Hello all ,
I hope everyone is doing OK , I just wanted to write an update .
A bit of back ground first , I was diagnosed with 1b1 adenocarcinoma in 2013 , treatment was radical hysterectomy but ovaries were left in so that i could have a natural menopause. Then 2015 i had a recurrence to the ovary , i went on to have surgery to remove the ovary followed by 5 weeks chemo
( Cisplatin) and radiotherapy. I have been NED up to now … where it all starts again !!
I was sent for a CT scan in November to investigate some back pain , however the CT incidentally found a 20 mm lung nodule. Now apparently this nodule was on my last CT one year ago measuring 7mm but nobody told me about it … ( Nice guidelines state lung nodules 5mm-8mm need monitoring)
Anyway i have now been to see a thoracic consultant who is going to try and remove the nodule ( all being well pre op tests are OK) the nodule has grown quite close to the heart and i was given the option " to do nothing"
Apparently , according to my gynea consultant this scenario is a rarity and there are no clinical trials to guide the management of this and that medical literature is very limited.
Outcome of any treatments i may get are unknown and I’ve been told i need to carefully consider all of the risks associated with any treatments . The operation is a risk , but i simply don’t feel i can leave it there to grow and spread and " do nothing" i feel i have to fight this and try to get rid of it again .
Its a difficult situation , i have asked to join the advanced forum but i wondered if anybody has had or heard of any cases like this before and had lung surgery to remove lung mets.
i am going to try and reach out far and wide in an attempt to be armed with any information that might help me.
I am feeling a little angry this could of been managed better one year ago when it was first identified , the thoracic consultant admitted this certainly would not of been left as long as this had it been acted on 1 year ago.
Anyway if anybody has any advice at all they can give or have any knowledge of successfully treated lung mets , surgically or otherwise i would be very very grateful.
Take care and have a good Christmas.
Didn’t want to read and not reply. I don’t have any advice and haven’t been in a similar situation but I’m sending love and hope someone who can help will be in touch soon. Xx
Hi, I know that there will be many others to share their own succes stories but I know a woman from a Facebook group in my country who had surgery for lung nodules and then had chemo and this was nearly 10 years ago. This was when there wasn’t immunotherapy in my country at least. Just an example.
Prayers and healing hugs
I’m thankful not to know anything about recurrence/lung mets so far. Are you in the UK? After doing a lot of reading after my diagnosis and treatment, I decided if my cancer ever came back I would seriously look into The Care Oncology Protocol (alongside treatment). If you haven’t heard of them before, maybe take a look. You’re one tough cookie Greeni, you’ve got this. Sending positive healing vibes. Xx Maria
I remember you well from when I was on the forum a lot back in 2016 and I remember reading lots of your comments.
I don’t want to read and run, just want to send you some cyber hugs.
If there is one thing I remember about you it’s that you are on strong cookie.
You’ll face this head on I’m sure.
I have no doubt you will hear of other women with lung Mets who have recovered.
Please check in here anytime you need.
I remember you, you helped me as I had a similar story to you. Originally 1B1 spread to both ovaries. Currently doing ok.
Treatment for lung mets or any mets would be carbo/taxol 6 sessions every 3 weeks? Why are they deciding to operate on you? I had the carbo/taxol after the removal of both ovaries. Are they sure its cancerous? I had cysts in my pelvis for 2 years now and they still cant tell me definitely if they are cancer or not even after about 8 MRIS, 1 CT and 2 PET scans!
Sending you lots of love
Thank you for your reply , we do have similar stories. I wondered, are you in the UK ? After my 1st recurrence to the ovary , i had 5 weeks Cisplatin along with radiotherapy, that was in 2015 and i’ve done well up until now . I was kind of hoping after 7 years i could put all of this behind me.
Following my most recent CT scan a Lung cancer consultant stated " Likely lung mets" I then had a PET scan and went to see a Thoracic consultant , who was in agreement from looking at both the scans " realistically this is Lung metastases" however i was told there is a small chance it could be a primary lung cancer " But unlikely" apparently they can gauge if the lung nodule is cancerous by the size , growth rate and shape. A part of me is hoping by some miracle when its taken out they are wrong .
From looking at the scans though no other spread has been identified.
I think they are operating because its quite close to the heart but i wasn’t given the option of Chemotherapy as a first line of any treatment. It was either " we can simply do nothing or take it out" well doing nothing was not an option for me !
My surgery is planned for next week , so will know more after the operation.
I will try to pop on here and give another update.
Have a lovely Christmas xx
Good luck for ur operation. Keeping everything crossed for you xx
Yeah I’m based in Wales.
I’ve joined the advanced site of the forum as when I was originally diagnosed I was told I was incurable with the spread to my ovaries. My lymph nodes were clear (taken out with hysterectomy) so it was spread through my blood.
Its a bit of a werid one the spread to ovaries as there are loads of conflicting medical views as its not a common spead.
On the advanced site with lung mets, the main treatment is the carbo/taxol. I think thats the first line of treatment for any mets? Are you in the UK?
I hope your surgery goes well. Please give us an update. I have a lot of medical articles about ovarian spread cerival cancer if you are interested i can email them to you.
Yes I am in the UK , Midlands area.
I was told spread to the ovaries is “super rare” , one doctor once said to me “ my dear that’s impossible” to which i Said well it can’t be because it happened to me ! At the time i remember waiting a couple weeks for results as to if it were a CC spread or a new ovarian cancer .
I’ll PM you my email address , I’d be really interested in those articles . Thank you .
I am pondering over the fact the thoracic consultant didn’t offer chemo as a first line treatment, I’m assuming he offered the surgery because it’s close to the heart ?? but then Ive now thought, well although they all seem really sure it’s lung Mets from the scans , but what if they are wrong ? ( could be me being over hopeful here) I’m thinking would they / could they offer me chemotherapy until they know 100% the nodule is cancerous ?? I just don’t know my mind is working overtime !
I’m not really sure on any of this or how lung Mets is confirmed / has been confirmed with other patients , has that been through scans alone ?
Thank you so much for your reply , I’m truly grateful , I will try to give an update after the operation.
So sorry you find yourself in this position again. My secondary diagnosis of multiple lung mets was 18 months ago after a year of remission from 2B adenocarcinoma.
My lung mets were diagnosed from a PET scan & MRI although I believe the PET was key in picking it up. I had multiple ‘very small’ nodules and one lymph node. There was no option for surgery (or biopsy) and the only treatment on offer to me was the usual chemo mix of carbo/taxol/avastin. I had a complete response from 5 cycles and I’m on 3 weekly maintenance Bevacizumab (avastin) and continue to feel very well.
It may be that surgery is available because there is only a single tumour, or a possible plan to follow with chemo? If they sound unsure about it, would it be an idea to have a second opinion, eg from The Royal Marsden?
Thank you about the 2nd opinion suggestion, I have now had one with a lovely consultant at the Royal Marsden , she was amazing and very knowledgeable. She definitely gave a slightly different view on my situation and gave me back my hope !!! I’ll be seeing her again for another follow up.
Thank you xXx
Could I ask how you were able to have ongoing Avastin? It’s only given for a set period at my hospital, usually 6 cycles, and it’s always given with chemotherapy. I had 5 cycles out of 6 because they stopped the Avastin (I think you know that) but prior to it being stopped they discussed continuing my chemo and the Avastin for another 3 cycles so long as it started within 6 weeks of my 6th cycle. They emphasised that it had to be given with chemo. It just isn’t given on its own on an ongoing basis. Are you living in the UK?
That’s lovely to hear - were her initials MN by any chance? Good luck and keep us posted! x