Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

Hi all, just a quick question. Does a chest ct scan show the liver? Or part of the liver. I know it’s a daft question. Thanks you

Pretty sure chest scans included the upper abdomen but not 100% certain as my scans are always chest and full abdo (coz my cancer is in my abdomen).

I had colon cancer in august. No spread. Also a Medistinum mass, both unrelated. Chest mass, no change since found in august.
Have regular chest scans. Operation soon.
Also had gallbladder out two weeks before colon cancer was discovered in august.
I get sort of fluttering feelings on my gallbladder scar. No pain. I know it can be down to wind and The digestive system plus wind. As half my colon was removed.
last chest ct scan was two weeks ago.
Im paranoid it’s in my liver.

@Shityshitybangbang I had a ct scan of my thorax, abdomen and pelvic this week which includes the chest. Did you get a letter saying what they would be scanning?

I have sulphur eggy burps again hoping it's not another sign of having diarrhoea starting up like last time. I got some tablets to help if this happens thank god.

catmomof3 · Today 16:52
Your scan sounds like the one I’m meant to be getting in July for my colon.
I get my chest scanned every three months for another primary cancer.
So in July because Iv just had my chest scanned last week. They will only scan below my chest next time.
They were going to wait till July to do the whole body, but I’m getting the mass taken out my chest soon. Waiting on a date.
I think they need to watch the radiation with scans.

@mesocortical well done getting through DIEP! How does it feel?

Crossing my fingers for your histopathology report now.

What happened during anaesthesia... that you compared it to chemo and sepsis? Sounds awful.

@TwigTheWonderKid

I have been looking out for your updates on Imperial and HIPEC. I've been hoping so much that they could do it, but have the feeling now that they said no. I really hope I am wrong. Sending you hugs and love from a few miles away x

Hey @SummerCycling thanks for asking.

I've been lurking and mainly posting a little on the Stage 4 thread as things are not great and I feel a bit more comfortable over there.

I had an appointment at Imperial in April but for some reason known only to the stupid NHS admin system, they didn't have my latest scans, do it was pointless. They looked them at the following week's MTD and there had been progression so they wanted me to have 3 months more chemo and then be re-scanned and reconsidered.

Then there was this fucking massive wait where despite me, my GP and hospice nurse chasing, I heard nothing from my oncologist. And surprise, surprise, they hadn't received the communication back from Imperial 🤦

Finally saw oncologist last Tuesday. Was due to start second line chemo (Folfiri) tomorrow but they called yesterday and left a message to say my bloods aren't good enough so are postponing.

The tumours have grown significantly; I look about 7 months pregnant, so no idea if it will work when I finally start.

Sorry, that was rather an essay!

Phesgo is going okay thanks, I've felt sick the day after during the last couple of rounds but it has passed fairly quickly. I'm having regular echos which I assume are okay - I've not been told the results but treatment continues so I assume that means all is well. I've lost track slightly of where I'm up to - either 10 or 11. Definitely over half way.

It's good to hear you are keeping busy and finding some enjoyable things to do xx

@TwigTheWonderKid very sorry to read your update, and how frustrating about the delays xx

Had my chemo cancelled again.

My Neutrophil's were .9. So went up .1.

How is everyone?
CT Friday. Feeling a bit stressed as pain in my ribs for a couple of weeks now. Hope it's not what I think 😳

Best of luck @Enigma52hope all goes smoothly and fingers crossed for the result xx

Sorry to hear about chemo being cancelled @tothelefttotheleft does that mean waiting another week?

@demivolte

Yes it means no chemo for another week.

@Enigma52 keeping everything crossed for you, I really am, and of course everyone on here.
I’ve had a very dark couple of days to be honest. I am going ahead with the kidney bilateral nephrostomy probably next week and will try some clinical trials but I genuinely feel as if I’m watching everything from the outside.

I met my oncology team today for a check in before I start cisplatin and radiation and my ct scan last week showed that the mass that was causing my right pelvic lymph node to be enlarged has shrunk and my body is responding to chemo.

Downside was told my body pains are myalgia caused by the chemo so I'm celebrating my small win today with some pain killers and werther's orginals lol.

@TwigTheWonderKid

Thank you for your reply, and I am so, so sorry to hear that.

How utterly devastating getting to Imperial only to discover the crucial documents hadn't even been sent. I can't begin to imagine how awful that must have felt, so completely and totally let down. I'm so sad and angry to hear that happened. Then that your oncologist didn't see you sooner or have the Imperial information.

