I did have my son and his girlfriend here, despite Tier 4 rules, because they are in my 'support bubble' and they'd been isolating for 14 days before today. A very nice day, and I did enjoy it very much, but very, very tiring-honestly, spending so much time alone and shielding for so long, I seem to have lost the habit of having company for longer than about 10 minutes without needing a respite🤭🤗Awful isn't it....
Miriam, thanks for the explanation about anticoagulants. I was on enoxaparin shots and recently switched to xarelto pills but never understood their relationship to warfarin and heparin. Wishing you a much better new year.
Oh sure - I only know about anti coagulants because I've been on them for years and years due to a genetic clotting problem. Despite having to inject, I prefer enoxaparin to all the other options, much more convenient if you urgently need a tooth extracted or a minor surgical procedure. Warfarin was the worst option...
Hi Miriam, Thanks for that explication of what I have perceived to be inconsistencies in my treatment. We're all lucky you're on this site and have done so much research. I've found that when I ask someone on my team, I'm essentially told - you don't need to know this. And if it's a man and sometimes even if it's a woman, there's an exasperated tone and an unspoken but clearly audible to those attuned to it, 'stupid woman'.
On the number of chemos, I don't understand why they don't use people who are unsure and want to stop at 4 in statistics to see whether it is as effective. I mean, what if they had originally started at 15? I presume some research was done in other European countries that led them to 4 as an optimum.
Partly because of the PICC line, I have ended up having 3 chest xrays, 4 CTs, 2 MRIs in quite quick succession so am very wary of having more.
But thanks for your insight as always. Here's to having survived Christmas, everyone.
Hope you had a reasonable Christmas... re number of chemo and research - the words of one of my oncologists come into play here - we're all different. He said he had people who had all the treatment and left with a very good prognosis who were gone in 10 months. And other people who maybe didn't complete the treatment and had a poor prognosis who were still around 10 years later - and they don't know why. Which suggests they can run as many trials as they like, but they may not clarify things. I'm, sending you a private message...
I know exactly what you mean in respect of not getting a response to questions - it does depend on the doctor or nurse you speak to though. I had to have an ECG last week, and it mentioned a couple of anomalies that might as well be in Swahili as far as I'm concerned. When I asked one of the oncologists what it meant, he said, don't worry about it.... I find that utterly infuriating, I want to say I'm not worrying about it, I just want to know, but he doesn't give you a chance to respond... Fingers crossed I get a different oncologist call me this week - there are 4 who might ring, two are good listeners and communicators, the other two, well,waste of time asking them anything, so I don't any more, I just let them speak and get off the phone really. But I never, ever feel they think 'stupid woman' because I know I'm not - its much more like 'you're an awkward or difficult (possibly demanding) patient and I haven't got the time or patience and you don't need to know that...' I had a Vitamin D level check 3 months back done by them - when the result came through, it said 'if patient is supplementing with D3, then a D3 assay should be carried out'. Well I do supplement with D3, but when I asked about it, it was dismissed and no explanation has been forthcoming. I know I've got an eye for detail and a general curiosity which is probably somewhat tedious to deal with for them, but really, why have I not had an explanation? I sometimes wonder if they don't actually know the answer, and of course, it's partially the usual problem - specialists concentrate only on their specialism, so if I'm not asking about cancer, well, they think it doesn't matter or its not important. Fact is, some of us are more worried by things we don't understand for which we can't get an explanation than we are by what might be the harsh reality of a clear, factual answer - that's certainly true of me. Probably means I'm a control freak or something, but it's maddening either way...no wonder my blood pressure's up🙄🤭🌝
Hi My oncologist does not like to keep scanning ever few months. I asked her for a scan as I was not NED after my first recurrence and still had some cancer left in my lymph nodes after 6 sessions of chemo. I finished last chemo in September. 7 weeks later went on Rubraca but have been off 11 days now as my platelets took a bashing. I asked her her how do we know if the Rubraca is stabilising the cancer in my lymphs as my was CA125 was only 3.4 on recurrence and said my bloods/CA125 tells them nothing. She said I will have a scan in February but believes that too many scans can cause cancer itself in her opinion so does not like to keep giving scans unnecessary but in my case my bloods don't tell them nothing so I do need a scan. When my platelets come back she is changing my parb to Niraparib starting on 200mg. I am brca negative. I did have a dose reduction from 1200mg to 1000mg but had stomach issues as well as platelets dropping. Oncologists may vary in their opinion/judgement re scans but mine defo thinks too many can cause problems.
Hi Candyapplegrey. I have also realized how serious s anxiety can be. I’m doing well on Olaparib but my CA 125 is not an indicator so scans are the only way to check besides symptoms. I think I imagined or exaggerated a pain in my pelvis before my last scan and when they told me the scan showed no cancer I was depressed because on some level I didn’t believe it. I got over it after a couple of weeks but it’s left me dreading the next scan. They are trying to limit the scans to every six months but as Miriam said I’m 71 and figure the OC will take its course before the radiation from the CT can cause another cancer to grow. That’s kind of grim but the fact is we’re surrounded by toxic treatments. I’m just thankful for every day I feel good. This was my third Christmas with cancer and despite being on chemo for the first two and Olaparib for the third they’ve all been good. I hope you can get some help with the anxiety and 2021 will be a better year. Xx
I totally agree with you that scans should be avoided where possible, but there are also times when everyone needs to know what's happening in there to be able to decide how to proceed. I have a scan booked for January to see whether my rising CA125 is a cause for concern - I have agreed to it but I would much rather not be having it.
I don't agree you should be considering the option of having no more chemo, but there are alternative ways to support your treatment and perhaps to minimise the amount of chemo you receive. I stopped both my first line and second lines before the end of the prescribed number (but to do that I had a scan first to be sure I was making the right decision). As my oncologist said, no one can say what is right for each person in terms of dosage and number of rounds. She also said that her job is to let me know what treatment is there for me and to recommend, but the decision is mine to make.
I would personally recommend one book to you which is Jane McLelland's How To Starve Cancer. I know many do not agree with her protocols, but the book does advise how to research your own cancer and how to discuss and possibly tweak your treatment, working alongside your oncologist, not instead of!
Its interesting re; number of chemo sessions. I got the usual 6 and didnt question it. However, my CA125 from the last 3 sessions (after debulking) were: 10, 9, then ending on 7. Now I do wonder whether that last one was necessary. But its done, I’m on Olaparib now 6 months, BRCA negative however tumour tested BRCA2.
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