I just wanted to give you an update and to share what’s happening with me. So I had one small bone met to my pelvis in 2018 kept under control with Ibrance and Letrozole. It even went to the stage of No evidence of disease just scarring. On my CT scan just before lockdown there were some changes in that area but it was decided it was bone healing. My CT last week showed 3 spots in my liver so we demanded a PET scan. We have been asking for this since last summer and said we would pay for it as a self funded referral. Each time we were told it was unnecessary as there was nothing on the CT and MRI scan. This time they agreed and needless to say I lit up like a Christmas tree. Shoulders, ribs, spine, thigh, hip and the 3 liver spots. I believe Ibrance stopped working last autumn so we are now looking at new treatments to take control of it again.
Please everyone get your PET scans done and push until they agree to do it. We have seen and are seeing Dr Callebout, Dr Stebbings and Patricia Peat all of them say they would go with PET scans rather than any of the others.
Please please get your PETS At least insist you have one a year. There was NOTHING on my CT scan in my bones a week and a half ago, No changes showing on my MRI.
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Scandia68
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Oh my goodness! Thank you for sharing your experience although it must have been a very nasty surprise for you. I’m just curious to know, did you have tumor marker tests to go with your CT and MRI since you were diagnosed in 2018? Hope your new medication will keep your mets under control. Sending you hugs and prayers!
They weren’t interested in monitoring tumour markers so I write them on the blood forms myself in pen each month 😁 so they get checked. I noticed they were going up by around 20 points a month but told not to worry about it.
Sorry to hear you have progression , and I can imagine a shock , when you have recently had a period of stability , but thank you for thinking of others too on here.
I note that you are in the U.K. and I don’t think we get PET scans as standard here . I only have CT scans and not MRI ( and I had a bone scan at diagnosis ) . May I ask what makes you think your Ibrance treatment may have stopped working last Autumn ,eg., tumour markers ? Or have you had any bone pain in the new areas ?
I hope that you are seen soon and that the next treatment gives you good results x 💟
There was a slight change to the single met that they put down to healing but my Timor markers were slowly creeping up end of last summer. Now in hindsight they believe that’s when Ibrance stopped working
Hi Anne,
It is worrying to hear that after a period of NED you have several new metastases. I think PET CT scans should be routinely offered. I have only had one, and that was over two years ago. My oncologist said that she would not order another one, and would only consider letting me have another one if my CT scans were inconclusive. I hope your next treatment proves effective for you.
That is word for word what mine said to us. The CT scan a week and a half ago came back only showing 3 spots on the liver. Nothing else new the area with the original met looked slightly different but not enough to worry about and the same as February CT. Mri of the same area was the same as before. Then PET shows the most increase just there on that side 🤷🏻♀️🤷🏻♀️. Much larger and in my hip and down my leg. If we hadn’t been so “forceful” we would not have had pet now either. Now of course they are scrambling scratching their heads. And after checking on the forums I use on Facebook it is sadly very very common. I have full faith in my integrative team and the repurposed drugs but I am furious with the NHS system. Oncologist said maybe PET is more harsh on your body and that’s why we don’t offer it 🙄🙄🙄 maybe??? Doesn’t she know?? Having CT and MRI replaced by PET every six months would be much better for us but clearly too expensive.
I strongly suspect PET CT scans are not routinely offered to us due to the cost. I didn't have any harsh side effects after the scan, so I have a hard time believing that's the reason they are not offered more often. CT scans and MRIs are probably cheaper. I had a much clearer picture of what was going on in my body after having a PET CT scan, so they are very useful. I will ask again, and maybe I should keep on asking! Like you, I trust my integrative doctor and the off-label drugs, as that side of things is working. I just want everything to come together, not having to always fight to get the best treatment. My oncologist does care, but I feel that she is tied to NICE regulations and trying to ensure she does not put a foot wrong. I get where she is coming from, but I am trying to save my life.
Exactly. Mine is nice but not very knowledgable about anything outside the curriculum. I told her I do concentrated oxygen sessions and she said they were not good and quoted a study done 35 years ago🤷🏻♀️ I don’t want nice I want proactive and skilled. Please keep insisting on PET it’s not dangerous or harsh just expensive.
Times have changed from 35 years ago! But cancer patients are continuing to die. I want more from life than just some palliative care. I feel the same way as you. I want to be treated by doctors who are up to date with the latest and best treatments and I want a piece of that pie. I am not satisfied with the idea of future generations benefiting from advances being made in cancer treatments while we are left to die. I find that completely unacceptable. I have never thought of PET CT scans as dangerous or harsh. I found the whole process fairly straightforward.
They are straight forward my other team laughed and said it’s a disgrace. When you go and they say no other changes than we expect. What does that mean?? Expect because it’s stage four and I’ll eventually die? Everyone who has beaten the odds and stayed alive have been proactive and done their own research so I intend to do the same. NHS only targets the stem cells but not the root of it.
