Hi everyone, Yesterday I went for my results, although I knew I had cancer I was shocked to be told it was also in my lung, Lung mets,
I am totally shattered,good news was my bone scan was clear and my liver is healthy. I was told I will be having treatment quicker now and also Herceptin ,Does anyone have similar situation , The inflammatory aspect of my BC is rare and I dont know what to think at the moment,
Thanks for listening as always. xx
Jean
Hi Jean
I just wanted to send you a hug this morning. You must be very shocked. I hope some of the secondaries ladies will be along soon to help you with information and their experiences. Good luck with your treatment.
Take care Debx
Hi Jean
I am sorry to read about your new diagnosis and wanted to point you in the direction of some support, you can access secondary support and information via this link:
breastcancercare.org.uk/breast-cancer-breast-health/secondary-breast-cancer/
Please call the helpline too for further support Jean
Take care
Lucy
Hi Jean
So sorry to hear that you have lung mets and, although I don’t have experience of these mets (mine are in my bones) or IBC, I do know what it’s like to get a secondary dx right out of the blue. I therefore do know what a horrible, frightening place you are in right now and hope that when you get your treatment plan that you can feel more in control - which is when I started to feel more able to cope. Wishing you all the best and that someone else comes along with some advice or experience that can help you.
Nicky x
Hi Tillybob,
I am sorry to hear about your diagnosis. It takes a while to your head around it. I have bone and liver mets. I was diagnosed in 2008. I have been on herceptin since diagnosis. The herceptin has worked well and I have remained symptom free.
I have a bone scan next week so this should provide a better picture of whats going on in my bones. Its the first bone scan for 2.5 years.
I had an MRI scan on my liver about a year ago and the lesion was no longer visible.
Are you having chemo and herceptin at the same time?
Alex
Hi Alex, yes I think I am having Herceptin and chemo together, but have to have heart scan first ,that should be next week, all being well I have my 1st meeting with the ONC on 8th march and treatment can be started as soon as possible, was told I would be on Herceptin for forseeable future,life if needed.Hope it does what it says on the tin!
Good luck with your scan,
keep in touch
Jean x
Hi Jean
Having the herceptin with the chemo is the most effective option. I had it together and it worked well for me. My tumour markers were 219 before treatment and are now 15. They continued to drop a bit whilst on herceptin alone. I also take tamoxifen as I am slightly ER pos as well.
The treatment is quite long when you have both. Now that I am on herceptin only I have it over half an hour. I have it every 3 weeks. It does not really interfere with my life that much. I usually have treatment in the afternoon so I go to work in the morning. The herceptin has not given me any side effects.
Good luck with the treatment lets hope it gives it a good zap.
Alex
Hi Tillybob
Big hugs! I remember feeling similar 2 yrs ago (dx almost 2yrs to the day with IBC). I was told I had a sinister spot on my liver at my first CT scan, my onc wasn’t sure what it was, funny I only found out on Wednesday at my last check up that the doc that reads the scans thought it was spread. Started chemo with herceptin. I’ve had a mastectomy and recon since (still got a bit of refining to do but its wonderful!). All scans have been clear since. Will be on herceptin for the forseable future. Every three weeks a nurse from Health Care at Home comes to my home and in all it takes two hours. Same nurse and she has become a really good friend. I have check up and scan every 6 months. Had my last one on Wednesday and everything is fine infact I feel better and fitter now than I did before diagnosis.
Good luck with your treatment - you will find a lot of support on here. Also thanks for posting and showing me that there are others out there on herceptin indefinately and doing well as I always feel a bit wobbly after my check ups!!
Any questions please feel free to ask or PM me.
Mandyxxxxxx
Hi Mandy, thanks for your reply, I was beginning to think I was the only one having Herceptin for life, other posts suggest its only short term,you have given me something very precious - hope. Thankyou,
hugs
jean xx