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Posted

Hi everyone, so a month ago we thought my Dad had a Chest infection, (he's 65, always been healthy and active) as he was losing weight, Coughing a lot etc. but in the space of a month, we have been told that not only has he got advanced prostate Cancer that has spread to his lungs (secondary), he also has primary lung Cancer as well - an x ray showed a shadow on his lungs, and a Ct scan shows small masses in the lower right lung, and a large mass in the top of his right lung. My Dad is terrified, as we all are. Tomorrow is the first lung specialist appointment, and I am after advice on what this appointment will entail, what questions will they ask, what questions do we need to ask etc. My Dad is my mums Carer and is worried about what the future holds, and what the next steps are. We live in Kent in England. I have joined many online forums on both prostate and lung Cancer, but have yet to speak to anyone who is fighting both. Any advice is much appreciated, thank you.   

Posted

Cassie,

 

I'd be terrified!

 

To clarify, your father has prostate cancer that metastasized to his lung and also lung cancer, both confirmed by CT scan.  I've not had to fight both.  One was enough.  One complexity if he was being treated in the US would be which medical speciality takes the lead.  Normally, a urologist treats prostate cancer while a medical oncologist treats lung cancer.  A radiation oncologist treats both.  You mentioned lung specialist as his next appointment and that may be well but if he has tumors in both lungs, then he'll likely need chemotherapy and it may be a complicated regime of chemotherapy.  That would suggest you gain an appointment with a medical oncologist as quickly as possible.

 

The challenge if he has bilateral tumors of two different types is to find a recipe of chemotherapy that attacks both prostate and lung cancer.  Has he had a biopsy yet?  By that I mean, has his lung cancer been identified as to type (small cell, non small cell etc.).  Here is a resource that discusses types of lung cancer - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer

 

I'm certainly not an expert on the UK's medical system but fortunately Eric Byrne, one of our moderators is.  I'll message Eric and see if he has ideas for you navigating the UK medical system with the complexity of your dad's problems.

 

Stay the course.   

 

Tom

Posted

Thank you for your reply Tom, yes both diagnosed by ct. not sure if mets in bones as my dad refused bone scan as was too nervous he would be claustrophobic, but is getting aching calfs and joint pains which could suggest spread is in place. The first appointment we went to was with the urologist who clinically diagnosed advanced pc, determined by DRE, and the very high psa level of 200 - also a classic indicator of metastasis. A chest ct then showed the smaller and one large masses in the right lung. I'm assuming we will be arranging to go back to the hospital for the biopsy after tomorrow's appointment? To which I ask another question - would it be possible to ask for my dad to have a general anaesthetic for the biopsy? I understand from the research I've been doing that one method of biopsy bronchoscopy is quite a quick procedure but I know for a fact my dad would freak and have a panic attack as he's so nervous. Is it safe for someone with lc, a chronic cough and breathlessness from the lc meds he's taking (bicalmutamide and Lupron shots) to have a ga? I feel like we're going in blind, there's been no mention of an oncologist or specialist nurse. This is the first appointment for the lc since finding out the results of the ct from our gp (who was unable to tell us anything other than she would arrange an urgent lung specialist appointment). I'm so worried, the waiting for answers and treatment options feels more painful than the diagnosis itself.

Thank you for your help, have felt so lost since finding out.

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Posted

Hi Cassie,

                Welcome to LCSC,thank you Tom for my introduction,I am so in awe of the support and advice you have provided to so many correspondants to this forum.Cassie yes I am a Brit,Scot to be more precise,I am so sorry to read of your fathers current situation.My dx was a cancerous tumour in the airway to my upper right lung.Here in the UK,following the completion of all tests recommended by your fathers oncologist they are then collated and brought to a multi-disciplinary team meeting of all the medical practitioners that will be involved in developing the most effective treatment plan for your father.In my case as the treatment plan was underway,my responses to the treatments were carefully monitored and refinements were made to it.I went through Neo-adjuvant chemotherapy a combination of cisplatin and vinorelbine this was aimed at reducing the size of the tumour in my airway to make the prospect of surgery possible,after two cycles,I was sent for a further CT scan,my oncologists feedback to me on the CT scan,was that he had never seen such shrinkage in a tumour before and that I was prime candidate for surgery in January 2009.I sailed through my surgery with only minor discomfort ( although I am a Scot I am no braveheart).

     I can well understand your fathers reaction to his dx,it is a scary time for him and his loved ones,I found it took me some time to come to terms with my diagnosis,my sleep patterns were severly disrupted my jangled nerves seen to that.I discussed this with my GP and he prescribed sleeping pills and a anti-depressent,I found these drugs did really support me through that period immeadiately following my dx and after a short period of time I stopped taking them.

         More practical advice I can suggest for your father,is to prepare for any appointments in advance with oncologists and other professionals treating your father,that is to use a note pad to write down any questions or issues you would want a fuller explaination to,also write into this notepad the responses you receive from the consultants during your meeting with them.

     Take one day at a time, a saying I read some time ago which helped me was "Worry is like sitting in a rocking chair,it gives you something to do but it dos'nt get you anywhere"

       Another piece of advice is look after yourself,it is so easy to become overwhelmed with all thats going on with your father,you forget your own needs.If you do feel stressed look for support from family and friends.

       Please do pass onto your father my best wishes for the success of his treatments,do keep in touch to let us know how he is doing.

Posted

I will do Eric, and thank you so much, I am so pleased to have found this forum! I will keep you all updated as the journey proceeds, and no doubt I will be asking more and more questions as the time goes on.

I honestly cannot thank you all enough,

Kindest regards,

Cassie

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Posted

Cassie,

 

I've had perhaps a dozen bronchoscopy procedures, both flexible and rigid.  I've had general anesthesia for both types.  I can't imagine having one without anesthesia.

 

Stay the course.

 

Tom

Posted

Dear Tom,

That is reassuring news! I was worried my dad would only be offered a local!

Thank you very much.

Kind regards,

Cassie

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Posted

581bab04e2b8139bc5f71aa91ca2bc18.jpg

Could anyone explain this extract from my Dad's letter from his lung specialist for me? Not sure of some of the terms or the sizing of the masses, thank you.

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Posted

Cassie,

I'm not a radiologist nor a medical doctor of any type, so keep that in mind as I offer my opinion (likely wrong). I'm not sure about the significance of the lymph node discussion but the report of scaring on the left node got my attention. This can result from TB or asbestos and several other illnesses. Not sure it is connected to cancer.

But, if it was my report, I'd put the most significance on the middle sentence. The doc thinks a PET scan and a CT guided biopsy is needed. So more diagnostics are needed to determine if cancer is present or if it is, what type and stage.

You already know what the last sentence means.

Stay the course,

Tom

Posted

Thank you Tom. My Dad had the PET scan yesterday, so the next step is the biopsy.

Kind Regards,

Cassie

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