PET Scan results.......

[Eriksendi]

So one year after my debulking surgery and 9 months after finishing chemo, it now looks as if I have lung cancer. My 1.4 cm lesion ‘lit up’ so now I’m referred to a lung surgeon. Abdomen clear and rest of body clear, ca125 11. I was told it’s just unlucky!!! I hate this bastard disease. Devastated is not the word and as you can guess extremely angry as well. I feel so much for my poor husband and son who have been so supportive as they see me fall apart for a second time.

[Coldethyl]

So sorry to read this - is it a new lung primary or a metastase or will only a biopsy tell you this? I follow a lady with bowel cancer who has had successful lung ablation surgery for lung mets at Royal Marsden so fingers crossed surgical options are available -thinking of you x

[coksd in reply to Coldethyl]

sorry to hear this did you have any symptoms for the lung cancer this disease is so frightening I am sure your team will come up with a treatment plan I know it doesn't ease the pain & shock

[Eriksendi in reply to coksd]

No symptoms it just appeared on a routine ct scan. However have suffered with breathlessness since diagnosis although all ct’s/X-rays have beenclear for over a year

[Eriksendi in reply to Coldethyl]

Only the biopsy will tell. They think it is a new primary. They have referred me to a lung surgeon. Just waiting for appt.

[Coldethyl in reply to Eriksendi]

Everything crossed that the lung team come up with a good plan for you- I had a synchrous uterine primary on diagnosis and a lady I know on another forum had kidney tumour at same time as Breast c - it all seems very unfair x

[Cropcrop]

I’m so sorry you’ve got a new area of disease, you’re right to call this disease a bastard because it really is and a totally indiscriminate one too, as if you’ve not dealt with enough already and to say you’re unlucky is an understatement. I suppose the upside, if there ever is one, is that because you’re checked regularly they may have found this really early and it can be dealt with urgently. You still have our undying support regardless of the cancer type, it may be useful to look at the lung cancer forum on health unlocked too, if they’re anywhere near as good as us lot you’ll have double support, feel free to rant and rage as much as you want lovely it is totally allowed and possibly the law. Lots of love and hugs of encouragement lovely ❤️Xx a Jane

[Kryssy]

This is so unfair. Sending love and a big hug and hope it can be dealt with quickly and you can return to a normal life. xxxx

[Eriksendi in reply to Kryssy]

Thank you x x

[Manchesterlady]

So very sorry to hear this , I do hope that you can get an early appointment with your doctors , the waiting will be awful for you , sending you love and prayers. Are you at the Christie hospital?xxx

[Eriksendi in reply to Manchesterlady]

No at Royal Surrey - looks like I will be referred to St. George’s Tooting for lungs

[BeeWild]

Oh lovely that is just the pits and this disease is totally a bastard! You’re so allowed to be furious, angry, upset and devastated all rolled into one!

Fingers crossed the lung specialists can sort this out for you and quickly xx

I know how you feel about you’re family, it’s hard to see them having to be dragged along this path with us but they wouldn’t want to be anywhere else and just like you they will pull up their brave pants and get through it again xx

I’m so sorry this has happened but you can do this xx

Massive hugs

Bev xx

[Jessica-DianeB]

I am very sorry to hear this. I’m not sure where you find the strength, but it will come, when you have a plan. We are all hear to listen, sending prayers xxxxxxxxx

[Hidden]

So sorry that you have a recurrence and there is a new radiotherapy for Lung Cancer I hope its available in your hospital, it is extremely targeted but is one for the future

[Roobarb1]

Hi there, I have something that sounds a wee bit similar - I’m still having treatment for ovarian cancer, just finishing chemo. I am stage 1c and there was no trace of cancer after my debulking. I had a 7mm node on my lung that showed up on my original ct scan and was told not to worry about it as loads of folk have benign nodules.

However after my 3rd chemo it had halved in size, so they now think it is a separate lung cancer (it could be ovarian that has “jumped “ but apparently this is very rare).

I could not believe I have been unlucky to have 2 different cancers....however, my oncologist says it can happen.

I guess you are still reeling from being told this; however as Suzuki says there is radiotherapy for small lung nodules like this, think it’s called SABRE or something, it is extremely focused and I think successful, so hopefully you will be offered this when you see your consultant. I’ve been told I will be watch and wait, to see what happens but if it starts growing quickly then I will be given this treatment. It means I get 3 monthly CT scans which I would not get for my OC monitoring.

I’m trying (a wee bit unsuccessfully admittedly) to treat it as a good thing, without the OC diagnosis, I would not have had my lung nodule picked up so fast - as we know, the earlier they find these things the more successful the treatment .

