Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@Zoopet

I'm doing the same regimen. ( 3months of 3 weekly EC and then 3 months of weekly Paclitaxel and Carboplatin)

I've only done two ec so far.

What's every week of Pax and Carbo like?

Hello all. Sorry I’ve not been on for a while, I’m not doing well mentally, I’m really angry and pissed off most of the time. Sad to see new names.

My story in brief, diagnosed with stage 3a low grade ovarian cancer in 2022 aged 36. Tumours to both ovaries and 8/10 removed lymph nodes. Had total hysterectomy, 6 rounds of pax/carbo and then onto anastrozole. My CA125 Rose throughout treatment and eventually 9 months after chemo ended a PET flagged spread to my clavicle lymph node, chest nodes and some pelvic ones.

3 monthly scans now on a watch and wait. Last one in December was stable. I am finding living like this, just waiting incredibly hard. I want to rip it out. Instead I’m reduced to single handedly keeping Holland & Barrett running by buying 1335 supplements I’ve read about a month 😅

@AGreatUsername If it's any consolation, I feel the same. I no longer trust my body, every new ache and pain, is a sign of spread and I'm pig sick of it all!!!!

We can buy shares in H&B together if you like? No sooner have I bought one product, I'm onto the next!! 🙈🙈

Welcome @Zoopet
I too have adult DC who are wonderful but I hate worrying them. Lovely news about the GC! My DD2 insists I have to accept every type of treatment offered for the sake of the GC who are not born yet. She says I have to be there for them. It does seem to be that if you can tolerate the whole course of treatment given for BC then your chances of still being around in ten years are pretty good. They have lots of options now which weren’t available even ten years ago.
The decision about mastectomy versus Wide local excision is more psychological than scientific. Recurrence rate is the same apparently. With WLE there is a possibility that they don’t get everything out first time and you have to have another op to get clear margins. The cosmetic result is much better than mastectomy though. I’ve had a WLE on both sides ( two cancers) and now have nice uplifted matching boobs at 63.
Some people just want a mastectomy because they feel it gets all the tissue out which reassures them. There really isn’t a right or wrong answer.
If you had a BRCA gene then the decision might be different I suppose.
You could ring Breast Cancer Now for advice. They are very helpful.

And I HATE the three monthly crappy scan business!!

@AGreatUsername sorry to hear you are struggling. It does sound like the sword of Damocles is hanging over you. Not helpful! I am trying to forget about the BC Tumour marker Ca 15-3 that the stupid nurses measured back in the summer and it was elevated. I am getting another one done next month to see if it has settled after chemotherapy. If it is up I will be in the same position. I am so angry they measured it when the oncologist and I had decided not to. Sometimes ignorance is bliss.

@AGreatUsername sorry you are struggling. I'm also on a watch and wait 3 monthly scan thing having been turned for surgery. I'm trying so hard to not think about it but not having much success unless I bury myself in work.

@Zoopet I had WLE. I think I thought I wanted mastectomy but my surgeon was very confident that it would be a success and as I was tying myself up in knots about what kind of reconstruction to have it seemed an easier choice. The average is that in 20% of cases they need to go back in and take out more but my surgeon had a rate far lower than that so that is something you can ask your surgeon about. Mine went in via my nipple which was then re attached. You'd have to look incredibly closely at it to see the scar, she did an amazing job.

Yes I’m also watching and waiting. Now I feel left out as I haven’t bought anything from H and B, should I be taking something?

@EachandEveryone you are probably saving yourself lots of money, by not investing in H&B!

I've become a " comfort purchaser" since diagnosis. I just love having loads of little packages delivered through the week. Sad really! 🙈

@Enigma52 I also no longer trust my body and feel like it’s trying to kill me!!!
Every twinge or ache sends my anxiety sky high. I’m currently having counselling and doing yoga! I’m trying my best to calm down but oh my god it’s hard.
Not been in Holland and Barrett yet cos I go to Boots!!!

Hi and thanks for the new thread - great title!

Diagnosed May 2022 breast cancer also in lymph nodes. Weeks later finally got one-stop appointment, weeks later finally got biopsies, CT staging, MRI etc and after 2 months finally started chemo.

Her2+++, Er-0, Pr-0 so hormone completely negative unfortunately. Grade 3.
Stage 3c aka T3-N3-M0.

Multifocal with at least two cancers of around 5cm each plus high grade DCIS. Multiple cancerous lymph nodes.

Prognosis: 'Poor' (not told till almost a year later though, once I'd had a good response to chemo and so the prognosis was changed to rather more positive, but still no real clarity because I don't honestly think they know). Looking on MDAnderson it says Her+++ HR-neg regional breast cancer 5-year survival is 66% no subdivided numbers for alive but with recurrence or alive and no recurrence. They split HR-neg from ER+ in their Her2 statistics, showing that Er+ with Her2 has a very significantly higher rate of survival. In any case, regional includes people with only 1-2 lymph nodes and much smaller masses, and lower grade - so who knows.

