3 Month PET Scan - Not Clear

Hi Ladies,

I am freaking out. I was diagnosed 3a with iliac lymph node involvement in January. Went through 5 rounds of chemo, 25 rad, and 5 brachy (US based). Both my radiologist and oncologist said that I had an “abnormally good” reaction to treatment and they gave me an 80% “cure rate”. My tumor was no longer visible on my MRI prior to starting brachy. At my physical exam on 31 May, my oncologist said that my cervix looked and felt normal and said everything looked “fantastic”.

Now…a month later, I just had my 3 month PET scan today and it says my lymph nodes have resolved but my cervix still shows “reduced” uptake (SUV 26.9 reduced to 9). I haven’t had a chance to talk to my doctors yet, but I am freaking out. Has anyone had anything similar? Did they scan me too early since I only stopped treatment 2.5 months ago and things are still inflamed? Or does this mean the cancer is still there and not all gone? Any insight is appreciated.

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Hi Kittycat, even 3 months sounds too early for a PET scan! The guidelines all now say to wait 6 months as the radiation keeps working for many people for that long. I had 1cm residual tumor at 3 months and my oncologist is still optimistic that it might be gone at 6 months. So now i have a difficult wait until my 6 month MRI, but im doing everything i can to help kick it (scientific research based diet changes, supplements, exercise, mindfulness etc). And i figure even if it isnt gone, i want to be as healthy as possible before the 6 month PET anyhow. I wouldnt worry at all just yet, 3 months definitely too early for a definitive call or for more treatment. Xx

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Hi Kittycat

I’m so sorry about your news. It reminds me of when I had my ultrasound and 2 biopsies that came back negative for cancer & I was sitting in my brand new Oncologists (who I had just been referred to. Just to finally rule everything out) office thinking what a waste of time this is when he came out with the absolutely terrifying news that I did indeed have cancer and he was worried that it could be quite advanced. F*@#k this cancer sh**t. I hate this for you. Just the stress of it, regardless of what the SUV may or may not mean. The truth is we have to stay vigilant especially for the first couple of years & try to be as healthy as possible. Keep your chin up, we are all rooting for you :heart:

Hello,
I’m in Australia and still going through my treatment at the moment but my oncologist/radiologist said they mostly do 6 months scans (unless you’ve had symptoms of a reoccurrence)
because there usually is still activity around 3 months and they have to do a 6 month scan anyway.
Try not to worry :two_hearts:
I’m sure your radiation is still working, hopefully they can get back to you and give you some peace of mind x

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Everyone is correct, of course, that you need not worry. My sympathy that I communicated was more for the stress of the process than anything else. Early PET scans after treatment are potential minefields for no good reason but since you did have one and the findings weren’t optimal, now you will likely have a biopsy & more worry and wait. Just frustrating that this is the process and the toll it takes on mental health. Sorry if my post was unduly negative, Kittycat.

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Thank you for your responses, ladies. I was able to chat with my radiologist yesterday who said that this is not “uncommon”. He said that maybe they scanned me too soon and things are still inflamed or I may have leftover radiation still showing on the scan. It could also be residual cancer or new cancer. He said that I need a physical exam with my oncologist to see what’s going on visually.

I told him I just saw her a month ago and upon examination she said that everything looked and felt “normal” and “fantastic” and that I was “visually NED”. He said that it was “unlikely” that things have changed since then - especially if I am not showing any signs of symptoms. He asked if I’m urinating ok and I am (although that has never been an issue for me throughout this journey).

My oncologist’s nurse emailed me back about my results and said that they are indicative of a “good response” to treatment - especially the resolved lymph nodes. Things at least are going in the right direction - meaning lymph nodes have resolved and uptake has decreased significantly and isn’t going in the other direction or showing signs of spreading. I am thankful for that.

I’ll keep you guys updated once I see her next week. I have anxiety and had a panic attack while on the PET scan table and had to abort and restart after some time, which I read can also affect the numbers. Here’s praying that it is just a combo of anxiety and leftover inflammation. My mom, who was a nurse, said that my poor cervix (I call her my donut) has been through so much and may still be healing.

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Ill keep everything crossed for you @kittycat . You’re not alone!! X

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Kitty, sending good vibes your way! So sorry your going through a stressful time, hopefully they can get to the bottom of this soon so u can have some answers.

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Hi Kitty,
I am in the exact same boat as you.
For me, i was 2b and my tumour started at 10cm! So I have only just found out on the 3rd of july that i either have traces left or inflammation and getting a biopsy on the 25th. I am gutted! Such a scary time!
I hope it goes ok for you. If you are wanting to chat for support whilst we go through it at the same time please feel free to send me a message! xx

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Oh wow. I’m sorry to hear you’re in the same crappy place. Gutted is a good word.

