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Member
Posts: 2
Registered: ‎18-11-2017

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Good evening
I am new on the forum, please to meet all of you.
I was diagnosed first time primary end Dec 2004
recurrence in June 2013 and 2 weeks ago i.e
02 Nov 2017 diagnosed with lung mets.

I am a BRCA2 carrier and have an identical twin sister who lives in France.
I have had CT scans, bronchoscopy and VATS surgery on Tuesday 14 Nov.
So at moment waiting to see my oncologist next week to start treatment plan.
I must say..it is very hard for my family and friends
Member
Posts: 29
Registered: ‎08-07-2017

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

hi I am not much help as similar to you just been diagnosed with a small tumour and lost of nodules in my pleural lining (first cancer 2004) My original cancer was in half my lymph nodes so I feel extremely lucky to have had the las t 12 years . I think we have to trust that treatments have advanced so much and hopefully they can treat it. I keep saying cancer will eventually kill me but I am hoping for at leats ten years of manageing it. Any time is gratefully recieved. I have not had any further scans yet so it could well be in other places .I will face that when it comes. For now concentrate on wheat you do have a chance of treatment .good luck x

Member
Posts: 13
Registered: ‎20-07-2017

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Hi Temmuz, so sorry to hear about your diagnosis,it is scary I understand completely.  I have metastatic breast cancer, this is 4th time.  I started in 2008 with masectomy, radiation and chemo, then following year it went to my ovary so had another op, more chemo!! Then last year it showed in my adrenal gland and now i have spots on my liver, been for scan results today and more spots on my liver and tumours have increased,very scared.  I am now starting chemo next week,not looking forward to that as had chemo twice before.

 

Keep us in touch how you are going on, this is the first time i have been on here.

 

Take care,lots lovex

Community Champion
Posts: 8,517
Registered: ‎26-10-2015

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Hello ladies
I think for some ladies ( including me) the bone strengtheners do increase bone pain especially in the spine. I have denosumab every 6 weeks and do get more achy for a few days ...onc says it's healing pain so I accept that ..pop a painkiller and hope all is well.
Xxx
Member
Posts: 39
Registered: ‎26-06-2017

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Hi there im so sorry that you have been diagnosed with SBC. I am thw same. Two months ago was my first diagnosis and mention horrific back pain on and off for 2 years. Prob my job i was told. But now ibhave extenve skeletel mets. My kids in uni and im worried about them too. I am clinging onto my er pr positve her neg status. I have been to my local cancer counselling centre. Im now on ibrancre denosamab and aromasin. Just devestated and fearful of what is round the corner. Im hoping that will chane as many girls on here been about for a while. Hoping for a cure in my time. Thoughts with you and your family x
Member
Posts: 4
Registered: ‎29-06-2017

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Hello again ladies.Firstly thanks,thanks all of you for your replies.You really helped me for staying calm Smiley Happy Sorry I couldnt write here quite a while.
I would like to share the latest events.Finally we identified that my tumor is Her2(-).My onc told me it is good for me and my treatment.And she prescribed me only femara(letrozole) and zometa(zolendronic acid) last friday.She told me ı will have zometa once a month.She called me back next month.
It made me really happy since i dont have to have any chemos for now.ıt has been 3 days since I first take zometa injection but I am really suffering bone pain from my spine.I don't know how to cope with it.
By the way since 2 weeks I am having 3 different antianalgesic drugs for spinal pain.Last friday i had a blood test which ordered by my onc to have a baseline blood work before treatment.According to this test my liver enzymes are a little elevated.20 days before I have had another one and the enzymes were normal.My onc immediately referred me for a liver USG.Today ı had my liver usg end everything was okay.No evidence for a tumor.Onc told me these elevations are probably related with the drugs I used.I will retest my liver enzymes next week.I hope everything is gonna be alright.
Thank you for reading ladies,it is really nice to have you here.
Community Champion
Posts: 4,306
Registered: ‎01-05-2012

