At Moffitt I had a pre Tx PET and that was it. None Post Tx.

Yeah - they rarely do PET scans within 3 months of surgery but in this instance they did due to my wife was unable to do it pre tx as she was 31 weeks pregnant when she was diagnosed..

The reason why they conducted the PET so close to the surgery date was because they wanted to be absolutely sure that the cancer had not metastasised to other parts of the body (we had an Mx as part of the diagnosis due to this) as one of her lymph nodes did burst and was showing leakage..

Anyways, looks like the primary concern of the distant metastasis to the lungs & livers look like it is all clear, and hopefully we get the all clear with this 'activity' we see near the BOT where they operated on..

Feels like it is still a long way to go with 6.5 weeks of Radiotherapy & Chemotherapy, and this recent ordeal has not helped at all in settling the nerves and taking it easy until treatment date

Good luck! The waiting is the worst part - the radiation and chemo goes by faster than you think.

And thanks for all of the input about PET scans, I have been wondering for some time and when my doctor told me I didn't need one, I was aprehensive to insist, as I didn't want to come off seeming like I knew more than the doctor. I might request a PET at my one year post-treatment check-up, just for peace of mind.

Emily, we just went through this with my husband. He completed treatment on August 31st, recently had CT scan, got the results last week (all clear). There was some discussion about whether he would get a post tx PET. It is standard of care at University of Chicago. The tumor board weighed the fact that my husband had a heavy burden of tumor, lots of nodal involvement vs. his outstanding first CT results...decided he should be offered the PET. That said, we were told by the med onc that if we had pushed back, they would not have insisted, that it was a tough call. We have decided to opt for the PET, which will happen in mid-December. We are concerned about the extra radiation, but at this point, seems like a drop in the bucket vs peace of mind.

The doctors told us that it is very rare for a patient to be offered a PET scan within 3 months of surgery.

As per my posts, Jen was an exception and you can see why they are so reluctant to give them out so close to the treatment date - it is very difficult to interpret the PET scan results!

Ana & Emily - if it has been past 10 weeks since you finished your treatment, then a PET scan is definitely something that you should get.

All clear with the PET/CT scans - yes, they were false / negative.

Highly recommend AGAINST having a PET/CT scan within 3 months of Post-op as the accuracy of these reports are very low.

Now to get ready for the next round of Radiotherapy & Cisplatin...

Good luck Jay and Jen, I've been following your story. It's nearly 12 months since my brother finished treament and the time has just flown, but when you're in the middle of it all you can't see the finish line.
But you'll get there, so enjoy that beautiful baby, and take millions of photos and video clips of the new Bub, just in case you look back in 12 months time and it's all a blur because of Jen's dx and tx - a baby's first 12 months is just magic. Linda

Hi Linda,

Thanks for your kind words.

We had a great family day out at the Dandenong Ranges down here in Melbourne, and we are all trying to take it one step at a time.

My wife says she feels almost 'normal' 3 weeks out of surgery, and has healed up so well from both the pregnancy and operation.

I don't know how I will react once I see her start her treatment from next week and it is quite a confusing time for both of us where we are able to go on with our daily lives as usual, but still know there is a long way to go until we are all clear from the C word...

Baby is definitely a huge motivation and holding onto our faith really has helped us so far so we can only pray it will be the same this time around as well.

Tx started today with her first dose of chemo & radiotherapy.

Everyone was pleasantly surprised to see that Jen had packed on almost 3.5kg's since being discharged post-op, and that she had regained much of her speech & was able to eat certain solid foods considering she had a significant portion of her tongue (approx. 75%) removed only 6 weeks ago.

Both went well and she is showing no signs of the chemo side effects (nausea, fatigue, metallic taste etc.) as yet and same with radiotherapy.

We pray that this continues to be the case throughout her treatment and I am a strong believer that the worst is over and done with - the waiting game!

Will keep our status posted over the next few weeks until treatment ends and I hope this information will come in useful for others who are looking to embark on this journey..

Kind Regards
Jay & Jen

Wishing you all the very best for Jen's treatment and it was good to read her first one went well.
You will have done a lot of reading here and know it is not an easy journey but doable.
I will be following your updates and hope that they continue the way this first one started.
Love to you both,
Gabriele