Metastatic Brain Tumours following Breast Cancer

FormerMember
FormerMember
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Hi Everyone, my wife had breast cancer HER2 + diagnosed in May 2014... she completed 6 courses of Chemo followed by a lumpectomy and 12 months of Herceptin injections. A further 12 months after completing this she was diagnosed with 2 small > 1cm tumours in the right long. This was subsequently treated with radio frequency ablation (basically burnt using high temperature microwaves).  Now we have just found out she has 3 tumours in the brain; this was discovered as a result of me noticing that her spelling had been affected as had her ability to complete her conversation in full. She is on 2 x 4mg steroids at this time to reduce the swelling around the tumours which is having a positive effect although we understand this is not a long term solution. Following a very quick turnaround with MRI and follow up consultancy we are now being recommended to have the following treatment:

1. Burr hole surgery to drain the tumours of expected fluid and also to confirm type via biopsy.

2. Cyberknife Radiotherapy to further reduce the tumours and therefore reduce the brain swelling around the areas.

Has anybody experienced a similar diagnosis and/or suggested treatment? We are obviously worried about side effects more so with the Cyberknife procedure.

Has anyone got any successful stories of the tumours being "managed" for any length of time after Cyberknife treatment?

From what I have read I understand that the if we don't accept any treatment then the outcome will likely be death within 3 months.

However I have not been able to find any positive detail of other people having this treatment and any suggestion that it does increase life expectancy.

Any positive news would be most welcome at this time. 

Thanks.

  • Hi, I had a secondary brain tumour treated by Cyberknife  6 years ago.( My primary was kidney cancer) I have regular MRI scans to monitor the area and am on a very low dose of steroids , 0.5 mg per day to keep any potential post- treatment swelling around the tumour site at bay.

    The Cyberknife treatment was 20 mins/ day for 3 consecutive days. It is very directed radiotherapy and as far as I know doesn't have the same side effects as conventional radiotherapy. (this doesn't work on kidney cancer)

    The only down side I've personally experienced is that I cannot get off the steroids completely. But I suspect that's due to the length of time I've been on them and the fact I probably don't produce enough of my own, having only one adrenal gland. 

    All in all, cyberknife worked for me. After all, I'm still here after my original diagnosis  and surgery 14 years ago.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Btw, my brain tumour was approx 3 cm in diameter

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Thanks fl0ralW0man, it really helps hearing success stories like this … well done with all you have been through and long may your managed health continue. I am praying my wife has a similar response to yourself. All the very best.

  • Hi JW23

    i was diagnosed with 2 brain mets from her2+ breast cancer in July 17 treatment was surgery followed by cyber knife. I too was terrified but it was all really straightforward with no noticeable side effects. Scans showed a recurrence in one of the sites in nov 18 and I had a repeat of the craniotomy followed by 1 x 15 minute session srs (cyber knife). I am currently really well, to the extent that I did a 5km swim at the end of March! breast cancer is apparently really susceptible to radiotherapy.

    Best wishes to you and your wife

    katherine

  • FormerMember
    FormerMember in reply to Katherine80

    Hi

    It is very early days for me. I was diagnosed with two large brain tumours a month ago. I had to have two separate craniotomys to remove them. There are many risks and I was scared. Thankfully I got through the surgeries and so far doing ok. I had one 3.5 weeks ago and the other a 1.5 weeks ago. I finished the steroids on Saturday. Next I work towards getting back to work. I too had problems with spelling and conversations. It was explained to me that the second tumour was growing where it effects my speech and language.

    My original cancer is lung I should have said.

    So far the only minor complication I have had is that some fluid has leaked through the first one under the skin. Uncomfortably but hoping it will drain with time, which will likely happen.

    Mine grew very quickly (nothing there when I was checked end of December) so I will be rescanned six weeks after surgery to see if there is any signs of recurrence. If there is anything and it's in the original sites I will be offered cyber knife to tackle it.

    Really tough choices, I wish you all the best on deciding.