My tumor was 5 cm and was no longer visible on the MRI prior to starting brachytherapy. I am based in the US and I guess how they do treatment and follow up scans/doctor visits here are different than in other countries. Did you also have a PET scan at 3 months?

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Yeh it is a horrible place to be with this waiting game! I am in Scotland. I just got a CT and MRI. Was told we don’t get a PET as it’s extra radiation. I’ve had the most amount of radiation that anyone is allowed. My cancer is neuroendocrine cervical cancer aswell so it’s a rare one too. :frowning:
Fo you know what will happen with you if it does turn out to still be cancer?

What i can’t believe is that i had a 10cm tumour and it didn’t go into lymph nodes. To me i just cannot believe how that happened. Freaks me out

Yeah mine spread to my lymph nodes, but those show as resolved now, which is good. I’m not banking on thinking that it’s still cancer, although I know that’s definitely an option. I am currently choosing to say to myself, “Since the start of this journey, everything my doctors have told me is that the treatment is working and has a high success rate. I have to trust in my doctors.”

Everything was so positive up until this scan and there are so many possibilities of what would account for the cervical uptake. I see my doctor on Friday and I won’t be surprised if she takes a biopsy.

Depending on what she sees, we will chat next steps. I am just hoping that they scanned me too early or it’s inflammation. According to others next steps could include surgery or chemo. I have no idea, but will chat it all through with my doctor.

Also…I follow this gal on insta that had small cell neuroendocrine carcinoma (not sure if that’s the same one you have), and she is a few years out from her NED and thriving, which is awesome to see.

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That is a very good way of thinking! I have fingers crossed for us both.
Do you have her name so i could maybe follow her please if she has a public profile?
I am neuroendocrine but not large or small so basically just undefined neuroendocrine. Think the properties are still similar though.

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Of course. She owns a pilates studio in Los Angeles and her insta handle is @ amyjordanofficial . You can read her story here: https://www.today.com/health/womens-health/wundabar-amy-jordan-cervical-cancer-recovery-rcna67662

Lots of us in the same boat here with residual at 3 months, but that doesnt mean it wont be gone at 6! And even if it isnt gone, surgery or further chemo still options. I try and remind myself to work only with the facts or my mind spirals out of control with all the ‘what ifs’. I hope your biopsy on the 25th goes well. Also here to chat if you need xx

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UPDATE: Went and saw my oncologist today and she didn’t seem too worried at all when she walked in. She did say that my SUV numbers were higher than she’d like to see them, but then she reiterated how much they have reduced and how good that is and how good that my lymph nodes have resolved (SUV 26.9 on 25 Jan, SUV 12 at some point which I was not aware of previously, I assume from my MRI on 4 Apr, and now SUV 9.8 on 7 July). She said that all of my exams and scans since my MRI show no mass and I have been responding well to treatment and things have been progressing in a good direction.

She said she would do an exam so that she could look around and see if she sees anything nefarious. She said if she saw anything, she would want to do a biopsy where they put me under and take 4 deep punch samples.

She did the exam and said that everything still looks and feels normal and good. She did say that she could see some necrotic tumor still sloughing away, but nothing that concerned her. So that is amazing news.

So I am left with a decision to either go ahead and do the biopsy now so I have peace of mind, or wait 2 months and she will do another PET scan. If at my PET scan, my numbers don’t go down, she would want to do the biopsy then.

She said that the “light up” portions on my most recent PET scan could be from my immune system still attacking the tumor and that my body just takes longer to heal. I asked her what percentage she thinks it’s still active cancer and she said 25% with a 75% cure rate based on everything they know of the treatment working. So she’s sticking to those same numbers from the outset.

All in all, good news, since she didn’t see anything bad in there. Thank heavens!

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So happy to hear this @kittycat ! We always jump to the worst case scenario and so often then our minds are put at rest when we actually speak to our doctors. Will keep everything crossed for the next 2 months for you. My 6 month PET is on 18th September so we might be at very similar times if you decide to wait!

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Hi Kittycat

How is everything going now? Been thinking about you and hope all is well :heart:

Hi! I elected not to do the biopsy after talking to my mom (she’s a nurse) since my oncologist really only offered it since I was freaking out so much, so it seemed like an unnecessary step for me. I got the call yesterday that they authorized my PET scan so now I just have to schedule that up. I’ll let you guys know how it turns out. If the numbers go down, we’re good. If they go up, not good. No symptoms so far and feeling good so I’m hoping my body just needed some extra time to heal. That would definitely be on brand for me.

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