Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

@Silkierabbit @AGreatUsername Thanks for the support. I have to wait until 8am on Monday to submit the form. I'll set my alarm to remind me. I'm waiting for stomach surgery as well, so need to get this cancer cut out soon. I'm dreading it, but it's good to know that you are there for me. I really hope that I can get plastic surgery. I used to be a model so my face was really important and obviously I've never had any work since the first surgery. No room for vanity with any cancer. I've been incredibly lucky following bowel surgery as I had some pre cancerous lesions removed. I don't have anyone IRL who understands so thank you so much.

Not many people in RL understand cancer unless they’ve lived it. I didn’t, and I still wish I could go back to that ignorance, but the thing I’ve found is that the CancerTown residents are all endlessly supportive.

Chiming in with support for the PICC line @chubbychipmonk . The procedure to put it in was so much easier than I imagined and not painful; yes it goes to your heart but it was honestly so much better than having blood draws and cannulas via needle as my veins were well fucked from first chemo 11 yrs ago. I didn’t have the metal clips in as allergic, but it was securely affixed via something else.

Honestly: the first few times the nurse cleaned and re-dressed it it was painful, but paracetamol-level painful. It calmed down. I had to be careful as have 4 year old. I did find it annoying to have it hanging out my arm & there were times it really pissed me off. But I had it in for 6 months which is maybe longer than you might have it? And ultimately I was grateful for it every blood test and chemo.

And I say that as just having had a really painful & horrible cannula experience for my CT scan. Would love to have a magic PICC line that just appears when I need it.

I got through my chemo without a picc but had neuropathy so could not feel the cannula which helped.

That must be hard November if its taken your work away, I think the appearance changes damage your confidence as well especially if you were a model. Hope they can sort it. I have found it hard having work stopped and appearance trashed as well as cancer but gradually things are improving.

Nothing makes me feel more like a cancer patient than having to get a cannula as I always associate them with scans and the hell of my initial diagnostic workup. Ive been swapped out from CT scanning and while it means longer MRIs I don't mind because it means no more cannulas!

'Cariadz . Sorry late replying, Im doing the private route because its impossible to get an appointment with the GP, at least going private means I get to see someone fairly quickly. I cant get a scan through Oncology until the end of February, which doesnt help my mental health.With regard to the dog, I am registered with the Cinnamon Trust, who put me in touch last year with someone who could only do dog once a week, they rely on volunteers. I have a walker twice a week but they cant do more, unfortunately dog walkers/sitters are so busy they wont take on any more .I have a very active busy dog unfortunately, should have been a greyhound, they are couch potatoes ! I have previously had a session with Macmillan counsellor, who wasnt much help! I think its preying on my mind so much because I have always been so independant.

Ill have to soldier on like many on here are doing, Im just having a pity party at the moment

Pity party is fine, I’m having one too @thereisonlyoneofme . Did you look up Borrow My Doggy in the end?

I find with Macmillan it’s the luck of the draw. I didn’t have a good counsellor through them but just calling up their advice line has yielded better results as you can offload to them.

Mowley77 Yes I did look at Borrow my Doggy but bit dubious about it. I may revisit!

Chiming in with a cold capping experience. @WorryMcGee I also had biweekly Paclitaxel rather than the sightly more common weekly. I'd lost about half of my hair during EC (also biweekly) and still looked pretty presentable when I started Paclitaxel, but it kept thinning. No big, dramatic sheds, but ongoing daily hair loss. By the end of chemo I had some long hair left (a pathetic amount really), and I already had some regrowth that must have happened during the Paclitaxel. So I ended up having to cut it very short once chemo was over, but I managed to avoid being completely bald, and I found that okay, emotionally. Regrowth was very fast as well.

To anyone else cold capping or with weird regrowth (I looked like a poodle for a while), wide head bands are your friend. They can be such a fashion statement. Anthropologie or Oliver Bonas are the best places to buy!

On vascular access, I had a port. If that's an option @chubbychipmonk , take it. It's easier to maintain than a picc (no weekly flushes needed). Such a life saver!

I hope everyone is doing ok…whether waiting for scans or mid treatment.

I had my first appointment with oncology yesterday and received the results from my mri scan and Ct scans. I came away extremely relieved as the scans showed no distant spread - but I didn’t really take in much else or feel like I asked the right questions. I didn’t get any clarification on how many lymph nodes,other than the one they biopsied, showed positive for cancer.

The treatment plan for me is 4 rounds of EC followed by 4 rounds of Docetaxel with Phesgo to be given along side it. Surgery hopefully after that.

Im worried now that I have to wait over two weeks/3 weeks to start. When I first was diagnosed back in mid Dec I had no pain or awareness in my armpit. Now I do which tells me it’s spreading.

I guess I’m just asking for advice from anyone who’s had a similar treatment plan. Is it possible to pay for the first round of chemo privately? Is it worth getting a second opinion…I’ve got the time! I’d much rather have the surgery first then chemo but he said he wants to shrink the tumour first.

I was so relieved yesterday but now I’m back to a high level of anxiety as I still feel frustrated at waiting.

@Whattodotomorrow I had 3 rounds of FEC then 3 rounds of docetaxol so quite similar to your treatment plan. I had it privately under my DP's work health cover and each session was around £5-6K. This was as a private patient at an NHS unit - it might be even more expensive at a private hospital. It took about a month from first diagnosis before the first session, which might have been a bit longer than usual as mine was also over the christmas period (2020).

Had scan yesterday. Need to contact hospital to get results in ten days

Thanks @HauntedDishcloth it will be close to 7 weeks until treatment starts which seems a long time giving an aggressive tumour chance to spread. I can afford to self fund one round of chemo but probably not 8.