  • FormerMember
    FormerMember in reply to Katherine80

    Hi Katherine,

    I am so pleased to hear of your successful response to this vile disease and even happier to know that you are continuing to lead such an active life :-) It's this kind of result that brings so much hope to everyone in a similar position. We have opted to start the initial burr hole and drain treatment toward the end of next week followed shortly after by Cyber Knife. Following reading some fairly old medical journals online she suddenly started having doubts about her quality of life, risk and what benefit this process could possibly give her and was considering doing nothing. I therefore joined this group to get some first hand information and detail regarding real people that had gone through similar. Your story is fantastic and will give hope to many including my wife and I. Thank you for sharing this detail with me, it is very much appreciated. Best wishes to you for the future continued good health.

    Jason

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Ginajsy,

    Thank you for sharing your story with me. I am very pleased to hear that your tumours have been tackled successfully and hope to hear that all is OK after 6 weeks. The couple of responses I have had to date have been very positive regarding Cyber Knife and if you should be required to undertake this procedure I hope the replies here give your a boost of confidence as it has myself.

    All the best for your future and keep positive... easier said that done I know but the good stories on this site do at least lift the spirits at times of despair.

    Thank you again 

    Jason

  • Hi,

    my 41 year old partner was recently diagnosed with stage 4 kidney cancer that had spread to lungs and 3 tumours in the brain. He wasn’t offered burr hole surgery but was offered gamma Knife. We went for it and that was 2 months ago. Recent scans show the swelling has reduced and the tumours are stable with no further growth. Although the tumours haven’t yet shrunk the oncologist told us it can take up to a year. He also said the gamma knife could get rid of them completely over time with just this one treatment. I would recommend it. It was virtually pain free and my partner had anxiety about it, they gave him a high dose of diazepam and he slept through most of it. 

    Im not sure if my story helps but I would say trust the oncologist in this scenario, if they think the burr hole followed by gamma knife is the right way to go then they know best (or at least we hope they do).

    I hope your wife makes a speedy recovery whichever treatment she chooses and gamma knife appeared to be a piece of cake with no severe side effects/scars etc, a slight headache the day after (I say this having been sat on the sidelines and not actually having to go through any of it myself)! My partner did say to me afterwards he would do that again no problem if he had to as it wasn’t invasive, it was painless (although he was scared initially about what to expect) and he got to go home the same day. 

    Lou

    x

    Dream as if you will live forever. Live as if you will die today - James Dean
  • FormerMember
    FormerMember in reply to Lou1986

    Hi Lou,

    This is massive encouragement for us both. I sincerely thank you for replying and sharing this positive experience. To hear such stories must help the whole of the community who are sharing these awful times; responses such as this offer hope of extended quality of life even if the cancer cannot be totally eradicated.

    The 3 options we were given were 1. Do Nothing (2-3 months life expectancy) 2. Gamma Knife and 3. Burr hole drain followed by Gamma Knife. The neurologist seemed to favour option 3 but it carries risks as it is physical entrance through the skull. We originally thought this would be best but the fear factor has come into play regarding the possibilities of stroke, infection and incapacity to lead any sort of "normal" cognitive life. So to hear that Cyber Knife alone in your partners case is reducing the swelling is very good to hear.

    Once again many thanks for your reply, and I very much hope your partner has continued success and you both go on to have many more years together.

    Kind Regards,

    Jason

  • FormerMember
    FormerMember in reply to Katherine80

    I have had a very weird cancer journey.

    I was diagnosed with breast cancer in 2009 which was caused by oestrogen. I had a mastectomy, reconstruction and told I was 'cured;, given tamoxifen and continued with my life.

    In 2012 it returned to my bones (spine, ribs, shoulders) and was told I had 5-10 years. I was put on oral chemo and then to hormone therapy.

    I survived 7 years and then in July 2019 it spread to my brain. I had 3 tumours - one removed surgically and the other 2 with microsurgery. Originally I was told this was 'end-stage' cancer - the last diagnosis you want to hear!

    The most surprising result is that the brain cancer had changed to herceptin positive, so I am hoping to get on some trials. Now I am told that when/if the tumours return, I have an 80% chance of removal recovery.

    Is there anybody out there who has gone through this experience? If so, what treatment did you receive and how are you doing?

    I am very angry,very frightened and very confused. Every website seems pessimistic, and I need some optimism.

    My hospital care team have been amazing. But I live on my own - no partner or children, and all my family live 60 miles away. Yes, I have good friends where I live but don't want them as carers. Do I just play the waiting game?

    Would appreciate any advice or experience to give me something to cling to.

    Many thanks.

    Tobie