PET scan - bad news

I am so sorry that you are dealing with this and my heart goes out to you, I remember only too well the devastation a stage IV diagnosis causes.  However, one thing has become clear to me 19 months down the line, and that is absolutely no one, including the most experienced oncologist, can predict how a patient is going to respond to treatment (or how long they've got, for that matter). 

I am guessing that you are going to have at least six months of carboplatin and paclitaxel chemotherapy which I had first before any other treatment.  My oncologist was part of the worldwide research team that changed the standard treatment for advanced anal cancer, the results were so good.  When I first met her, she was very bullish and said that sometimes this cancer can be eradicated, and if not, good long-term control.  In her department there is a woman (and I am sure there are many others) who has been on a long-term 'maintenance' regime of chemo where the cancer is treated much like a chronic illness.

I tolerated the carbo/taxel combination very well and the only real side effect was tiredness for a couple of days after the treatment.  I lost my hair but found a wonderfully helpful person on Etsy who not only sold the most comfortable flattering chemo caps but made a few for me in colours that matched my outfits - happy to give you all the details.

When I was told of my diagnosis, I went through my wardrobe thinking I'll not need this anymore, no point in buying new, I had no interest in anything and was in the complete depths of despair.  I couldn't look or plan ahead, or see any future at all.  My GP (a long-term cancer survivor himself) was so helpful and prescribed mirtazipine anti-depressants which helped greatly.  And gradually, (and you mightn't think it right now) I became used to the news and my life picked up and became normal - a new normal, not like before but much much better than the early days.

There is another forum user RedCurlGirl (I hope you don't mind the tag RedCurlGirl) that also has experience of stage IV and she answered another forum user and was so inspirational I revisit it every so often. 

Sending you a huge hug and please come back and let us know how you are getting on.

Irene

Thank you for your kind reply. My head is just spinning right now. I am so tearful. 

would you mind giving me details of your oncologist? I want to look at options. I’ve just been told 2 weeks radiotherapy first (don’t know if we are doing chemo at same time) but then hardcore (her words) chemo. 
I am in on Wednesday to discuss this. So I would like to have possibilities to discuss. 
when I asked about other options/regimes/clinical trials; my oncologist didn’t seem to know of any. But if there’s something out there I would like to know

Sandra

And yes please can I have the details for Etsy x

I have sent you a friend request Sandra x

Hi SansG,

Just wanted to come along to say how sorry I am that you’re facing this right now. You’ve already connected with Irene75359 who seems to have been in a similar situation to yourself prior to treatment, I totally agree that although this diagnosis must feel devastating for you with the advancement in treatments many, many more people these days are ‘living’ with cancer opposed to dying from it. It must be really difficult at the moment but try & concentrate on the word ‘treatable’ this word is likely to give you many, many more years. I also agree with what you’re doing, ask questions, second opinions if necessary, you are your best advocate. You know where we are should you need us.

Nicola 

Ohhhhhhh, I can only imagine how your mind is spinning! Your entire world must be rocked off its foundation.

Someone wrote on another thread here recently the important phrase 'incurable does not mean fatal.' I'm so glad Irene has seen and responded to your post, and Red is also a marvelous resource. 

I have nothing useful to offer but my best wishes and tons of positive energy pouring your way through the ether and across the pond. Holding you in my heart.

Suz

Hi SansG,

Oof, this Stage 4 baloney is awful, isn’t it!  I know all of the feelings you’re having.  I’m glad to see that Irene75359 has chimed in.  She’s right—unbelievable as it seems to you now, things get better.  For me, I had a markedly different attitude once I had a treatment plan that I really believed in and STARTED that treatment.  I have felt, for the great majority of the time since treatment began, really unstoppable.  My life is full and happy, and now I have the freeing perspective of someone who can say to most day-to-day problems, “hey, [insert problem here] isn’t cancer, so I’m sure we can handle this!”

