Sisters diagnosis

Hi 

Not sure if you can help . My sister was diagnosed at Xmas .she had surgery and was given chemo as a precaution. However , she now has brain Mets and they are not offering her radiotherapy . Do you know of any treatments or doctors that may be able to help . As they are not giving her any hope .

Thanks xx

[hedgehoggy]

Hi Maree48

Did your sis have lung cancer or something else? What was the surgery?

Best wishes 

Hoggy

[Hidden in reply to hedgehoggy]

It is lung cancer .she had the top love of her right lung removed . All the scans were clear and then 4 weeks ago she had a seizure . That's when the brain mets were found xx

[hedgehoggy in reply to Hidden]

Hi ask the ONC. About stereotactic radiosurgery. She may be suitable. It depends on how many tumours in the  brain and also not for everyone but it may be another route to go down. Look it up.

Hoggy x

[Hidden in reply to hedgehoggy]

Thanks .will look into it xx

[Peterkin102]

my wife was in a similar situation. she had her left top half lung removed in Dec 14 and had four courses of Adjuvant chemo. then in April 15 she was diagnosed to have two brain mets. she's cancer free now after undergoing Stereotactic radiotherapy, craniotomy and now on Tagrisso.

don't give up. she may need a second opinion.

Peter

[Inula]

Hi Maree 

I wholeheartedly agree with the previous comments. My husband had lung cancer with brain mets and was offer steriotactic radiotherapy.  Sadly he didn't get to have it but we made it to the appointment to do pre checks. It describes seem like it's a pretty grueling procedure with many hours under the knife so to speak but I believe the results are excellent. I have also known other lung cancer sufferers with brain mets who have had just general radiotherapy to the brain. Obviously this isn't targeted in the same very precise manner so is nowhere near as effective. 

Don't give up. Ever.

Netty

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Maree48,

It may well be worth discussing stereotaxic radiotherapy with your sister's Oncologist and asking for an explanation as to why this is not an option for her. The treatment of brain metastases can be challenging for Oncologists due to the variety of factors which need to be considered when deciding on treatment plans for individual patients. 

Usually a detailed individual assessment is carried out taking into consideration each patient’s prognosis, the extent of their disease, the location and size of the metastases and whether they are single or multiple. In addition, other things considered are assessment of the patient’s fitness as well as their ability to withstand the treatments available. This is usually discussed with other members of the multidisciplinary health care team. 

It is important to remember that not all cancers are the same. Some are more aggressive and/or less susceptible to certain treatments than others. For this reason, prognoses vary greatly from tumour to tumour and person to person. 

Kind regards

[Hidden]

Thanks for your reply . My sister has 5 mets to her brain . The oncologist has said there are too many for stereotactic radiotherapy ,they only do it if there are 3 or less. We have asked for a second opinion , as they do not offer whole head radiotherapy any more either . 

[Rachelhols]

Hi Maree, my husband has two Mets and he had whole brain radiotherapy a few months ago which has stabilised his Mets and reduced them slightly. Persevere with asking about where she can go for whole brain radiotherapy. Have you been onto Braintrust.org.uk, really good site and if you email them about your sisters diagnosis thy may help with advice. They will also offer to pay for a consultation in London to see a specialist if you can't afford it and only ask for a bit of fundraising in the future, but that is only a request not a 'must'. I've found them to be really helpful. 

Have they put her on Dexamethasone? my hubby is on it for brain swelling. Sleep is affected by the steroids but he generally has no headaches now. Keep me posted X

Rachel

[Hidden in reply to Rachelhols]

Thanks Rachel for your reply . My sister is on 1 steroid  tablet a day and a anti seizure tablet . They seem to have controlled the seizures and if you saw her you would not know that she was ill . I will look into the brain trust thanks for that tip . She knows it is terminal and just wants as much time with her family as she can . I do feel that the hospital have just given up on her . It's good to hear that the radiotherapy has helped your hubbie and I hope this continues .

Take care 

Maree xx

[Rachelhols]

I really feel for you Maree, I have a sister and it's a very special relationship. 

I understand how you must feel about the hospital giving up on her, I feel the same sometimes with my husbands treatment. All I can say is, don't give up, push them for help, advice and information. This is hard sometimes, particularly when you are feeling frightened. Don't be afraid to ask for a second opinion from another hospital if you know of another oncology hospital near to you. 

Happy to help in anyway I can as we are now 5 months down the line with Daryls treatment. Message me privately if preferred.

Thinking of you

Rachel X