Update on treatment

Hello AllyL 

First of all I am so happy to hear you full of resolve towards getting everything treated, and I am in awe of what they are prepared to do.  I would want all affected nodes removed too.  It is interesting what you say about more aggressive treatment outside the UK, we are in Spain and our friend is being treated for cancer and had several lymph nodes removed on Monday, we are waiting to find out how he is.

Overall your results seem excellent and I will keep everything crossed that this further treatment will slay the beast.

Big hug

Irene xx

Thank you for the positive vibes Irene.

When I had my PET scan the Doctor very kindly translated the results and gave me his opinion on the priority areas. We also got chatting about lymph node removal and he told me they were amazed that my surgeon had been able to remove 3 paraaoertic nodes. He said finding something so small amongst the other nodes is very difficult. He also mentioned scarring and potential nerve damage.

He also told me about a recent patient who was receiving treatment privately in Germany. He had prepared the PET scans and they were preparing to remove 12 active nodes from around the body. 

I had keyhole for the last lot and I didn't feel a thing, so more pain free than chemoradiation. In conclusion I think there are lots of ways to get good results and surgery must be one of them.

I will also be keeping everything crossed for your friend in Spain.

Ally xx

Hi there AllyL ,

I’m really pleased that your team have what sounds like a supercharged plan of action & are ready to move forward with it so quickly. It all sounds really positive.

I also find it interesting about what you’ve both said about specialists in other countries being willing to implement more aggressive interventions. I wonder what makes them so reluctant to do this in the UK? I wonder if like so many things here it boils down to finances! 

I've absolutely everything crossed for you that your next steps are successful in seeing you free of this disease. Sending much love & support. 

Nicola 

Thank you for the support Nicola.

I really can't find anything medical that supports the one lymph node only policy in the UK, so I suspect it boils down to money.

I spoke to a couple of women in the UK with supraclavicle lymph nodes involvement, anal cancer stage 4. One was refused surgery for 3, one only NICE guidelines. The other woman was told no. She is waiting for scans and collectively they are now the size of half a tennis ball. I could scream at this.

I also read some information that suggested that throat cancer surgeon's are more likely to remove them, if the cancer has advanced.

If it puts the cancer to sleep in that area, that's a win for me. I have seen pictures of how big these nodes can grow, it's scary. Also if surgery does not work, early radiotherapy is surely better than late palliative intervention.

My surgeon will say to me, if we have the skills and the technology, why would we not use them. The hospital does not have waiting lists for surgery, so everything is fast.

My treatment comes with it's challenges, but I consider myself very lucky that they have not given up on me.

Ally xx 

Hi again AllyL , your surgeon sounds very wise & many others should follow suit in my humble opinion!

It makes me angry but mostly incredibly sad that the options, skills & technology are out there that could save lives or extend good quality of life but are not being utilised. I understand that the NHS doesn’t have a bottomless purse but something needs doing so that these options are made available! 

It’s great that your team seem to be two steps ahead & have a plan B in place too, as you say avoiding late palliative intervention.

I was just talking to a friend the other day about cancer treatments & the trade offs we make to get rid of this disease, we look ok but it leaves behind a legacy, having said that, like you, I’ll be forever grateful for my treatment & extremely thankful that the treatment is out there. 

Nicola 

Totally understand the financial constraints, but palliative care is so expensive. Early aggressive intervention might save some of those costs for a number of individuals.

I was reading a medical article this morning about the role of gynaecologists in early detection of anal HPV. Quick swab of the anus during the smear for high risk patients would result in early detection, even pre cancer. Kits are being looked at for screening.

They were also looking at types of treatment after early detection. I know you were part of a trial with reduced radiotherapy. They are looking again a how many treatments equal effective treatment.

I'm not holding my breath for any of this as the only licensed immunotherapy drug has still not been authorised. It's now available in Canada, Australia and many parts of Europe. We have limited effective chemo drugs and no immunotherapy. Anal cancer is being short changed, because we suffer quietly, often due to embarrassment. Don't get me started on your battle with after effects.....totally shabby.

Sorry to 'rant' on.

Ally xx