Here we go again

I am so so sorry about these results; I completely understand your devastation.  I have been thinking about you after your last post and was hoping you would come back with positive news. I am tagging RedCurlGirl (Red, I hope you don't mind) who also had tumours on her liver, had them treated and has just celebrated a year clear, and if she picks up on this I am sure she can give you more guidance as she has experience of liver tumours (and has loads of positivity).    I had lung ablations for spots I had at diagnosis, so I had six months chemo first.  The standard treatment is carbo/taxol chemotherapy which I tolerated quite well, I did lose my hair but found an amazing hat-maker on Etsy who made me caps to match my clothes.  I am happy to pass on details once you get your head round this next phase in your treatment.

Sending you a huge hug, I continue to think of you.

Irene xx

So sorry to hear this. I hope they can get on top of it and get it treated asap x

Oh BecU86 , like Irene75359 , I remember your post and was hoping for an update with news better than this.  I’m so sorry to see you’ve found yourself in this garbage situation, and I can only imagine how rattled you must feel after assuming all was good following the treatment of the primary.  You can read my bio by clicking on RedCurlGirl , I think, so I won’t dive into the full details of my passage through an anal cancer diagnosis with liver mets—just know I have some experience in hashing this diagnosis out (and burying it forever, as it looks right now).

First things first.  Cure is still within reach.  It can be done.  Get ready to do the work, but don’t lose hope.

Next, the nitty gritty of the treatment options I was offered.

Plan 1: offered by my local oncologist; 8 rounds of systemic chemo, the names of which I don’t recall, to address the spread; then 6 weeks 5-FU and mytomycin plus radiation to address the primary tumor

Her words, “I can put you into remission for a long time.”  I didn’t ask how long that would be.  It was better than nothing, but inspired me to look further.

Plan 2: offered by a doctor out of town; at least 4 rounds of carboplatin/paclitaxil, then SBRT to address the liver lesions.  SBRT stands for stereotactic body radiation therapy; then the same chemo-radiation treatment for the primary

His words, “It’s hard to have a cure when there’s already spread, but you’re young no otherwise very healthy, so we can be very aggressive and it may be possible to cure.  Obviously, this sounded better than Plan 1, and I was *this close* to stopping here and accepting this plan, BUT…

Plan 3: offered by MD Anderson Cancer Center in Houston, Texas;  THIS was my plan! THIS is my team!  I met 4 doctors in one day and Every. Single. One. said “curable” to me.

First, a couple of the liver lesions were so small, that the liver surgeon was concerned with chemo they’d shrink enough to not be visible on scans, but wouldn’t be completely gone and could make a comeback, so to speak.  Thus, after the first round of chemo, he recommended I have steel pins placed on the lesions, outpatient procedure, then continue with 3 more rounds of chemo. That surgeon was right, by the way, all of the lesions shrunk, and a couple of lesions completely disappeared during chemo, but the pins were there…this is important for later!  Additionally, at the end of the 4 rounds (3 months total) of systemic chemo, the primary tumor was no longer visible on scans, and was only barely visible in anoscopy.  Bottom line is the carbo/taxil worked REALLY REALLY well for me in all ways.  After systemic chemo, I did 6 weeks of cisplatin/5-FU chemo with daily radiation to completely eradicate the primary.  Then I rested, no treatment of any type, for 6 weeks.  I was scanned again, and there was further shrinkage of the liver lesions and nothing left of the primary.  The surgeon performed a partial resection of the larger remains of the lesions, and ablated the areas where the smaller lesions had been (marked by the pins!).  It was about a 5 hour surgery, a lost a gall bladder, about 10% of my liver (has already regenerated), and gained an 8 inch scar.  When biopsy of the sections he removed was complete, there were NO LIVE CANCER CELLS detected!!  It was dead inside me before the surgery even happened!  In short, I feel like a bada$$, and I’m probably not supposed to say that word here, but I just do.

Six weeks after surgery, I returned for scans and bloodwork.  At that time, the doctors ordered a DNA test which detects fragments of tumor floating around in the blood.  It’s a new approach to cancer detection and isn’t fool proof, but it’s a tool in the tool box.  The prior September, before I’d had any treatment, that same blood test was positive for tumor DNA.  By April, after all of the treatment plan, it was negative.  I return now every 3 months for regular labs, CT, and anoscopy.  I have been NED officially since April 2022, but my surgery was March of 2022, and I completed chemo radiation in January of 2022.  Thus, I’m a year out of chemo-radiation with no evidence of disease.  Nothing is guaranteed in cancerland, we all know that too well, but I grow more and more confident with every 3 month check-up.  I feel great, I do all of the things I want to do.  People who saw my hair loss but didn’t know I had cancer have told me since then that they assumed I just shaved my head, because I have been very active and involved and “well” throughout the whole treatment journey.

So.  My advice to you is to ask ALL the questions, get all the info.  Ask why and ask why not, ask about carbo/taxil, ask about SBRT, ask about ablation, and ask about resection.  Just don’t ask for stats or percentages or life expectancy or any of that.  Do not let anyone put a period where God only intended a comma (a Gracie Allen paraphrase).  Every cancer diagnosis is different, no matter the similarities, so every plan will be slightly different.  You are you.  Your case is your case.  Hang in there, get the info, get a plan, and good luck as you do the work.

Message me if you want to chat more.

Big hugs,

Red

So sorry to hear this, sending hugs and positive thoughts that they get you well asap!

Moira x

Hi BecU86 , I’m really sorry to be reading this, I see Red has already given you a really comprehensive reply concerning treatments that were offered to her & some great advice. Sending you lots of hugs & many healing thoughts are coming your way. I hope a treatment plan can be decided upon really soon. 

Nicola 

Hi Red thank you so much for your response. It’s a really difficult time right now and your words have really helped. Thank you everyone for your support. I’ve got this and will be updating as I go along! Xx

Yes you do.  You’ve got this.

Hugs,

Red

Hi all, sorry to jump on your post BecU86 I’m in a similar position myself. after getting postive result in December I have also been informed that the tumour has returned and has spread to my lung, I am currently undergoing 12 weeks of carbo/pactx I’m on my fourth week, they will scan me after the 12 weeks. they said this is to prolong life as opposed to curing it. I’m not giving up that easy I try and remain positive and are looking at other options,  
Not sure what the next steps are after the 12 weeks with NHS all depend on the scan results

i am also seeing a pain specialist atm, the pain from the tumour is horrendous, I don’t like taking morphine because of the constipation issues so I am on pregabalin for nerve pain but this is not working, any advice here would be great.  You’re post has made me feel a lot better, thanks RedCurlGirl 

sending love and prayers to you all xx 

Sorry to read this. Sending you a big hug. Tricia. xx 

Hi Bellatrix777 , I’m so sorry you’re also facing this, you sound as though you’ve a good positive attitude which although it must be difficult is definitely the way forward. Sending lots of healing thoughts your way & good luck with your continued treatment. Remember we’re here to support you wherever possible. 

Nicola