I suppose you've contacted them already, but PALS have helped me twice with horrendous waiting times. Once they got an appointment brought forward, the other time they got the person to phone me the same day I'd emailed PALS.

Do they know how long to expect for your bloods to be ok for Folfiri? Is it things that can improve in time or would it need medications? Again, I am so sorry this happened and you couldn't start back on chemo as hoped. Only reply if you feel like it, I really understand if you don't.

I've been thinking about you and will continue to do so; I'm hoping so much you can get the treatment you need and deserve xxx

@demivolte

That's good to hear your heart is holding up. I don't think you had EC chemo - or did you (?) I know that Epirubicin then Trastuzumab is particularly cardio toxic, although each one is separately too. Over half way on Phesgo, that's a good feeling isn't it. Her2 treatment can feel so interminable it came as a sort of shock to me after 1.5 years to actually reach the end of the treatment plan and not have to attend the Chemo Unit any more! It had become such a regular routine after all that time. Luckily, the chemo nurses were lovely and kind people. Best of luck with your further Phesgos.

There was definitely a member of the Mumsnet threads here who had to stop Phesgo - or it could have been Herceptin on its own - because of a lowered LVEF. I hope that person is doing ok, both heart-wise and also with the cancer treatments.

@tothelefttotheleft

Sorry to hear that, it's frustrating and scary when treatment is delayed. I remember that well: my radiotherapy was delayed for ages due to problems after surgery.

I suppose at least your neutrophils are going in the right direction and AFAIK 1.0 is ok so hopefully next week your level will be high enough. Keeping my fingers crossed for you.

@Enigma52 Good luck on Friday. x

@Whatevershallidowithmylife I hope the nephrostomy can be done next week and that it's less horrendous than the first attempt. Thinking of you x

@catmomof3 Good to hear your body is responding to chemo.

@tothelefttotheleft how are you feeling generally now and how's the leg? Have they rescheduled your next chemo session? Fingers crossed!

@Whatevershallidowithmylife sorry you have been feeling down; it's a horrid feeling 🌻🌼

@catmomof3 Great news you are responding to chemo.. definitely take every win and celebrate!

@MothralovesGojira How are you and DC doing?

I'm okay, apprehensive for Fridays scan. Back to work on July 1st ( after 8 months off!) I've told myself I will give it a go and if I struggle, I will leave and look for something else.

Found out that a lovely member of a FB group I'm part of, has passed away. She didn't get to try her next line of treatment even. You really need resilience to deal with this shit.

I've been wondering about @MothralovesGojira too, and also @lucysmam and of course the others who haven't posted recently.

@SummerCycling

Thankyou.

@Enigma52 have been ok up to today but not had a good day today. Got pain one side of my lower head.

No leg problems. That must be someone else x

I'm seeing my surgeon Friday because the lumpectomy boob isn't right. Numb down the side and lumpy/ hard round the nipple. Had my op in October.

Hadn't had a good feel in there since before surgery. There also a lump in there too.

@tothelefttotheleft oops, yes, it's another member of the group, sorry 🙈

Wonder what the head pain could be, has it just arrived today? Does it go away with painkillers?

Do you mean there's a lump still in the lumpectomy boob? Definitely raise that with surgeon on Friday. The numbness could be where nerves have been severed. I had a full mastectomy and reconstruction. That whole " mass" is totally numb and weird.

@EachandEveryone how are you doing?

@Penguinsa I think it was this thread(?) where we were discussing length of radiotherapy? I find this a really interesting algorithm from MDAnderson Cancer specialist hospital in the US (2023):

https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-breast-invasive-web-algorithm.pdf

I've attached the page on how they work out length of radiotherapy for each patient. Lowest risk for them seems to be age > 70 years with hormone positive, HER2 negative, grade 1-2 disease, T1-2, negative lymph nodes, so sort of matches what the Marsden radiologist told me (she said only low risk hormone positive, HER2 negative patients were getting the shortened version of 5 days radiotherapy).

She most likely simplified it because she was explaining why so many patients get 5 days but they told me I needed 15. I don't match a single MDAnderson criterion to be lower risk. If I'd been a patient there, it sounds like I'd have had lots more radiotherapy than I did. Really hope 15 days was enough.

Amazing really how this differs so massively depending on country / hospital I find.