Cryoablation for mbc

[Evaf]

Hi everyone,

I found the article below that shows that cryoablation for mbc could be beneficial. Does anybody have any experience of this treatment?

hindawi.com/journals/bmri/2...

Many thanks,

Eva

[Hidden]

Hi Eva,

I looked into cryoablation of the primary tumour and even contacted a private hospital nearby where this could be performed. But I am waiting for the tumour to shrink some more before I would be a candidate for this. I don't think it's offered on the NHS, so if I go ahead with this in the near future I will go private and pay for it. I will mention it to my oncologist next month though. I forgot to last time.

Sophie ❤

[Evaf in reply to Hidden]

Hi Sophie,

Thanks for your reply. Did they mention how small it needs to be before they can do it? Is it less than 2cm? Did they mention costs?

I will mention the study to my onc when I see her tomorrow.

Many thanks,

Eva

[Hidden in reply to Evaf]

Hi Eva,

I didn't speak to an oncologist at the private hospital. I just heard back after emailing them and I was advised to make an appointment with an oncologist so I could be examined and have some scans.

But from what I read on their website the tumour needs to be small and I think it costs about £1600. I want to run everything by my oncologist before I proceed. I have a feeling she will advise me against cryoablation. She's very traditional in her approach, so unless there are lots of studies to show cryoablation is effective she will probably say to leave the primary tumour alone (which I don't think is the best approach. I want it gone). Please let me know what your oncologist says tomorrow!

Thanks,

Sophie ❤

[Evaf in reply to Hidden]

Hi Sophie,

Do you mind telling me which hospital it was? It does not seem as expensive as I thought.

I had an ultrasound in December and primary has shrunk by more than half so I am not sure whether to carry on as usual and see if it all goes or try to get rid of it now that it's shrunk. I will have a word with my onc tomorrow. I think I would prefer cryoablation than lumpectomy!

Take care,

Eva

[Hidden in reply to Evaf]

Hi Eva,

I was advised to contact Dr Charles Wilson at the Nuffield Hospital in Cambridge. The number is [phone]. I just spotted another number, which is probably for the main hospital: 631696.

Sophie ❤

[Evaf in reply to Hidden]

Sophie,

You are a star! I will definitely contact him. I have been researching about Ablation For Cancer, I think it is part of Spire Southampton. I have emailed them as well. I will let you know if I find anything.

Many thanks,

Eva xx

[Hidden in reply to Evaf]

Hi Eva,

You're welcome! I will see what my oncologist says in February and if she is not very forthcoming or supportive then I will go ahead and contact Dr Wilson. I didn't contact the hospital directly though. I went through a third party site, who assessed my questions and then passed on what I had to say to Dr Wilson. So it may be the same process for you.

Take care,

Sophie ❤

[Evaf in reply to Hidden]

Ok, many thanks. I have emailed themxx

[Hidden in reply to Evaf]

That's great! I hope you get some answers. I was also looking into vascular embolisation, which aims to cut off the blood supply of tumours.

[Evaf in reply to Hidden]

Hi Sophie,

I did not see my usual onc today but the registrar's and I mentioned cryoablation to him but he had never heard if it for bc. I left the article with him and he said he would read it 😊.

I'll check vascular embolisation, never heard of it.

Eva

[Hidden in reply to Evaf]

Hi Eva,

I saw my GP for my monthly Zoladex injection today. I asked what her thoughts were on alternative therapies and treatments and she mentioned some she approves of such as acupuncture. She was also not aware of the mainstream use of cryoablation for breast cancer under the NHS. So then I mentioned about how it is offered at the private hospital in Cambridge that I told you about the other day. She was honest with me and said it's not her area of expertise, so I shall have to talk to my oncologist about it in February. But she did make an interesting point about how I am vulnerable and there are charlatans out there waiting to exploit me and other cancer patients and how she wanted to protect me from harm. I agree with her, which is why I don't just accept every new idea or treatment that comes along. I research it and then run it by her, my oncologist, oncology nurses or a pharmacist, who can then advise me further on the topic.

Sophie x

[Evaf in reply to Hidden]

Hi Sophie,

Are you sure they offer it at Cambridge? I have just had a reply from Dr Breen at Southampton and he said they perform cancer cryoablation on most areas but not on breast! It is currently very experimental but promising xx

[Hidden in reply to Evaf]

Hi Eva,

No, I'm not sure. I was told to contact Dr Wilson. I presumed that as he was in Cambridge, that cryoablation of the breast would be offered there. Maybe he's the consultant to talk to, but it's offered elsewhere. I will have to contact him to find out for sure. I haven't spoken to him personally. He received my message, but we have not spoken in person. Sorry if my earlier message was misleading.

Sophie

[Hidden in reply to Evaf]

Hi Eva,

I just found the contact information for Dr Wilson:

[e-mail]

[phone]

I'm going to contact him directly and see what he has to say. Hopefully cryoablation is offered.

Sophie

[Evaf in reply to Hidden]

Thanks Sophie, I have emailed him yesterday and I am still awaiting a reply. Xx

[Hidden in reply to Evaf]

OK, that's good Eva. I hope you hear back from him soon. Wouldn't it be great if Dr Wilson could help us? I am hopeful! I'm in the middle of composing an email to him too.