Some of what follows is a cut and paste from a previous post*

In August of 2021, I was diagnosed with SCC anal cancer, metastatic to the liver.  The primary tumor, itself, was not that large, I felt great, had only one symptom (bloody/mucous stool) which sent me to the doctor.  Initially I was told hemorrhoids, then cancer, then cancer with mets.  It was stunning.  I was 42, ran daily, did mixed martial arts/kickboxing/self-defense classes, rock climbing, taught ballet, and held down the fort at home with kids aged 7 and 9.  The oncologist in my hometown offered lots of systemic chemo for the liver mets and chemo-radiation for the primary.  She told me “this is definitely treatable, and in some cases still curable.”  She told me she could put me into remission “for a long time.”  I didn’t ask how long was her “long time.”  I have children whose babies I expect to bounce on my knee.  Anything less than that wasn’t going to be something I wanted to hear.

I sought a second opinion out of town with a doctor who was going to be more aggressive and was more optimistic toward “cure.”  Still, I sought a 3rd opinion at MD Anderson in Houston.  It is widely considered the leading cancer treatment hospital in the country, and amongst the best in the world.  I figured they’d offer me what doctor number 2 offered.  Instead, they also suggested the systemic chemo, the chemo-radiation, BUT they offered me a liver resection surgery to remove the larger liver mets, and microwave ablation to obliterate the smaller deeper mets.  They were VERY optimistic of “cure,” so I chose their plan.  I finished systemic chemo in early December, finished chemo radiation in late January, had the surgery in early March, and was declared NED in April.  Furthermore, the biopsy of the surface liver met showed no live cancer cells (thank you, systemic chemo!)!  As of October 26, at my most recent check-in, I am continuing NED (9 months after chemo-radiation completion, 6 months after surgery).

Early on in treatment, I was connected to a woman through the Anal Cancer Foundation’s Peer2Peer program.  She happens to live in Houston and was treated at MD Anderson, as well (even had the same radiation oncologist as I).  Her diagnosis sounds a lot like yours.  She was Stage 4 due to distant lymph spread, not liver or lung spread.  She is now 3.5 years NED!  She is beautiful, funny, relentlessly positive, full of faith and love and hope, and living a very full life of travel with her husband and parent to her young adult son.  She is active in her church and has even launched a nonprofit to help those traveling to Houston for medical care (not exclusive to MDACC).  I see her when I go to Houston for my 3 month check-ins, and she is a hoot!  The best part of that story is that one of my oncologists at MDACC says that for most cancers, doctors are willing to say “cured” at five years continuous NED, but for SCC anal cancer, 4 years of NED is as good as “cure” to him.  Her “NEDiversary” is February 14…2023 will be 4 years continuous NED for her.  I pray for her because she is a precious person, but also because a victory for one of us is a victory for all of us.  It means the medical community is getting closer and closer to cure for all.

As you know by now, every single cancer patient and diagnosis is a little bit different.  MDACC did some tests, including genetic tests, to determine the best course for me, and not every plan will be for every patient, BUT, I encourage you to keep asking questions.  Ask ALL the questions, get a second opinion.  It doesn’t hurt to ask for what might be other options for you.  This is your LIFE!  And as I posted elsewhere, comedienne Gracie Allen had a wonderful quote, “Never put a period where God only intended a comma.”  Irene75359 is right—no one really knows how anyone will respond to treatment…don’t let anyone else put that “period” in your story, either.  Diagnosis is a comma—so I am sending up good wishes that you learn of a solid treatment plan soon, get started on it, and then come along and write some run-on sentences with the rest of us! 

Hugs and good thoughts your way,

Red

Hello, and sorry for not replying sooner, although I registered at this forum to reply on your (and one other) post. Some things that you mention seem similar to my situation, but with this disease you can notr truly compare cases. However, I had first 6 cycles of systemic chemo with carboplation and taxol that seem removed PET  signal from abdomen lymph nodes and reduced the size of primary, also high in the anal canal, probably at ano-rectal junction. Then after sufficient recovery with my crazy sport (although doctors pushed me to start it sooner) I had Nigro with 6 weeks of radiation therapy and concurent chemo. 

