73.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Grade 3C now with Secondary Lymph Node Involvement looking for advice

16 REPLIES 16
Stephie23
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Sue, I'm sorry to hear that you have had to move house - I hope that you are settled now.
I'm pleased that you are gaining a second opinion. It's so important to be confident in the medical team responsible for your treatment.
My cancer is HER2+ so I am on herceptin not hormone treatment. My oncologist has said if the herceptin doesn't stop any progression he will start me on kadkyla which is a new treatment for HER2 + cancers. I'm seeing him again in October following a three month scan.
I hope that you feel happier having been seen at the Royal Marssen and have a treatment plan in place.
Take care and look after yourself. Love Steph xxx
2catlady
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi,sue,so sorry about the tumours coming back. Yes,my new primary or not sure if it was secondary as still in breast?!grew really fast 10cm in 8 weeks !! Very scary.
Glad your house move went okay,but not fair that you had to move because of this awful disease .
I hang about on the bone met thread mostly,but I'm all over the place too I jump in on many threads to try to offer advice and support like the rest of us do.
Huge hugs,Helen xxxxxxxxx
SunshineSue
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

HI Helen

 

How are you doing? I've been moving house which was 'fun' to say the least.  Hope you are ok, I will catch up with your news on the other threads...did you say the lung mets is the one you go on most frequently?

Hugs to you and look forward to hearing from you

love Sue xxx

SunshineSue
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Steph

 

So sorry I haven't replied but I have had to move house as I couldn't afford my mortgage anymore now I am on disability pay.  To be honest I am pleased as I haven't got the huge pressure of paying that every month. 20 years and 4 kids later though you can imagine what a task it was, it took 16.5 hours to move everything and I am still unpacking and feel completely exhausted!  Thanks so much for writing and yes this is reassuring for me. Can I ask whether yours is ER positive and how long ago when you were first diagnosed? As mine came back 6 weeks after chemo the Onc just seems at a loss to know what to say and can only talk about the letrazole which I'm on, which doesn't seem to be working as the tumours in my groin are growing by the day and now really painful. I have an appointment at the Royal Marsden as I asked my GP for a second opinion.  I know there is no miracle cure just need an Onc who is more proactive and prepared to discuss more options which may be available later on if these lumps continue to pop up in the lymph nodes and later on when it spreads as he said it is 'more thank likely to'.

 

Anyway, it is lovely to hear that your chemo has worked you must be thrilled, I shall be keep everything crossed for you that it stays away.  Lovely to chat and thank you again for getting in contact.

Big hug

Love Sue xxx

 

 

2catlady
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi,sue ,ah,thank you,that's very kind of you to say that.
Huge hugs to you too,Helen xxxxxxx
Stephie23
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Sue. My situation sounds v similar to yours. I was diagnosed with a recurrence in lymph nodes in my neck and chest wall in January this year. I have just completed 6 cycles of GemTaxol chemo and then had a scan. Saw onc today for results and lymph nodes have resolved - amazing!! It's the best possible news. Onc had expected to follow up with radiotherapy but doesn't feel I need it a present so is keeping it in reserve. So I will continue on maintenance herceptin and he'll scan again in three months.
Onc is always v positive. I'm sorry your experience with your onc is not the same. He said it was good that my cancer has a predilection for my lymph nodes as it is keeping it away from my major organs! I thought this was a good way of looking at it.
I hope my experience is useful - do ask any questions. Take care. Love Steph xxxxx
SunshineSue
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Helen, sorry just seen all your latest news on another thread.  So sorry it's not what you had hoped.  Bad news is exhausting i find but you sound incredibly strong and certainly an inspiration to someone like me who has just started this'second' journey.  Speacial thoughts and hugs to you love sue x

SunshineSue
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Helen, how did it go today.  When do you find out?  Big hugs,  Sue

2catlady
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi,sue,I know it sounds strange but being ER + is good news as there are lots of treatments. I'm praying my new tumours are still ER today . I'm on letrozole too.
Good luck with your treatment,huge hugs,Helen xxxxxxx
SunshineSue
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Helen, saw my onc today I checked and i am Er positive 7/8  Her2 negative. I am on letrozole and have next scan in aug. Onc won't commit to any other treatment until after the next scan.  Thanks again love Sue x