Does anyone know if the mri or Ct scans show how many lymph nodes are effected? Or is it a case or waiting until they are out?

@Vaccine001 i can totally sympathise with you. I’ve just gone through the same anxiety of waiting over Christmas and new year to find out scan results. I went to my gp who prescribed something for me to help with the anxiety.

@Whattodotomorrow it gives them a good idea of how many are impacted, if they are sizeable to take up the contrast (CT injection), but they can't tell exactly until they get in and surgically remove - they test lymph nodes to see if there are micro bits of cancer in each node and remove all the nodes up to the point where cancer isn't found. Like pruning a tree in a way. I had four clearly involved nodes on u/s and MRI, but when they went in they found 7 with cancer in total.

Its the same with the actual tumor size - it may be larger or smaller than what was seen on the MRI, which can cause some ladies to get very upset if it changes their staging.

@Whattodotomorrow sorry to hear how worried you are but in the scheme of things another two or three weeks before starting chemotherapy won’t make a difference. By the time you have met the nurse for the chemotherapy chat and had bloods and perhaps a PICC line fitted it will be time to start treatment. The point of chemotherapy is that as well as treating the primary tumour it will also mop up any stray cells that might have gone wandering. Scans may show macrometastases in the lymph nodes but not the micrometastases. These are only known about once the nodes have been removed, for example when they sample the sentinel nodes at surgery. Hopefully all that shows then is scar tissue from treated cancer. This is called a complete pathological response and is the holy grail of chemotherapy. If you don’t get a PCR then it is likely you continue with some form of immune therapy or chemotherapy for a while after surgery to give a better chance of killing off any wandering cells.
It is all very terrifying when you don’t know exactly what is going on and your imagination runs riot with every ache and pain. Can you use the time to get the freezer stocked with ready meals and arrange lifts for the family to activities? Your friends will be keen to help.
sending strength
Top x

@Whattodotomorrow My lymph nodes looked clear from ultrasound and MRI, the surgeon said on appearance they looked fine but they did find a small amount in 3 of the 5 removed. I then had chemo followed by a full axillary clearance, there was no sign there had ever been any cancer in those nodes.
I agree this point of waiting to start treatment is horrendous but they need to get as clear a picture as possible. From talking to others, treatment plans seem to vary so much dependent on your type of breast cancer, size, grade etc. Once I started treatment, I mentally broke each bit down into smaller steps so I felt like i was often meeting mini milestones.

@Whattodotomorrow my lymph nodes also looked fine on CT, there was 1 slightly enlarged but they told me after surgery that it didn’t look suspicious. They were wrong because 8/10 removed had cancer in them. I imagine only a very tiny amount as they hadn’t changed but still. It was the only thing that really terrified me. Especially as 5/5 on the right were positive so no one could say it hadn’t moved up! Hopefully Chemo has sorted that but we will see. Bloody lymph nodes. 😡

@Novemberhater I was thinking about your post. You say what you had was minor compared to some but you had a disfiguring treatment that has cost you your modelling career and left you traumatised. In comparison most of us have lost a relatively superfluous body part and are able to resume our normal jobs and activities once we are through the admittedly gruelling treatment. ( Okay not everybody - I know that!) The fact you are struggling to refer yourself back shows how deeply this has affected you. Of course you need to act before things get worse but also be kind to yourself! Could you get some counselling for what you have been through? Have you had advice on new directions for your career? It sounds life shattering.
My DH has similar spreading skin cancer on his face and has had surgery twice for it. He needs to go back but is procrastinating mainly because he hates hospitals so much and wants to wait till my treatment is finished. Even he struggles with the scars and he is a cheery old pensioner.
Sending hugs
Top x

@TopOfTheCliff Thank you so much for your helpful reply. You are so right about my reasons for procrastinating over getting treatment again.

I have gone in a new direction career wise in a completely different field where I wfh.

I've got photos etc ready to send off. I've plunged into depression so find it hard to do things and get motivated. I must keep reminding myself how horrified the practice nurse was when she saw the lesion. She actually shouted down the corridor as I was walking away to deal with it straight away. That was at least three weeks ago.

Thank you all. I know the waiting is the worst part. I looked up the drug Phesgo to find out more about it and it’s for those who are her2+ and have evidence of it spreading to the lymph nodes, so I guess there’s my answer. Psychologically I think I could cope more with the surgery aspect first - I just want to get the cancer out of me!

I haven’t told many people in real life other than family. I feel like my confidence has just vanished. I live in a small village and I’m dreading being this month’s news as I’m normally a very proud and private person.

@thereisonlyoneofme I found someone through ‘Borrow my Doggy. She does five days a week with my eight year old cockapoo who still thinks he’s a puppy. She’s been fabulous. I sent her home with homebaked scones this afternoon. We swap blooms and have a takeaway together every so often. You usually get more than one person in your area so can can try to see who fits best for you and your dog. I admit to be lucky and getting it right with the first person that came along.

*Gilead *Im interested to hear about your Borrow my Doggy experience.
You were fortunate with your contact. Ive managed to contact a dog walker who is coming to see me on Wednesday, but may try Borrow , I suppose its because they are not paid I feel they wont be reliable.
Im off to the private ENT bod today to get an opinion on my balance issues, I hope I can get a MRI done quickly instead of having to wait another 6 weeks for NHS Oncology, who are very good but mentally I dont want to wait that long.

Scrap that just been on 30 mile wasted trip to see ENT private consultant only to be told there is no clinic and has been an"oversight" .To say I am raging would be understating.
Also just had a letter to say Oncology appt moved forward a month. Im supposed to have a CT scan prior to seeing Oncology Bod, no appointment!
Not a good day for me