The thing is you not just have to start this chemo-radiation protocol, but also tbe able to complete it for the best possible tratment outcome. 

So, 2 weeks of radation seem very strange, as one have to accept right Nigro protocol9with likely 5-6 weeks of radiation TOGETHER with chemotherapy for the best therapy effects (chemo is considered tohave senthisizing  effect on radiotherapy, or vise versa). In my case it was after systemic chemo 6 cycles to manage systemic lymph-node-only spread. I saw at this forum some other post with similar strategy, while in the literature i saw a case with straight Nigro protocol (without systemic chemo first) with good result, though it was an immunocompromised person with AIDS. But everyone is different when it comes to this diesease.

PET also can be a tricky thing. I studied recommendations for good PET  scan without false positives, after my first PET in September 2020. One issue is one have to be in good rest and no worry, dressed warm and have no stenous physical activity before and during test.I think this was emy case on first PET, plus I was breathing deeply with my diaphragm and all core muscles. This is how I usually breath and which is the way I relax, but apparently it was wrong for PET.  When I repeated PET in November 2020 before any treatment, I removed completely couple abdominal hot spots on PET and reduced some others, though a year later radiation oncologists still considered that initial signals while making the program of my extended radiation therapy for both pelvis and abdomen that I did not object.

I wish you have a right treatment by good doctors!

Hello and welcome. Sorry you have had to join this forum but you’ll be so glad you did. The knowledge you’ll gain will be so beneficial.

i was diagnosed last January 22. pet scan showed I had spread to lymph nodes outside the pelvis. So grade 4. My primary was in between the vaginal wall and bowel wall and had invaded both. At the time I was told the lymph nodes were in the peritoneal lining and I was told the treatment was palliative only. I stupidly asked how long I had and was shocked. I was started on chemotherapy within 1 week and completed 6 months. I was devastated. After 3 months I was scanned again and there was no further spread so carried on with chemo. By now I was starting to find the strength to argue my case and so requested a 2nd opinion. They were reluctant but your entitled so they had no choice. 
mum so glad I did because the 2nd team disagreed about the location of the mets and thought they were not in the lining. Fast forward to September. I had investigation via laparoscopy and low and behold there not. They are outside the pelvis but I was then told they can all be targeted with radiation and are all operable (removable) 

I’ve just finished the gruelling 5.5 weeks of chemo raciation which seems standard for anal cancer and I’m being scanned in 3 months. 
mid there’s no further spread (fingers crossed) then I will either have an op to remove whatever is left or be monitored every 3 months if it shrinks fully. 

my consultant had recently commented saying - if this treatment works, there’s no reason why I can’t go on to live a normal life. 

so please, don’t give up, fight your corner, get 2nd opinions. 
you don’t have to do all of that right now, just allow it to all sink in, get your head in the right space, however long that takes and then question everything. 

if you want to message me direst, feel free.

best of luck, kerrie

A junior oncologist said much the same to me, prior to me starting six months chemo that, after my pre-treatment scan, there was 'something' in the peritoneum.  I was in the absolute depths of despair and then later saw the head oncologist.  She said 'I am not a betting person but I would say this is definitely not spread - it is inflammation, but of course we will be keeping a very close eye on it'.  Her words helped me through the next six months, in spite of seeing another oncologist (very pleasant) who sucked her teeth and said, 'well there is this area in the peritoneum'.  Fast forward and talking through my latest scan results the medical oncologist said when my husband asked (out of my hearing) he was told 'there is absolutely so sign of anything in the peritoneum'.  I am so glad you fought your corner, you have come through the worst and I have been thinking about you x