Anaplastic astrocytoma

Hi

I'm so sorry that you received news that your partner's tumour is inoperable. However, it's good that he'll be starting chemotherapy and radiotherapy and hopefully you'll both feel more confident once you know exactly what the treatment plan is.

I don't know if it's common to seek a second opinion but if you click on the link I've created you'll see how to go about organising one and what the pros and cons are.

I've had a look in this group and I'm tagging Madesp into my reply to you as I can see that they had a second opinion and would hopefully be able to share their experience with you.

x

His there 

It is quite common to seek a second opinion and your oncologist would NOT be  offended. They are used to this all the time.

As a starter You could try the University College London.where we saw Dr Mulholland who also sees patients on a private basis and I recommend The Royal Marsden in Sutton who have trials for GBM.

We rang the secretary of Dr Mulholland and she advised our oncologist do the referral as it would be dealt sooner. 

The problem is that if you don't get another opinion now you may regret it later and wonder if therequired may be something else that could be done .You have nothing to loose .Wishing you the best of luck. 

Thank you so much we really appreciate your advice that is very helpful. X

Hi Latchbrook

Thank you so much for your kind words and advice. We are trying to stay positive and reading positive stories, enjoying as many moments as we can and watching comedies together and with the children. We are going to pursue a second opinion because if we don't I think we will forever think what if. Once again thank you  x

Let me know how you get on when you have the second opinion .

One of my favourite comedy series was 'Allo 'Allo and I know you can get that as a box set. 

x

Hi Wheat,

I just wanted to butt in and lighten the mood a bit. I have the same anaplastic astrocytoma grade 3. Mine is in the parietal lobe.

The diagnosis is not a death warrant. I had an op then radio and chemo back in 2010. Life has had to change somewhat as I can't do lots of things I used to but I'm still here. The tumour is still there as well but I can't have everything.

I have been looked after by the people at Charing Cross and Chelsea & Westminster if you want another option.

Take care.

xx

Hi

Thank you for you message and for sharing your story. This is really helpful to hear and I really appreciate this. 

Having options to seek further advice is helpful. Thank you so much. X

Hi Wheatgilp

Hope you don't mind me jumping in but I would say you have absolutely nothing to lose by getting a second opinion. I don't have the same type of tumour but didn't feel 100% confident with the neurosurgeon (i was initially misdiagnosed). I did mention to him that I was thinking of  a second opinion, and he was actually quite supportive - he said that he provides second opinions for other doctors and its standard practice. I asked my GP how to go about it and she asked if I had a preference where I wanted to go. Her recommendation was the National Hospital for Neurology and Neurosurgery, which is part of UCL in London. That's hundreds of miles from where we live but we decided to go for . We have been with them since, which is the last 6 years.  

Wishing you well, 

T

hi there 

not sure where you are with this now but wanted to share my experience. my husband diagnosed with grade 3 last April, undergone radiotherapy and chemo until December.  We were told in January this year treatment wasn't working and basically he was given a very short prognosis. At that point we asked for a second opinion. The Oncologist was fantastic and totally understood and arranged for us to visit another specialist which we did in March.  The second opinion paid off for us as the surgeons agreed to do another debulk. The second specialist requested my husband to have a scan which has miraculously showed the tumour stabilised !!!!. We don't understand nothing makes any sense but prognosis has now changed.  Don't get me wrong my husband is very ill and much irreversible damage has been done by steroids but he is here and is fighting !! . Had we not went for 2nd opinion we would not have had scan and would have been taking more high dosages of steroids . So I guess what I'm saying is take the second opinion to allow you to make informed choices.  Good luck with everything