I agree that the patients who are proactive are the ones who have beaten the odds. They were not happy to just accept that as their disease was metastatic it meant an automatic death sentence. When I first heard of Kris Karr and read about her poor prognosis, but how she turned her health around, one of the things that struck me about her was when she became the "CEO" of her health. That's how I feel. No one is as invested in my health as I am. At the end of the day, whether we live or die it makes no real difference to our oncologists. They are not our family or friends. They will just move on to the next patient. As cold as it is, I have come to terms with that fact. But it's our family and friends who are left behind who will be left devastated, so I am determined to do all I can to survive.
Thank you for sharing this important Info and I am sorry that you went through this burden to find out about your situations. I also have bone met to my neck since July 2018 and only have one pet scan since then. I asked my onc and he said sometimes it has false light ups! he goes only with MRI and SCAN. Actually my last scan was last December and he says with this Covid situation it is better not to do it! Now I am very confused.
I will ask him for one on my incoming visit. One question though did you have any pain ? Why you wanted to do pet scan?
So sorry you have had progression but well done demanding a pet scan. I have pet scan once a year I have mets to spine, ribs and sternum. How do you find out what your tumour markers are, I live in uk
I guess I never thought about the difference between the two so I am going to quiz my doc about it at my appointment on Monday. I remember my sister getting scans that showed lights all over her body when she was first diagnosed in 2011. I was thinking the other day that I had never had one of those. I've had CT with and without contrast, xrays, MRI's and utlrasounds but not PET.
The lights are the areas of cancer. They inject you with glucose (I think) then you wait an hour before they do the scan. The cancer cells grab on to the glucose or something like that 🙄 Try to get one
Any inflammation in the body will light up the scan. My first Pet lit up my spinal area and everyone decided it was bone metastasis I knew better since I had back problems. They even put it on my record against my request until it was proven. Well LOL, I had the bone scan and no metastasis. The PET is the the gold standard, but it can , and does give out false readings.
Pet scans are very sensitive and sometimes result in an over report. Nevertheless, I’ve had one about once every 18 months and when I sensed that ibrance wasn’t working anymore (there were blood markers done that my doc didn’t order) , she ordered a CT and the new spots showed up. I had a PET scan after 3 months on new meds (Afinitor and exemestane and xgeva) and she’ll ask for another at 3 months. It’s more critical the farther we get from diagnosis and into a new treatment.
Thank you Scandia68 and Sandra for your views on PET scans. I’ve only had the 1 PET which was at initial diagnosis. That’s been a year and a half ago. My dr doesn’t seem to think I need one. Like scandia68 I been thinking I needed another one just because you hear about PETs and “lighting up”. I guess I’ll just follow his advice for the moment until I get that “gut” feeling it’s time to push for something new.
Thanks again to both of you for this info and advice.
Hi Sandra thank you for your input I keep forgetting how widespread this group is and that procedures vary from country to country. Here in the UK the main reason they don’t use it is the cost and the attitude that if you have stage 4 cancer you’re doomed anyway so why bother.
I am now with the benefit of hindsight trying to analyse how or if I felt different and I can’t say that I did. I was keeping an eye on my tumour markers and although they are often unreliable (mine were normal even during active cancer) they were creeping up by 20 points a month like clockwork. We now think that’s when Ibrance started to fail. I felt very well and still do. I have normal aches and pains filmy age but I feel strong and healthy, last week I single handedly chopped down a tree 🌲. I have 4 dogs and we walk for miles, we sail and keep active.
The were 20 when first diagnosed which is normal range but when they started moving upwards it was very consistent each month and with all the mets I have they are still only 99
Yes 99 is still not very high , which is hopefully a good sign ... mine have never changed in over two and a half years , (18-22), but I do wonder if they might if I were to have any progression?
I have read somewhere on here that with PET scans they can’t measure as accurately, and the lights /brightness can make the tumour look larger than it is ? I hope this may be the case for you ? We are all learning from each other ! x
That's interesting. I've sort of thought that if I'm feeling well and the tumor markers are reducing, then that's a good sign. What I don't want is to spend most of my life going to hospital appointments or focussing on my condition. Maybe I just feel like I had a reprieve of 26 years after my first breast cancer. Well it probably wasn't 26 years but I didn't know about it til it was found by chance recently.
Hi there, did you have the contrast dye injection with your CT scan? I had my CT on Monday and got the news yesterday that all was stable. Now feeling a bit wobbly...
Congratulations on your stable scan. I have to drink a large cup of something at the hospital an hour before my scan and then they inject me with dye at a certain point during my scan. It makes me feel awful, especially the day after.
