End of treatment.

Hi Sue m ,

Firstly welcome to our little corner of the MacMillan Online Community although I’m sorry to hear of your diagnosis & subsequent treatment. Congratulations on completing your treatment & I hope you’re doing ok. 

Like you at diagnosis my tumour wasn’t visible on either of my diagnostic scans & I too was diagnosed purely by biopsy. 

It’s definitely normal that your oncologist didn’t offer you answers as to if your treatment has been successful at that first appointment.

It seems that often you’re not scanned again until around 3 months post treatment. I hope someone will correct me if I’m wrong as I had my treatment 7 years ago now & I know things change over time. If it’s still the same though I think this is for 2 main reasons, firstly the radiotherapy continues working for quite some time following that last session so even though you’ve finished your treatment it’ll still be very active & still doing it’s thing, it’s not unusual for people to still have residual tumour when they finish treatment but then to have had a complete response by the time those first set of scans are done. Secondly the radiotherapy causes a whole load of inflammation which I’m sure you’re aware of & I think this can affect the results of scans done any sooner. 

Your team will be fully aware of the site of your tumour & will now know exactly where to concentrate on looking on future scans even though it was undetectable on pre-treatment one’s. Also you’ve the added reassurance of being looked after & checked regularly for the next 5years. 

It’s a rollercoaster of emotions & anxiety the whole way through from diagnosis to recovery isn’t it? You’re definitely amongst people who totally understand here. 

Sending you lots of healing thoughts for a smooth recovery. 

Nicola 

Thank you so much for your response. Although not ideal reassuring that I am not alone with pre diagnosis scans not identifying anything. I was starting to feel as if I was being looked at by professionals as some batty women obsessed with her anus , it took 12 months to diagnose. Thinking that may be a title for a book of my journey ! 

Hello Sue m

Another welcome from me, although I am sorry that you had to go through all this.  You must be so relieved that treatment is over and I hope you are taking it very easy and giving yourself time to recover.  It is a very intense course of treatment and the body takes a huge amount of energy going through the healing process.

Nicola is absolutely right, it is unlikely that you will get a straight answer at your three month scan, or perhaps even your six month scan.  Scan time (scanxiety) is the worst, even years down the line and we can all empathise with the feelings you are going through.  But the treatment has a proven track record and one of the quirks is that radiotherapy carries on working for months after the last session.

We all come on and share our anxiety on here so please do if you feel the need - I don't think anyone walks away unchanged after a cancer diagnosis and sometimes we need to offload amongst those who really do understand.

Healing hug

Irene xx

Hi Sue,

Welcome to the forum. It really is a great place for help and advice from lovely people who have lived experience of this diagnosis.

It sounds like you had an awful journey getting to the point of treatment and I absolutely know what you mean about being viewed as a batty woman with an anal obsession! For me it was 8 months and I know that some others on this site have had similar experiences.

Well done on completing your treatment and as the others have said there is more waiting now until the 3 month scan or sometimes the 6 month scan to see if the treatment has worked. It’s a very anxious time and I’m sure your oncologist will be vigilant with the scans given your history.

 I had my 3 month scan results and the treatment has been successful so very much hoping for good outcomes for you too. 

I hope you are able to rest up and recover.

Best wishes to you xx

Thank you, wish I had discovered this group months ago, already feeling I am not alone with the anxiety and not knowing. It did feel like I was in the minority x

Like you mine took ages to diagnose (11 months) and had spread to lymph node and blood vessels before it was identified. It is all the waiting ( which I know must be done) that is emotionally draining. It was a further 12 weeks before I started treatment as Christmas was an “inconvenience” ! And then they kept pushing back start date until I involved PALS at the hospital. Everything felt like a battle. Nobody had spoken to me about the long wait after treatment for an outcome , think that would prepare people , much like they prepare you for side effects of treatment. All I can hold on to at the moment is lymph node appears to have gone down even if I now have lymphoedema. 
Really appreciate your kind words

Hi Sue,

It sounds like a truly awful time for you getting both your diagnosis and a treatment plan. 12 weeks is a long wait for treatment after such a long and challenging journey to diagnosis. I can hear your distress and frustration in having to get PALS involved to get a start date.

The whole experience must have been emotionally exhausting, having to fight a battle while managing your symptoms and all the worry. 
I also had to go through PALS to get my biopsy results as after 8 weeks they appeared to have fallen into a black hole and no one could trace them.

Some people seem to have great teams and others less so, depending where you live. 

Its also disappointing that they didn’t fully explain to you about the timescale for outcomes and that the radiotherapy continues working for a few months.

You must feel that you have spent your life anxiously waiting and that takes a big psychological toll.

Now that you’ve finished treatment don’t hesitate to contact your team about any symptoms that you’re worried about.

 I really hope that things improve and that you will start healing and recovering in the weeks ahead.

Big hug xx