Wishing you all the very best for the future, and I hope your appointment with the lung specialist goes well xxxx

[Lyndy]

That’s just sh*t....no wonder you are raging. So unfair! Sending an enormous hug xx

[bsooner]

I was also told I might have lung cancer. They went in and did a biopsy and it turned out to be sarcoidosis. It has done some damage to my lungs but is in remission. Never knew I had it. They check it every year now with a CT scan when they scan for the ovarian cancer. I have a friend that also was told looks like stage 4 lung cancer and it also turned out to be sarcoidosis.

[Eriksendi in reply to bsooner]

Thank you - I'm not sure what that is I'll have to have a read up on the Internet x

[Howick01]

A friend of mine was treated successfully for lung cancer more than 5years ago now.

The treatment now is much improved if caught in time.

Stay positive and I hope all goes well for you xxx

[Suzanne333]

So sorry to hear that but keep positive. There are treatments and plans. Xxx

[Eriksendi in reply to Suzanne333]

Hope you are doing a little bit better Suzanne. Have you heard from the gastro team yet?

[tara108]

Thinking of you and so sorry you have to deal with this on top of everything else. Really hoping it can be dealt with quickly for you. Sending hugs from Australia

[Katiebairdie]

Hello. All this worry probably makes you depressed which is upsetting for you and your family. Sending you all my best wishes for a speedy diagnosis and recovery.

Kathy x

[Maxjor]

Just want to say sorry to read what you are going through. Unbelievable, really--probably a silver lining they do the routine scans as it seems to be caught early. Even though its not known yet if its primary, my aunt had lung cancer about 8 years ago---they told her not good (meaning much more than what they found with you)--she only did 3 of 6 rounds of chemo and has been cancer free ever since. I think all treatments have made great advances in recent years and I am so hopeful for you. oxoxox

[Eriksendi in reply to Maxjor]

Thank you. I hope that they can deal with it x

[ZenaJ]

I'm really sorry to hear this, it is devastating news. I really feel for you. You sound like a fighter so I'm sure you'll get through this the same way as before. Let's hope they've discovered it early to give you the best chance possible. It seems like they have as you had no symptoms.

Best wishes, Zena xx

[Ge0rg1na]

This must have been such a shock for you but I hope the many positive responses on here help you deal with the waiting. It sounds like you live near several centres of excellence so that's encouraging too. You will find the strength to deal with this, but the shock must have been enormous. Gina xx

[Yoshbosh]

That must be such a blow, Eriksendi 😔 I hope you referral comes through quickly and you can get some answers soon.

Thinking of you, Vicki x

[yo207]

Hi Eriksendi. First, I am so sorry to hear your news. Second, go ahead and be angry. You should be. This disease is a ...ing curse. I am talking from experience. My first recurrence was in my spleen which was removed. I was told that sometimes the peritoneal chemo doesn’t reach up to where the spleen is located. Just went through third recurrence. It came back in my pelvic lymph area, near the liver and mesentary abdomen. I had to tell my family and friends again which sucked. I am on avastin now which I found out by accident will be the “norm” for the rest of my life however long that may be. I’m other words I am never going to be DONE with chemo. Today I am cancer free for which I am thankful. However, in the back of my mind I am wondering how much time I have left, what I should do before it gets really bad and sometimes I just say what’s the point? I don’t mean to be negative. I am trying to live my life to the fullest. Somehow whether by way of DNA, environmental issues or just bad luck, we were all dealt a bad hand. God bless you. I hope you get through this and have a long period of remission.

[Eriksendi in reply to yo207]

Thank you for replying, everything you say resonates with me. I just feel I have been dealt the short straw. Everyone in my family has lived really long , healthy lives so how the ...k did I end up with this. I, too, wonder constantly how long I have left. I wanted to see my son married, have grand children etc, but this bloody disease has taken that away from me. I’m only just 60, it’s far too young to be thinking thoughts like this. I know it has taken many others sooner and in much worse positions with younger children and for that I am grateful but my mum was 98 when she died it’s like another lifetime again that I am robbed of.

Sorry to everyone else who are also in bad places I really do feel for you but the anger is not dissipating yet x x x

[lorraine71-Australia]

Hi Love, I'm sorry you need to go through this againe, as all the ladies have said it is unfair but we know that this beast is just that..

And yes it's is hard on our family , I've been on here now for near 4 years with up and downs and it is taking a toll on my family but they are sportive.

My oncologist found on my last scan a spot on my adrenal gland witch is purposes to be rare she said it has metastase.

I hope your team has a plain that will give you good results ..

Take care Lorraine xx 💙💙