Cancer disappearing between scans???

Hi

This happened to me, at my first scan post treatment although the MRI had shown a complete response my PET scan still 'lit up' at the site of the original tumor indicating cancer cells remained active in that area, my consultant said this could mean that the cancer cells were still 'dying off' or evidence of new growth in the same area. She arranged further PET scans to take place 4 weeks later (the waiting was grim) and at this stage although the area still lit up it was not as strong as before having her conclude from then that it was not evidence of new active growth and i remained on survellience, i just had more frequent scans for a period after that to confirm what she provisionally concluded - i hope you get a good result too. NB ive just coming up to two years post treatment and remain no evidence of disease 

Hi mochimoo,

Thats great to hear, I’m pleased for you and fingers crossed you keep getting NED. 

I only had an MRI at my first post treatment scan and that showed that some of the cancer remains. I’m having the pet scan on Saturday. I’m seeing my oncologist again in a couple of weeks so will find out then if I need the hysterectomy. 
It’s funny really because before my diagnosis I was asking for a hysterectomy because of other stuff that is going on, but they decided to just take my ovaries instead. Now there’s a chance I might get one anyway. I can’t help thinking if they had just done it in the first place I wouldn’t be where I am today, we’ll never know. 

Hi Funsize 

I expected to have a hysterectomy at my diagnosis, but at stage 2b it was not possible. I can’t recall if you’ve said your stage at diagnosis, but I was told the risk of spreading the cancer at my stage was too great to have a hysterectomy, and the treatment per international guidelines was chemoradiation with the intention to cure. 

I hope your petscan gives good results and that you don’t need surgery.

Sarah xx

Hi Sarah,

I was staged at 1b3-2a, they couldn't get clear margins when I was first diagnosed so I had chemoradiation.  Now the cancer has reduced considerably they may be able to get the clear margins.  I had a lung capacity test yesterday and I'm assuming that is in preparation for surgery should the Pet scan reveal that the cancer is indeed still there?

I also have a massive fibroid that is filling the whole of my uterus and causing all sorts of problems. It's has been causing problems for nearly 5 years now and I've had a nightmare trying to get someone to listen to me.  When I eventually did get somewhere they decided to just take my ovaries, stating that this would make the fibroid shrink, and it was during this op that they discovered the cancer.

My scans reveal that there has been no change in the fibroid so I'm kind of hoping that the cancer is still there and they decide on the hysterectomy.  I don't know how to feel right now because who in their right mind wants to still have cancer?  I want the cancer to be gone but I also want the fibroid gone as well.

Hi Funsize 

All the scans give different types of images, and the petscan shows detail at a cellular level. You need to have a radioactive tracer liquid put into your arm via a cannula and sit for about an hour as it works its way round your body. The scan itself doesn’t take too long, and it will highlight any areas where there has been a take up of the tracer. For me my cervix lit up, which can sometimes be inflammation, but I’d also had a biopsy under anaesthetic which had confirmed my cancer was back, so for me the petscan was looking for it lighting up anywhere else in case it had spread. I would not have been able to have my exenteration surgery if it had spread. Thankfully it was confined to the cervix.

I’m not surprised you want the fibroid out-that sounds awful to have to deal with for so long, I’m assuming the lung function test was part of a pre op assessment that’s always required before surgery? I didn’t have this particular test myself, but had lots of other checks at my pre op assessments like height, weight, heart trace etc. The doctors want to make sure you are fit for the surgery. 

Hysterectomies after radiation can be more challenging for the surgeon due to scar tissue and radiation damage-my hysterectomy had to be abandoned due the damage to my organs they found when they opened me up, but other ladies in the group have managed to have the surgery post radiation with better success.

If there is no trace of cancer, does that mean they wouldn’t do surgery just for the fibroid? I get what you mean-you’re not wishing for cancer but you’re hoping for surgery to solve your problem.

Sarah xx

Hi Sarah,

If the cancer has gone I don't think they will give me the hysterectomy as the fibroid isn't cancer related; and I'm guessing I will have to go back to my GP and be refereed again.  Which in the grand scheme of things isn't a bad thing as my cancer will be gone. Which is more important. 

I think I'm just being selfish because of the hassle I've had trying to be heard regarding the fibroid. I didn't realise it was as big as it is until I saw the scan results at my oncology appointment. The thought of having to argue with consultants again is daunting because after seeing the scan I think I've been fobbed off; but at least now I'm armed with the knowledge of what is actually going on inside me.  If my cancer is still present and they can give me the surgery, it kills two birds with one stone and saves me the stress of trying to get the fibroid sorted.

I can't believe I'm going on about the fibroid when anyone else would be over the moon with an all clear result. Sorry,  I so need to get a grip!

The fibroid is a long standing thing which is causing you issues, so no wonder you’re thinking about it! Lots of ladies are given hysterectomies which are for non cancer related conditions so I really hope this will be the case for you. I don’t think you need to feel selfish at all. 

On the one hand I hope it’s not cancer, but on the other hand I hope you can get the hysterectomy even if it isn’t. 

Sarah xx