Progression Diagnosis

Hi Linda,

I remember you from the Womb group.

I am sorry to hear that you may have some progression to your lungs from your original endometrial cancer. I can understand why you feel angry that they have not explained more clearly about what they were doing/thinking of and the likely diagnosis. If talking it through would help, then perhaps give the Support Line a call tomorrow.

To have that amount of fluid needing to be drained must have been really uncomfortable. 

It sounds like you should be seen quickly by the gynae team and hopefully this will give you a chance to ask questions and find out the next steps. I can understand your worry about your previous experience of chemo and I had a look and found the following. It has some info about the other possible treatments. It may also help as a bit of background information to help prepare any questions for when you see your consultant again.

Secondary lung cancer | Macmillan Cancer Support

I hope that you do not have to wait too long to hear from the gynae MDT, but in the meantime we are here if you need us. 

Jane

Thank you Jane, I remember you too and all the helpful advice you gave.

I will ring the support line and talk it through with them as they may know more about a timeliness.

The gynae met meet on a Wednesday morning so I'm hopeful that I will be discussed this week.

I already have so many questions for the consultant and I know that's always something that you recommend.

Knowing more about cancer from my previous experience I am especially concerned and the link you have provided will certainly help.

Thank you Jane, you really are a true champion and so helpful, I'm grateful to you.

Linda 

Hi Linda so sorry to hear what you are going through - I hope you get to see the gynae team soon; I have found it quite difficult with the lung and gynae teams not really co-ordinating as much as I would like, but was told the lung team decides treatment rather than gynae but not sure if that’s really the case. I have stage 1b grade 1 womb cancer (hysterectomy this sept but still waiting brachytherapy until the lung people are happy) and have possible multiple lung mets and am scheduled for a lung resection in the next few weeks. I also got a letter last week announcing my diagnosis as lung mets when no one had confirmed it to me (and I understand it may still be lung primary or something else until the op has shown otherwise). I think the letters sometimes are written very quickly and they forget we are reading them!

Thank you Tangle 123, my hysterectomy was July 2023 and after the unsuccessful attempt at chemo I too had brachy which was the easiest treatment for me.  I was Stage 1 grade 3 but had P53 gene which is aggressive.  Although grade 3 i was consistently told that it had not spread from the endometrium.

From what I know and have read on here that it is secondary progression into the left lung.  I guess I'm just worried about the possibility of chemotherapy and how it will affect me this time round.

I hope you get everything sorted and a proper treatment plan put in place before too long. 

Do you know if there's a specific reason why the won't give the brachytherapy now or is it that whatever treatment they give you for the lung cancer may wipe out anything that could still be there?

Best of luck to you and thanks again for your reply.

Linda

Hi Linda - yes I think they think if I need chemo, then the brachy was not needed as the chemo will take care of things  i am not sure I agree (but what do I know) so will prob get a second opinion - I think it will take a week to get the results of the resection and their view is tha the largest nodule and poss two will be removed at the same time so may well deal with the cancer fully as well 

An update of my lung cancer.  I felt fine for a few days after I got home, the respiratory consultant phoned on Thursday to tell me it is a positive outcome for cancer.  He was worried by my breathing and had me admitted to hospital that night.

On Friday I was given a larger drain which would drain 500mls of fluid every 2 hours, this was OK for the first 2 times but on the third I had horrendous pain so it changed to every 4 hours.

The consultant has said I have 2 small nodules on my right lung and a larger piece on my left lung with nodules all over it.  He also said that he had emailed the gynae consultant on Thursday to advise the results and to let her know I'm in hospital for a few days.  I'm hoping she might come and see me with a rough plan for dealing with the cancer.

I was worried about the Endometrial Cancer and my mental health but I came through it and told myself I didn't need anything that was removed .  Unfortunately I cannot think like that now - I need my lungsto live so I'm genuinely scared for what's to come.

Id love if someone who has experienced lung cancer to advise what their treatment involved so I could focus on that rather than think I'm going to lose my lungs and need a transplant.

I'm going to call the helpline again tomorrow for someone to talk to about my fears. But I would really appreciate it if someone would advise of their experience.

Thanks

Linda

Hi Linda

Am sorry to hear that you have been unwell in hospital. It's natural to wonder what is ahead and hopefully once you have some sort of treatment plan ahead, things will feel more in control and it is something to focus on. 

There is another forum on here that maybe helpful as well as this one. 

(+) Secondary lung cancer forum | Macmillan Online Community

There is also some more general information here, including some of the treatments you may be offered.

Secondary lung cancer | Macmillan Cancer Support

Jane

Thank you Jane, that information has been useful.

Hi Linda, so sorry you are going through this; I have spent a lot of time recently looking for positive outcomes and it does seem that lung cancer treatment is a lot more hopeful than a few years ago. It sounds like your nodes are as small as mine - have they actually done a biopsy as yet? I saw a consultant last week for my womb cancer and he said that it is still not clear that they are Mets, but the lung people will assume they are at this point until the wedge resection confirms or otherwise. If I didn’t have a womb cancer diagnosis they would prob have simply monitored at this point.

 I have been reassured that there are many treatment options, and the wedge resection may actually be all I need for now - but otherwise they will start with a hormone treatment and scan/monitor regime. Further operations and radiation are also very possible, as well as immunotherapy and chemo. 

I prob sound calmer than I am really but I take hope from them finding the nodes early; but yes it’s scarey. Hopefully others with more further along stories can will come along to reassure you shortly. But sounds like you are in the right place with a proactive team x

Thank you Tangle 123, I have yet to see my Gynae consultant and hope she might come up and see me tomorrow as I may be getting home.  

There are only 2 small nodules on the right lung with significantly more on the left.  The respiratory consultant had this weekend off so he will catch up with me tomorrow.  I haven't had any biopsy done, all I've had are chest xrays, blood tests and a CT Scan so I'm still very much at the beginning of this roller coaster.  I've got a heap of questions written done for the Gynae consultant so the sooner I see her the better.

I'm wondering do they give you a general anesthetic for the biopsy or is it just a local? My experience with hysteroscopy was traumatic and I never want to feel pain like that again.  I know it's not at all similar but I've had excruciating pain when they open the chest drain and had to be given oxygen to help me breathe.

He has mentioned using sterilised talcum powder to prevent the cancer from spreading quickly but this just a temporary solution and I'll probably have a long term chest drain too.

I have read some positives on lung cancer and survival is pretty high but I can't go through the chemo again after such a rare reaction.

Jane sent me a couple of links for information and I found them very helpful.

I'll update again when I know what's happening.  Thank you for your support, it's much appreciated.

I do hope they work out a plan for you soon so that you can get the treatment to cure your cancer.