Sophie x

[Hidden in reply to Evaf]

Hi Eva,

I heard back from Kim McShane, who is Lead Medical Secretary in Oncology and Dr Wilson's PA. She replied by saying that Dr Wilson does not offer cryoablation. So it looks like I will keep on researching! There are answers out there. We just have to keep looking, researching, asking and not give up!

Sophie x

[Evaf in reply to Hidden]

Hi Sophie,

Dr Breen at Southampton asked me to contact a doctor in Bordeaux who might be able to advise. I will let you know when he replies.

Regards,

Eva

[Hidden in reply to Evaf]

Hi Eva,

That sounds promising! I would prefer to be treated in the UK if possible, but am not against the idea of going abroad for treatment. Did Dr Breen mention any clinics or hospitals locally that use cryoablation?

Thanks,

Sophie

[Evaf in reply to Hidden]

I have asked him about possible treatment in the UK and still waiting for a reply. It seems that it is going to be difficult to get this treatment. Dr Breen is one of the top ablation doctors in the UK and he is not doing it on breast...

[Hidden in reply to Evaf]

Thanks, Eva. Maybe this treatment is still so new that it is not being used that much.

[Hidden]

my daughter was just declared in complete remission following extensive mets to her liver and bones using low dose chemotherapy treatment and Intra-tumoral injection of Ox40 ,cpg and yervoy (no need to cryoablate ) by Dr mark Rosenberg and Dr Jason Williams. I had blogged our journey at teamlayla.blogspot.com. We are still in disbelief

[Hidden in reply to Hidden]

Hi Saliahma,

That is wonderful news! You, your daughter and the rest of your family must be absolutely overjoyed!

All the best,

Sophie ❤

[Evaf in reply to Hidden]

That is wonderful news, Saliahma! I think I saw your post at the Jane Mc Lelland's facebook page. I have heard good things about Dr Rosenberg. Do you know if they offer these treatment in the UK?

Best wishes,

Eva

[Hidden in reply to Evaf]

I am sorry. I am not familiar with available treatment in the US.

[Have-faith in reply to Hidden]

Fantastic news!!! I love it. See....miracles can happen and do! We just never know.

[Have-faith]

Hi. I am in NY. I went to a lecture and an audience member had this done in Mexico. She paid out of pocket and said the tumor had gone. I will have to dig around for her number and see how things turned out for her. This was about 10 months ago.

[Hidden in reply to Have-faith]

It's probably the same physician. Dr. Jason Williams performs this procedure in Mexico City and it is definitely out of pocket

[Evaf in reply to Hidden]

Hi, Dr Willians has a facebook page called Immunotherapy and I have joined it to find out more. It seems such promising treatment (it seems that he combines Immunotherapy with cryoablation to get rid of tumours). Very glad some doctors are thinking outside the box and finding innovative treatments that can work. I am very happy for your daughter. Things need to change, some of the current procedures such as masectomy still feel a bit medieval some times! 💕 Xx

[Jennifer5249]

Hi! I am in NY and have had cryoablation twice. Diagnosed mbc Aug.2016 with met to rib. Started Ibrance and letrozole. Cryoablation was done Feb. 2017 on rib and nothing new showed up for months. Small dot on CT scan in summer and it continue to grow so I was taken off Ibrance in Jan, Changed to Affinitor but after 3 months had to stop as it was affecting my lungs. In July I had cryoablation to the lung pleura , they tell me it may have been where the rib was close to it and may have been left from the first lesion. The lesion has shrunk in the last CT scan(Nov.) and next scan is end of Feb.

[Evaf in reply to Jennifer5249]

Thanks for replying Jennifer. Glad it is shrinking. Did you have the cryoablation on your rib but not your breast? I am thinking of having it done on breast but I think this is still considered experimental.

What did you think of the procedure? Does it hurt!? Xx

[Jennifer5249]

I only had it done on the rib and then later on the tissue behind the rib. I had a mastectomy in 2008. There was some discomfort but ibuprofen handled it....some of the discomfort could have been from the lymphadema on that side, it probably aggravated it some. Less discomfort then being opened up and then stitched back together

[Aimee95 in reply to Jennifer5249]

Good morning, if you don't mind me asking....Who did the cryoablation in NY?

[Jennifer5249 in reply to Aimee95]

Dr. Petroziello at Roswell Park Cancer Institute in Buffalo

[SeattleMom]

Hi, Eva!

That's really an interesting article.

When I was told that my primary tumor (located in my armpit) had metastasized to my spine, I told my cancer surgeon that I would like to have the tumor removed, despite the fact that I was aware it had already spread. He told me that, typically, that is not done because the success of any follow-up treatment would be measured by the subsequent shrinkage and/or disappearance of the tumor. This sounded logical to me, so not sure how removal of primary tumor is beneficial when there is spread elsewhere in the body?

Thanks for sharing!

Linda XXOO

[Evaf in reply to SeattleMom]

Hi Linda

It seems that there is conflicting info about removal of the primary among doctors. Some think there is a benefit in getting rid of it, as the study mentions, especially if cancer is stable.

My onc sais that having surgery, such as a lumpectomy, could interfere with treatment, etc. but I am thinking that, with cryoablation being less invasive, it would not disrupt as much.

I will keep investigating! This is still very new and experimental but seems promising.

Eva xx