Anal cancer - lymph node spread. Help and advice

Hello Antakayab8cb3b 

Thank goodness for  your oncologist and I am so relieved that you have a good rapport with him.  It just goes to show how the professionals can differ widely in their opinions.  I am afraid I don't remember the post that you are talking about, so I can't help you there.  And I am sorry this route of surgery is not one I have experience of either.  Is it possible that your oncologist can advise on potential surgery elsewhere?  I completely understand why you don't want to leave any stone unturned.

However, I just wanted to wish you well in what has undoubtedly been an absolute rollercoaster for you and hope very much that the new chemo regimen is successful in treating your metastasis.

And if you need support or a virtual hand-hold we are always here.

Big hug

Irene xx

Hello Antakayab8cb3b

I don't have any experience of TPE surgery, but I now have distant metastic lymph nodes after chemo radiation successfully treated my primary tumour.

I'm being treated abroad, so my experiences might be different from main stream UK hospitals.

My surgeon and oncologist have never indicated a timescale for my survival, oncology have told me my cancer is aggressive, unlikely to be cured, but they can't predict my response to the many combinations of chemo and immunotherapy. My surgeon, who removed para aeortic lymph nodes within weeks of getting the PET scan results in January. He has not ruled out more surgery, HIPEC or radiotherapy. At the moment I am receiving carbo/Taxol, one more session, then PET scan and review.

So thank goodness you have an oncologist with a different view to your surgeon. I would absolutely look for a second opinion and would like to suggest that you ask your questions on the living with stage 4 - Bowel Cancer UK FB page. This question has been asked many times and you will receive great info on the top surgeon's and oncologists in the UK, even details of their PA's. 

The page is also full of treatment info, drug trials and stories of people living their lives receiving maintenance chemo.

What I have noticed from reading many stories, is private treatment does not seem to be under the same restraints as the NHS. Doctors appear bolder with surgery and immunotherapy treatment, that has not been signed off in the NHS, may be available. At the very least a second opinion will give you peace of mind that you have investigated all options.

Wishing you the very best for the future and please keep us updated.

Ally

Thank you so much for your reply. 
My oncologist is very good and I do trust everything he is saying to me but I have read so much and that there is a lot they can do. 

Im just unsure what would be available to me.
I am a little reluctant to ask about 2nd opinions etc because I don’t want to jeopardise the rapport we have.

I start the next round on Tuesday- not looking forward to it but I have to go with it. 
hopefully this time round won’t be as bad as the first time  

Hi Ally

Again thank you for taking the time out to respond

I have ardencarcinoma which is the more aggressive kind too. 

I have joined the page on Facebook and after just reading a few of the posts on there I already have found out a lot. It has certainly ignited some fire in my belly.  I just didn’t know where to start as the information is a minefield but starting there with other people’s experiences is great so definitely a big thank you for the recommendation. 

My oncologist hasn’t even mentioned immunotherapy at this stage it hasn’t even occurred to me to question why but I assumed it was because there are other things they can try first. Maybe I should ask!

My surgeon is described as one of the best outside of London. So maybe I should ask what the difference would be if I went to London.

He also I a lovely man but when he delivered the news a few weeks ago I didn’t think he handled it well but I suppose there’s no nice way of delivering that kind of news. It certainly floored me. 

Gemma 

So pleased you are finding the group useful Gemma. Like yourself I was surprised about the treatment options and how long people could not only survive, but have good lives on maintenance chemo and immunotherapy.

My way of thinking about second opinions is, complex cases need lots of experience and input from a medical team. You would simply be bringing another person's insight to the discussion and that might make a difference to your treatment, or simply support the original treatment plan. 

My team have certainly been positive about me advocating for myself. Irene very kindly shared information from her leading oncologist and I showed the clinical information to my oncologist and they agreed to the chemo. They were very receptive.

If you are going to speak to your oncologist regarding imunotherapy, don't forget to discuss bio markers. You might have to pay to have them done, but they are very insightful regarding the success of future treatments. You will read more about this on the other site.

Ally