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A little lost

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Re: A little lost

Hello, Lommey, 

I have a problem with my voice which is due to one of my lung tumours pressing on my lyryngeal nerve. I had to force my Consultant to give me a scan on my thorax because she thought it was just anxiety causing my voice to change (as if...). 

I'm glad although your symptom was different, that you were able to have laser surgery and radiotherapy. You've already come through so much. I mentioned radiotherapy to my Consultant yesterday but she didn't think that would be the treatment. God only knows what is. She seemed to think the Paxlitaxel was working and should be enough... but what happens when I come off it? I sound like Minnie Mouse and can't really project my voice in the lower pitch. Some days I barely have any voice at all. I told her it's a considerable disability and that I wanted treatment (because she wasn't taking me seriously.) 

She's sendng me to an ENT specialist. They will hopefully give me some effective treatment - or point me in the right direction, despite my incurable diagnosis 😭. Sometimes it's really hard work with medical professionals, isn't it? They don't give us credit for knowing our own bodies and although I don't like saying it, an incurable diagnosis puts a limit on what Doctors are willing to offer. 

I think Gillyflower is right. The level of progression is different in everyone and not predictable. Focus on the fact that it is only in your lymph system. There are many effective treatments now. You've come through once and can do it again. 

Hope all goes well. 

 

Angel Eyes

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Re: A little lost

Hi lommey 

I just wanted to give you a hug and say that I hope you see someone soon and get answers to your questions - at least the delay has meant that you have time to process things a bit and get a list of questions ready. 
I’m a little similar to you in that my primary diagnosis was 12 years ago, when I had surgery, 3 FEC, 3 taxotere and 6 weeks of rads. I was then on tamoxifen/letrozole for 10 years (as ER/PR +) then last year I got a lump in my groin which caused my leg to swell. Had CT scan and was told I had lymphoma, but the biopsy showed it is in fact stage 4 breast cancer, and it was everywhere throughout my torso and abdomen. I have been lucky in that all this has responded well to fulvestrant/ribociclib combo but I also now have mets in my sternum which seem to be a bit more stubborn 8 months on. 
I hope that you get some answers soon and a chemo plan which helps you, I don’t know much about triple negative I’m afraid.

take care and hugs 

Kinden 

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Re: A little lost

Thank you for your reply I am so sorry to hear your news This covid has made a tough time even more difficult but not being told the results of a scan that’s unfair 
I’ve had radio on my neck vocal cords It’s not an easy treatment Stay strong jelly is good 

I was told chemo was the only treatment available to me and they where not even sure if it would have any benefit 

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Re: A little lost

Hi Lommey,

I find myself in a similar situation to yourself. Diagnosed 8yrs ago with bilateral bc and secondaries in my spine,rib & pelvic area at initial diagnoses. Been on hormone treatment after having bilateral mastectomy’s and disease been stable. Just before Christmas 2019, ct scan picked up “multiple tumours” in my lymphnodes in my neck,biopsy revealed it’s triple negative, it had initially showed on a scan april 2019, but i wasn’t told!! i had ultrasound done as scans are back logged due to covid. it showed largest tumour has grown by 4mm, i know that’s not a lot but it takes the tumour to 35mmx16mm😔 anyhow i’m now waiting to start radiotherapy..don’t exactly know or understand what it will do but I know it’s worrying and scary! 

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Re: A little lost

Hi Lommey,

I'm so sorry to hear about your experience, it sounds like you have been through an awful lot, especially on your own due to Covid as well!  Its a lot to take in xx

I don't know much about breast cancer spread to the lymph system unfortunately, hopefully there will be people on here who do.

Once the breast cancer has spread to other parts of your body, its classed as incureable but that doesn't mean that you can't live with it for many, many years.  If your other scans came back clear that is one bit of good news! 

It sounds like your Oncologist already has a treatment plan in place for you as you mentioned you've just finished 4 cycles of chemo.  They'll tell you what the next steps are in terms of treatment but usually it means that you'll need to be on some form of medication for the rest of your life (not necessarily chemo).

I was told by my Oncologist that cancer that has spread outside of the breast area always progress at some point in the future (ie. other tumours will grow) and the most common place for breast cancer cells to go is bones, liver, lungs and brain, in no particular order.  However, the rate at which it grows is different for each person.  Many people are able to live with it for very many years thanks to a whole lot of advances in breast cancer medicine over time.  Some people can go into complete remission too.

It would be worth asking your Oncologist about what you can generally expect and what your treatment plan will be, as they will be able to give you that information based on their knowledge of your type of cancer.

Sending best wishes to you, don't hesitate to ask more questions or ask for help xxx

 

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A little lost

Hi I’m just a little lost as I haven’t been able to talk to anyone due to the covid 

I was diagnosed with breast cancer triple negative 13 years ago so had a double mastectomy and 6 rounds of fec All went well and I was signed off 10 years later 

4 years ago I got cancer in my vocal cord Not related I had radiotherapy and all went well for 2 years then it returned I refused a voice box removal and had laser surgery very successfully 

At one of my check ups they discovered a lump in my neck Just under my chin The biospy came back negative which was great but it was causing pain so they removed it 

When I woke from surgery I was told that it had been cancerous and was in my lymph system after investigation it was return of breast cancer not throat 
I was offered chemo of which I have just finished 4 doxel 
The only thing I was told was that it was uncurable and due to covid having been able to speak to anyone 

I had scans organ and bone all came back good 
im not really sure what this means for me 
When I look at the  posts here I think I have been very lucky and I have no other tumours 

But if it’s in the lymph nodes and has been there for 13 years am I just waiting for it to turn up somewhere else ?

Dont even know what questions to ask when I do finally get to speak to someone 

Sorry for long post