Hi all, just got my first 3 month MRI results and there is residual tumour. (Stage 3c1 - it went from 7cm to 8mm). I’m just curious if anyone here had that after their first MRI and if it kept shrinking, or if I need to prepare myself for more intense procedures.
Unfortunately, I got my results a week out from my Dr appointment to discuss them, so I’m freaking out a bit. I knew I shouldn’t have peeked, but they were right there 
.
Thank you.
Hi @Elroo the radiation does carry on working for a long time after and a lot of people don’t get the all clear at their first follow up, it can carry on shrinking for several months, and look how much it has shrunk already!
I did have residual and to be honest it was still shrinking at 6 months so I had surgery at the start of March which in all honesty was what I wanted!
I would call your cns nurse for reassurance, could it be scar tissue? X
Hi Elroo!
I’m sorry to hear you are playing the waiting game, that’s really an emotional roller coaster no one wants. I think I’m in the same situation because a month after brachy my dr did a pelvic exam and noted 3cm (down from 5) residual—although he did say he had no way of knowing if it was scar tissue or not—I think MRI is probably much better at that distinction. I think Gizzy is right, it’s such a good thing that your tumor has shrunk so much!!! That’s a good result at 3 months. Someone on here was saying that their dr said only 50% of patients had complete response at 3 months, and obviously a huge number would ultimately go on to have complete response later. Another point (and I think this is an important one that I haven’t seen discussed on here) is that low grade tumors divide slowly so they die slowly. The cells can’t die unless they are dividing & actively trying to grow. I know my tumor is grade 1 so that means it will probably be a little lazy to respond to treatment. On the other hand, tumors that grow super fast can respond beautifully to treatment with a complete response even before brachy but then return months later. They are all unique little snowflakes 
That said, I am definitely emotionally preparing myself for further treatment if I need it. A lot of people end up with something left when the dust settles. Hopefully you and I will be lucky though, let’s hope for the best!
Hi. I think that is a really good sign that your tumour has shrunk that much at 3 month. I was told that radiotherapy continues to work for quite a time after treatment. My nurse told me to imagine a wasp nest that had died but it takes time for it to break down.
My experience was that my 3 month scans showed my tumour had shrunk by half but still showed suspicious activity so referred me for biopsies. Long story short 5 weeks later I went for my biopsies and the tumour had gone completely and the biopsies they took were all clear from cancer and pre cancerous cells.
I hope you find that reassuring.
Just wanted to say thank you to ya’ll who replied. Keeping my sanity in check until I can at least talk to my doc. The worst part is, is that I promised my partner I wouldn’t peek, but I did, and now I feel extra bad because either I tell him and make him all stressed or I keep it to myself and freak out alone. Feeling so mad at myself for putting me in this situation and I can’t even blame anyone, lol.
Anyways, thank you for helping break me out of a bad tailspin. I deeply appreciate it.
Its not until Thursday, ugghhfft. It’s been a LONG ass wait!! And thanks for checking in, I’ll update once I know! Also, I’m a dumbass and told everyone in my circle and PROMISED that i wouldn’t peek at the results, so I’ve been sitting on this one on my own. I just can’t bring myself to make anyone else worry like this, you know?
Dont give yourself a hard time for checking them, as much as we have understanding family or friends no-one will really know the anxiety of waiting for results unless they are in your position. You’re not on your own at all, just a couple more days until the appointment where you can talk to everyone, and we will all be here for the venting in the meantime …and after! X
Good luck today x hope it goes well x
Thank you! It means a lot to hear. 
So, I met with my dr today, and she told me everything is on track and it’s most likely tumour just continuing to break down. The spot on the MRI is not lighting up with the same intensity as an actual tumour, so they will give it another three months to continue to shrink - as she expects it to, and we will go from there: she was very very positive and told me not to worry, this is a normal response and I can still expect to be NED by my next scan. I’m feeling…wiped out, exhausted because I didn’t sleep last night, and still scared, but mostly scared to hope, if that makes sense.
She also said that the current universal standard is to not even attempt surgery for at least six months after treatment until they know for sure radiation isn’t continuing to work, so give it time, and try to relax and not worry, everything is progressing as it should.
I was told there was a residual patch visible on mri but was also told they could never be sure unless they took biopsies.
Three months later there was nothing to be found anymore.
That is exactly what happened to me❤️ I am now 3,5 years on
That’s wonderful news, Elroo!