2catlady
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi,Sue,your mets may still be Her+ so you may be put on herceptin ?or something else. I'm ER+ so not sure of the treatments for Her+.hopefully you get your treatment plan soon.
Huge hugs and take care,Helen xxxxxx
SunshineSue
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Helen

Dont know what stage the secondaries are will ask Oncologist. The original was HER positive? Glad to hear there are several options for treatment and will certainly look at the thread you suggested. Thank you so much for welcoming me and look forward to speaking soon.

Big hug

Sue x

SunshineSue
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Bev

 

Thank you so much for your encouraging words. Good luck with the Capecetabine and your Oncologist definately sounds more optimistic than mine! I'm so glad to have joined this forum as I thought I could deal with this on my own and I have been until the secondary lumps appeared so soon after chemo.  So thank you and look forward to talking soon.

Big hugs

Love

Sue x

Sam_BCC
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi SunshineSue

 

As well as the support you are receiving here you might find it useful to have a look at the information page on secondaries.  It gives details of the publications and information as well as the services and support availlable.  If you would like to have a look just use the link below:-

 

 http://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_cam...

 

Also if you would like to talk anything through do give the helpline a call on 0808 800 6000.  Here you can share your thoughts and concerns with someone who will offer you emotional support as well as practical information.  Lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator  

 

2catlady
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi,sue,so sorry you are joining us. I can't offer you any advice. Do you know what the status of secondaries are? If it's hormonal,Her+ etc? there are a lot of treatments out there and some ladies have been on cap chemo for years.
Unfortunately SBC can't be cured but it can often be controlled for many years we have a lovely lady on here into her 11th year.
We are a very friendly bunch so please feel free to jump into an ongoing thread ( a lot of us hang around the bone /lung mets& specific treatment threads) ask us anything we will always try to help.
Huge hugs,Helen xxxxxx
Bevlaar
Member

Re: Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hi Sue...so sorry to hear your news. I know how devastated you and your famiky must be. I was dx last month with secondaries in lung with 2 nodes...paratracheal and hilar. My primary was 9 yrs ago and I had another primary in tge same spot 5 yrs ago. I start my chemo...Capecetabine..in 10 days time. Ive been told 3 cycles to take me up to mid august then they'll scan again to check if responding. !My onc sounded a little bit more optimistic I think than yours! Some just dont have a way with words do they??

He told me that there are a lot of options to try and new drugs to treat metastases are coming out all the time. My bc nurse says a lot of oncologists are treating it more like a chronic disease now as ladies are living longer and managing it succesfully with treatment. There are plenty on here who are living proof of that.  Im sure you will be fine, There are probably a lot of lovely ladies on here in similar situation to you and they'll be along to give you advice and support too, as they have with me.  

Sending you a big hug ((((()))))

Love bev xxxx

 

 

 

SunshineSue
Member

Grade 3C now with Secondary Lymph Node Involvement looking for advice

Hello

I was diagnosed with Grade 3C last October and had 13 out of 15 lymph nodes infected. I had had a mammogram in July which was clear, so as you can imagine the news was a huge shock to me and my family. I had mastectomy with implant reconstruction in October 2013, followed by chemo (FEC-T). 6 weeks after the chemo finished in April, and just as I was due to start the radiotherapy, I felt a minute lump in my neck above the collarbone. The biopsy confirmed that the cancer was back after only 6 weeks. I then had a CT scan which showed that I had further enlarged lymph nodes in other armpit and left groin, these were also biopsied and confirmed as Secondary cancer.  I have now finished the radiotherapy for the original area and neck together with one single blast to the groin but nothing to the other armpit.  Has anyone else been through similar with the secondary lymph node involvement and could you let me know what course of treatment was suggested. My Oncologist now just looks really serious when we meet and says the cancer cannot be cured and I can only have a limited number chemo cycles. I am strong, determined and wlll fight this not just for me but for my 4 amazing kids and my wonderfully kind, patient and supportive partner.  Thank you I would really love to hear from you x