Secondary cancer

Hi Red,

Thank you so much for talking to me about your experience, it does help, a lot! I knew, deep down, that there was a possibility of anal cancer spreading but after my MRI in May I had no bad news, actually, I had nothing, which seems to be the way my team operate now that it's 16 months! I had reason to see a locum GP in June and she looked at my scan and told me the tumour had shrunk considerably and there was no sign of spreading! But when I spoke to my own GP last Monday, he insisted I'd never had a scan since November, so I think that's what she's been looking at! However, the blood tests show abnormal liver function, not for the first time! Last time I had the camera down and it showed a small hernia but not the gall stones the GP suspected! This time I have to have an Ultrasound scan, didn't even have one of those when my kids were on the way, I'm so ancient! I'm so nervous about what they will find! It's on 8th September and we're due to go to London on 15th! I really am trying to keep wearing my big girl pants but I think the elastic is loose!

I'm so happy you've had such great news Red, you really deserve it! I'll NEVER go on Google again, and I really hope no-one else does!

Best Wishes and many thanks,

Moira x

Tylenol is paracetamol in the UK.  Ibuprofen is Advil or Motrin in the States.  Both can have very serious consequences if taken to excess.  The recommended dose of Tylenol is one or two 500mg tablets up to 4 times in 24 hours.  The recommended dose of Ibuprofen is one or two 200mg tablets or capsules 3 times a day.  So your doctor was a bit foolhardy advising you can take all you wanted.  But that said I take both, within safe limits, regularly as like you, I have quite severe pain in my back passage (and they help).  I have post-it notes that remind me when I last had a dose to make sure I don't OD.  Be careful about restricting your dose of Tylenol to no more than 4 times in a 24 hour period and you should be fine.

Your post struck such a chord with me.  I went to the doctor complaining about feeling a bit tired and mentioned thin poos and two weeks later was told I had a tumour in the rectum with some local lymph node involvement and the spots on lungs.  I was devastated and it wasn't until some weeks later I first felt some hope when I met my oncologist. She was so patient in explaining everything to me, was bullish about my treatment (six months systemic chemo followed by chemo/radiotherapy, then lung ablations) and she told me that sometimes this cancer can be eradicated and she was hopeful that this was the case with me.  She promised nothing but her positive attitude helped me through all of the treatment; I never felt the need for a second opinion and I found out later she is an expert in anal cancer and was part of the research team that changed treatment world-wide for advanced anal cancer.

I am so happy to hear that you are six months NED!  

Irene75359,

Yes, our situations sound similar.  Hugs to you as you continue to heal…may we both offer hope to those with similar cases!

I have a book called “There’s No Place Like Hope,” by Vickie Girard.  In that book, Girard quotes Gracie Allen, “Never place a period in your life where God only meant to place a comma.”  I can only add to that “and don’t let anyone else place that period in your life, either.”

Onward we go. Triumphant through the comma.

Red

Thanks, Irene! I never go over (and usually don't get up to) the max dose for a 24 hour period, but I rarely have more than a day with no pain relievers at all. I guess I've just switched my panic/worry to this, now that the radiation misery is starting recede.

Can't go too long without a panic target.

All the hugs to you, Red! Thanks for the terrific perspective!

Hi Suz ridetbred!

So, a friend who endured chemo-radiation a few months before I did recommended I get a cream called Recticare to manage the pain locally.  It’s basically a hemorrhoid cream/mega-strength Preparation-H, with lidocaine and the same antihistamine as in Prep-H. She said her oncologist ok’ed it.  I ordered it from Amazon, but fortunately never felt like I needed it, so I can’t say how well it works from personal experience.

You might ask your doctor if that would be an option for you for pain management, if you’re looking to get away from Tylenol.

Have a great day!

Red

Ordering it now!

There’s also a fabulous ready made syringe of anaesthetic gel that you can ask your doctors for called “Instillagel”

I literally couldn’t live without it during and after treatment until things had healed. You can insert internally and use externally. Absolute godsend and much stronger than anything you can buy over the counter. 

Also helps give ones poor liver a rest after all the chemo and other drugs we’ve been given along the way as it’s a topical pain relief! 

Hope that helps! Xx 

4 weeks later and I've just had scan results, no sign of cancer having spread!! The relief is enormous as you can imagine, even when my GP told me my gall bladder will very likely have to be removed! There are gall stones and a widening of bile duct, which is puzzling, so I'm being referred to a liver surgeon!

Thank you everyone who have held my hand virtually through this, you've all been great! I'm keeping well away from Dr Google in future!

Off to London tomorrow, it's going to be very sad but I'm still glad to be going!

Moira x