I found something from the Medical University of Vienna which is where the EMBRACE study (which is what the current golden standard ERBT & brachy treatment within 56 days is based on)— this excerpt speaks directly to this “remaining tumor: watch &wait” standard which apparently is a fairly new thing for Drs to do instead of rush to surgery 3 months after chemorads if there’s still tumor present in cervix. This stuff is so interesting! It seems like rushing to surgery may have previously contributed to higher/unnecessary mortality for patients who may have done really well if left to let the radiation keep working.
Seems like in the next few years we will see the CC statistics represent the result of these new standards and many many more women surviving and thriving after this treatment:
This study revealed another significant result for patients. In addition to the 98% complete remission rate and the high local tumour control rate of the uterus - 92% after 5 years - as major findings of the Embrace-I study, 81 (out of 1318) patients still had residual tumour 3 months after the therapy ended. In three quarters (60) of these 81 patients, the tumour disappeared after another 3 to 6 months without further therapy. Only in 21 patients did the tumour require further treatment after this period. “Previously, it was common to perform surgery after three months at the latest if tumour remained. Obviously, this is not necessary in a large proportion of patients. We can conclude from this study that a tumour that is still visible 3 months after the end of therapy can also only be observed by means of gynaecological examination and magnetic resonance imaging if it has already shrunk,” the study leaders concluded. The long-term outcome was also identical to the group that was previously tumour-free. The patients would thus be spared major surgery.
Thank you for this!!! My doctor actually called me back the next day, because she was worried that I was still overthinking everything, and wanted to reassure me with information from this study!! It’s so good to read. It’s incredible how much has been learnt in the past few years.
Very cool. I’m so glad you have such a progressive & compassionate doctor.
A lot of the old approaches/statistics came from the old standard of care, which was not image guided brachytherapy, but the “Manchester” model which meant every one getting the same exact dose of radiation to the same place regardless of tumor size or shape.
It was kind of a like a stab in the dark & sometimes it worked & sometimes not (but even when it worked a lot of poor women were left with serious side effects to healthy tissue). So it did probably make sense to run to salvage surgery if it didn’t get rid of all of the tumor because there was a high chance that meant it didn’t work. Now it seems like the chance is much greater that yes indeed it DOES work, so the best bet is trusting this process.
Just a PSA if anyone who is reading this is choosing docs/ gearing up for this treatment:
Image guided brachytherapy is only as good as the Radiation Oncologist performing the procedure, so it’s important to get some info on how experienced your Onco is in this—-especially as it’s a newer approach to an old treatment and requires a high level of skill. This is the most important part of the gold standard treatment so it’s not a bad idea to check out the skill level of your provider—always okay to ask questions and poke around online for recommendations.
And good health to us all 
Honestly, I’ve been completely impressed with the level of care that I’ve received - I’m in a tiny city in the middle-of-nowhere Canada, and my entire team here has been deeply compassionate, progressive, and proactive. I started this journey in the Emergency intake at my local hospital- the gynaecologist on duty immediately called oncology, and they took steps to ensure I stayed an in-patient in order to fast-track my biopsy and scans. I started treatment 4 weeks later. My brachy nurse, upon learning of my pelvic exam phobia and SA history, took me on a tour of the brachy equipment and room I’d be in, a few weeks before, so I would feel more comfortable and knowledgeable going into that treatment, and they gave me ativan to take in the morning before I left to come to the hospital, and before any exam that had the potential to trigger me. I got phone calls at least three times a week from my care team, checking in. The day I was diagnosed I was put into contact with a social worker for mental health counselling and how to apply for coverage, and she still calls me once a week to check in and see how I’m doing. After treatment, I was immediately referred to a pelvic floor therapist, bone density dr, and cancer-specific physiotherapist for strength training, and had the option to join a weekly recovery group.
I thank my lucky stars for my team and have been trying to figure out something I can do in return for them.
I love that.
Btw I made quiche for my radiation team & also brought them pastries from my little local (but super delicious) bakery. I know how you feel, its impossible to thank them enough really. How can you thank a team of people who are attempting to save your life and are so human and beautiful about it?
Elroo,
Absolutely get this. I’ve had ongoing issues for 10 years and depending on how I’m feeling at any one time, I’ve decided to share some or none of the information.
Since my cancer diagnosis I’ve had to let more people into my more detailed info circle, but it’s hard to know what to tell people in terms of what they might understand.
Obviously they don’t have the full info to hand so it’s feels like a balance of necessary Vs how much should I tell them to avoid lots of extra questions.
Thanks Lovewinz,
This is really good to know.
I’ve been preparing myself that it’s not like it’s just going to be zapped and gone after 35 weeks.
But this is reassuring as at the moment surgery is not an option.
Thank you all x