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

 
Community Champion
Posts: 4,306
Registered: ‎01-05-2012

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

[ Edited ]

Hello Temmuz, I had responded to you the other day, but I see it didn't  make it here. I had posted like Ramade That when  you have a long time between primary and secondry it us usually slow growing. This usually means you will be here quite awhile . My primary was in 1995 and my secondaries in lungs in 2005! I'm almost at 12 years! I wish you the best FF

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Member
Posts: 232
Registered: ‎30-03-2017

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Dear Temmuz, I feel for you, I know we all do. In your favour you went a long time between cancer so that is good, also you have been told it is not aggressive. Try to take one day at a time at the moment. There are lots of treatments, some work well, some not so well, and always new ones on the horizon. There are wonderful, kind and knowledgeable people on this site and you can learn such a lot here.

hugs to you xx

Member
Posts: 60
Registered: ‎04-06-2016

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

I am so sorry you are in this situation. I was diagnosed with primary breast cancer in July 2012 and with lung mets in February 2013. I have been on chemo since that time which has been largely doable. I am active and walk a lot with my dog (Molly). My sons were 14 and 11, they are now almost 20 and almost 17. I am determined to see them grow up. You will feel better once a treatment plan is in place, sending lots of love xxx
Community Champion
Posts: 8,517
Registered: ‎26-10-2015

Re: Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Hello temmuz
Welcome to the forum ..I'm sorry you didn't get any replies but its some times quiet at the weekend's as everyone is out and about running marathons and bungee jumping ..ha ha.
From all the info you have given ..somehow I don't think you are in the uk as we don't get so much detail.
It's a scary time ..we all feel like you but we have ladies here living with cancer for many many years ...we have funny face who is in the US ..she has been living with secondaries for over ten years. If you are her2 + you will have the option of herceptin which is a good treatment .
I hope other ladies come forward here to support you too but in the meantime welcome to a forum where we are real people .
Xxx
Member
Posts: 4
Registered: ‎29-06-2017

Devastated :( Just diagnosed with SBC with lung and bone mets,need help :(

Hi ladies! Actually I am really sorry to write this post but also happy to find a community of us here.
I had my primary breast cancer in 2006.It was stage 2 and no mets or lymph node involvement.I was cured with radical mastechtomy,chemo and radiotherapy.Everything was well.At first I had controls per 3 months,then 6 months and last five years they were per a year.Everything was well.
In September 2015 my tests showed elevation of CEA.My onc immediately arrange a PET/CT scan for me.The results were clear.Than I kept being tested for my tumor markers every month.3 months later CEA was still elevating.My onc wanted another PET/CT scan and nothing had been found too.
Because my son was a 4th grade medical student at university,he wanted to check my tumor markers periodically.During this period with my onc's advice, I had 2 colonoscopies,1 endoscopy,1 complete CT and 1 pelvic MRI.NOTHİNG,nothing was there.Because my son was too worried about situation we never gave up checking my body.But this time period was a really challenging and destructive for all of us' psychologies.Even my onc started to think there is nothing malignant in my body since I had 'zero' symptoms.We decided to having TM tests for every 3-4 months not for every.
Finally at the beginning of this June(2017) my CEA level was extremely elevated with a moderately elevation of CA-125.(I just have a back pain for 3 weeks) I immediately had a PET/CT and that was it.I had bright spots in my thoracal lymph nodes,my lung(lots of milimetrical nodules),and my spine(especially L4-L5).And also there is a minimal pleural effusion in my left lung.I had a chest biopsy and the result was Secondary breast cancer.
According to pathology results my tumors situation was:
Estrogen reseptors:%100 (+)
Progesterone reseptors:/20 (+)
Proliferation index:%30(my onc told me this shows my tumor is not an aggresive one)

I am waiting for HER2 results before my treatment.
I just feel myself awful.I feel it is in every site of my body and I feel like it is late for me to recover.I have a daughter of 14 and a son of 23 who is a 6th grade medical student.
I am afraid ladies,afraid of leaving my children alone Smiley Sad(