Also for all of you that had a PET scan at initial diagnosis ask them why they did that if it’s not necessary. Why did they do it then to get a full view and not bother when they know the cancer has spread. Here in the UK it’s as simple as NHS allows it initially an the hospital’s avoid spending he money going forward. Surely is even more important a year into treatment to check it’s all working
If PET scans are so much more accurate, why not stop the CT, Bone and Mri scans (thus saving money) and just go with a PET once a year? If the other scans aren't showing progression accurately what is the point. In Canada we haven't got PET scans. I think I will ask a German friend who has experience with Cancer what they consider the cutting edge in diagnostics is. Germany seems to be one step ahead in treatments.
Thank you for this information. I just asked my doctor last week about a PET scan and she said it was not necessary. I will keep pushing. Cheerio, Madlyn
Just a caveat to this : Please bear in mind that PET scans give a great deal more radiation. PET, and especially PET-CT scans, expose you to high levels of radiation. The effects of radiation add up over your lifetime. This can increase your risk of cancer. Multiple scans should not be done unless medical evidence shows that they would help. As in so much, nothing is clear cut and has to be balanced against risk and benefit.
Hi Olha! Yes, I do accept that the number/type of scans also have to be balanced against risk and benefit , and may not always be just down to cost . What country are you in ? I’m U.K. (NHS) x
My scans and appointments were also put on hold due to covid. I had a telephone conference with my onc in April but that does not replace an actual clinical appointment. I was diagnosed last year with inflammatory breast cancer st. 4 mets to hips and a few spots on spine. Since then, I was on Ibrance and Letrozole. Had a CT and mammogram done last December. Small lump in left breast 8 months after chemo. Onc said they would monitor it. Six months later it grew and new imaging done confirms it is a local progression. Organs clear, bone mets stable. However, Ibrance stopped working a while ago and I wish my onc would have kept my appointment in April. Perhaps the initial tumor and new treatment would have made a difference. Currently on my first round of Afinitor and Aromasin. Primary tumor in left breast is responding and getting smaller. Before the switch to Afinitor, my breast was so sore. A week after starting Afinitor no more breast soreness and I can definitely tell a difference in primary tumor! I am also on 6 grams of Turkey Tail mushroom capsules daily.
Getting to the point: my onc asked me if I had a pet scan done before. Of course I said no. She has not pushed for one. I have only had CT and bone scans. Perhaps today I will call and ask her if we should do one.
It is so important that doctors treat our condition rather than have the mindset that we are doomed. We are not doomed because we are st. 4. There are more treatment options out there all the time. Please don't let anyone poison your mind or sway you into thinking that everything is palliative. The goal is to heal and heal COMPLETELY.
Thank you for sharing your story and I hope and pray for all of us here that our continued care one day will result in the best news of complete remission.
Good for you ask about the PET. I don’t believe we are domed at all and I would encourage everyone to read Jane McLellands How to Starve Cancer, google her and take a look at her website, you can get the book there.
I've just read Dying to be me, Anita Moorjani, who came back from a near death experience and healed. It's very thought provoking and made me think that state of mind, being at peace and true to yourself might be some of the best medicines.
That is awful for you. I wonder about the ct scans I have every three months as they come back no change and then I have a bone scan and some lesions have grown and several new ones show up. As with everything money is more important than our health.
Ugggh. I am so so sorry about this. Again, I never have anything helpful to say...but with my words I want to say my heart hurts for all of us — and my mind is frustrated/angry/etc along with you concerning this particular situation. Ugggh.
I am so sorry you have had to fight for a simple scan, and then found such difficult results. You sound in control and keen to get going with the next stage of your journey.
Thank you so much for letting us know your experience.
I have only had ct scans and at my last appointment I was told that here in North Wales they are going to stop doing them altogether. The Oncologist will just go by how I feel and my tumour markers. Not sure how I feel about that, especially after your news.
I hope you get started on your next line of treatment very soon.
Hi that sounds crazy, you are not going to feel cancer cells until it’s too late and for a lot of us the tumour markers are not reliable. I’d find out if it’s just her method or all the hospitals in your region
I totally agree. I cant have the cats with contrast as I get an allergic reaction. So fortunately I always have PET scans. One PET scan revealed I was recovering from pneumonia when chest stay had missed it. Another showed I had inflammation in my oesophagus. I was suffering from excess acid at the time
The detail is far better than CT.
Right now on kadcyla the Mets have decreased by half the size in my lungs, liver and lining of the brain and some Mets have disappeared!
Had my monthly appointment at the Cancer Center yesterday and I asked about PET scans. My oncologist was in private practice in 2011 when he treated my sister and she had PET scans. He said that in my particular case, even with high tumor markers, since I have clear CT scans and good blood work, he can not justify the PET. He would have to argue the need in front of a Peer Review board in order to have insurance pay for it. In private practice he didn't have this need BUT he also didn't have access to advanced CT scans.
I am tolerating my Ibrance/Letrozole/Xgeva well headed into month 12, my blood and scans are good so I am not going to push it right now. This man kept my sister alive with stage 4 inflammatory BC for 6 years so I trust him completely. I know how fortunate I am to have this kind of long term relationship with my doc and I am thankful every day for this blessing.
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