Just diagnosed in the uk

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Anonymous
Anonymous Member Posts: 1,376
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY
Just diagnosed in the uk
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  • Anotherone
    Anotherone Member Posts: 633
    edited July 2019

    hi all

    I am 46, had stage 3c her+ weakly Er+ breast cancer in 2006, had surgery chemo radio herceptin for a year.

    A week ago had chest xray and ct/bone scan as a result of feeling breathless and having cough. My lungs have multiple lesions in all lobes with the bighest one being 3.5x4.5x6 cm. Lymph nodes in mediastinum and molars ones affected.

    No other lesions in bone or stomach noticed.

    I still have not seen oncologist or had biopsy yet.

    Questions - with this extent of lesions is it feasible to have them controlled as if it is not I may as well gear to palliative care.

    Re biopsy - they planned bronchoscopic one and if not successful then CT guided transtoracic. Does it make sense?

    Any other warnings or suggestions ?

    They fo not do oncotype here routinely I am afraid and I am ploughing now trying to find more info about options

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2019

    Anotherone - We're so sorry you have to be here, but so glad you found us. We know you'll find lots of knowledgeable members here who can offer their guidance and support and hope they can help you with your questions. Please, don't forget to fill out your Profile so others can see your diagnostic and treatment information. Doing this will also help them help them answer your questions. Let us know if you need help for that!

    Best wishes, and please, come back to let us know how you're doing!

    The Mods



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  • jensgotthis
    jensgotthis Member Posts: 937
    edited July 2019

    Hi AnotherOne,

    I know women who've been living with Her2+ lung mets for 10+ years. I hope your team presents treatment options for you that are tolerable and that your cancer responds. A biopsy could make sense so that they can see if your receptors have changed, therefore opening up your treatment options. You might want to search for Lung Mets on the community board search function so that you can read and hear from more people who have been living with this. I'll try to find some links for you too.


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  • pajim
    pajim Member Posts: 2,785
    edited July 2019

    Anotherone, I'm so sorry you find yourself here. If you are once again HER2+, and if I were you I would assume so, there MANY more HER2+ medicines than there were in 2006.

    You don't have to agree to any treatment you don't want to, but the HER2+ (like herceptin) do work well. You might want to give one or two a chance. Since it's been 10 years your lesions are very likely to respond.

    Don't make any hasty decisions. This diagnosis is a life-changing event. You need time to get used to the idea, and to explore treatment options.


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  • jensgotthis
    jensgotthis Member Posts: 937
    edited July 2019

    hi AnotherOne,

    Many thanks to Grannax for bumping the thread on lung Mets. Here’s the link: https://community.breastcancer.org/forum/8/topics/780588?page=68#post_5422479

    There is a lot of good info here and wonderful women who you can chat with about treatments, etc....another very good thread to check when you’re ready is called, Life is not over after a Stage 4 dx, really.

    These early days are so rough. When a plan is put together, it tends to get easier for most

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  • Anotherone
    Anotherone Member Posts: 633
    edited July 2019

    thank you ladies. I found the lung thread already and have read half of it. What are the ideas , os herceptin better to be used in combination with another agent? Not making hasty decisions is difficult as figuring it out requires time and I am afraid that is what I not have. I have sob, cough, feeling of pressure and kind of like slight burning feeling in my back - the latter is actually quite pleasant.

    Sob and cough was sudden , I felt it just for a month and just 2 weeks ago I first time could not play squash properly because of it and thought "I have to go to doctors again". In these 2 weeks it has got worse I think so I am worried I do not have time for research. Very frustrating is squabbling with Aviva on whether it is going to cover cancer treatment or not - first they say they will not because a claim arising from BC was declined 2 years ago . When I point out it was declined because it was implant change and they argued they do not cover COSMETIC treatments arising from cancer which happened when I did not have insurance. Then they change the story and say they do not cover it because I did not have a 2 year clear window because I had mammograms ! To which I point out those were on a different breast , prophylactic , they hum and go to talk to someone else in the department and so it continues..

    In my primary time I was a frequent visitor of YSC forum - anybody knows why it dwindled down? I looked at it now , there is like one post a year there. I regretted not logging in in the meantime anyway just to cheer up newbies but they changed something with registration and passwords so I just could not use my old username .

    Off to read about dosage of panacur:)

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