Treatment:

(1) The toxic stuff infused or injected
EC chemo 4 cycles then 12 weeks of Paclitaxel and 18 cycles Phesgo. Did the EC and the Phesgo but only 8/12 Paclitaxel due to side effects.

(2) Surgery
full mastectomy and lymph node clearance levels I, II and III

(3) Radiotherapy
15 sessions to various areas on chest, axilla 2-4 etc

(4) Ongoing maintenance
Nothing available yet; vaccines in phase 3 trials in the US but not over here.
Zometa every 6 months for bone protection.

My staging post surgery was ypTis-ypN0 which means only DCIS left. Royal Marsden oncologist said DCIS is not cancer, so this was a pathological complete response (pCR) and a very good response to chemo indeed, hence my prognosis was improved from 'poor'. Lots of high risk factors (large tumour, hormone negative, loads of cancer in the lymph nodes originally, grade 3) but at least pCR. The pCR meant staying on Phesgo as opposed to a year of Kadcyla.

What an essay 😂So many breast cancer patients here, it's important to know who we share a diagnosis with and who actually has a completely different disease, so different treatments.

___
Regarding WLE vs mastectomy, I wasn't given the choice. With T3 huge and multifocal grade 3 hormone negative, nobody wanted to take any risks, so they chopped off / cut out everything they could. I agreed immediately. This really varies person to person depending on the size of tumour, grade of the cancer, and subtype ie which breast cancer disease. I imagine oncologists together with surgeons advise patients what they think is the best plan?

My cancer is an oncogene, but not an inherited gene like BRCA.

Hello @AGreatUsername Lovely to see you here again, but so sorry to read your news. It's such a horrible situation you're in. Waiting for the results of my recent scans nearly gave me a breakdown and that was only a matter of weeks. Longer waits must be hell. Thinking of you and sending you a big hug xxx

@LemonDrizzle10 I hear you!
I absolutely feel the same
I'm at the stage of " will I make I make it through the night", which is really unhealthy I know.

If I can get this fluid drained this week, I may start to be able to think clearly.

Amazon is my go to place!

I replied to stuff on previous thread before finding you'd all moved 😂
Been at my eldests wedding

I'm 57. Had BC in 21 - lots of family history, mine was bad luck
As is the lung cancer I had diagnosed in October. Immediately deemed stage 3c and inoperable, L lung but across mediastinum with R lung lymph node involvement
Then it spread to my brain

Brain zapped in gamma knife

Lung too advanced and extensive for radio

Had chemo and immuno but latest CT shows more lymph nodes involved
Another CT in 2 weeks to determine if this is pseudo progression from immuno - small chance but if not, the chemo isn't working

I've been medically retired

Two boys, eldest is a doctor and uncharacteristically angry and pessimistic
Youngest is at Uni - has MH issues but seems to be coping

I'm just place-holding for now as I've just realised why the old thread's so quiet but I'm off to bed ready for the 6am alarm 💤💤

Will be back after work tomorrow for an introduction.

Hope you're all doing ok & the wedding went well @Tilllly !

Hi everyone, you were all really kind when I posted on the last thread. So I hope you don't mind me joining you here while I wait for the next step. I'm 36. I'm booked in for a colonoscopy in 10 days. It's already felt like a long wait since I got the news my FIT test was positive and g.p remarked how high it had come back at (893) I'm not sure that was helpful as it keeps replaying in my mind. I'm being admitted to hospital the day before colonoscopy for bowel prep due to other health issues that need monitoring. Until then I'm in limbo not knowing what will happen afterwards.

Thanks again for being so welcoming.

@HellonHeels I started at Barts but moved to the Marsden in late '20. Barts had its plusses for sure, lots of space compared to the rat run that is the Marsden Chelsea. I didn't have many complaints with care (especially as it was covid times), but we moved house and I wanted a single oncologist with a focused research interest in my situation overseeing my care - Barts was more a grab bag of various researchers, some of whom weren't necessarily breast focused, just doing a rotation. The radiotherapy department is certainly top notch.

@lucysmam

It's been tiring but a genuinely lovely time

Lots of nice touches - like a basket of flip flops by the dance floor, Toiletries in the bathrooms, fun glow sticks and so on

Food was very nice, plenty of wine on the table 😄

DSs speech made me cry - referencing my BF who died 5 years ago, which also meant a lot to her DH and DS. And how he'd not have achieved what he had without me giving him his work ethic and moral compass, that kind of thing. So I had a little sniffle. Bastard!

@NoodlesandDoodles welcome back. Draw up a comfy chair and pour yourself a drink. Time is very elastic when ten days seems an eternity to wait for tests or results but a ten day holiday flies past.

Thanks for the new thread. I'm a stage 4 melanoma patient. Widespread tumours and started targeted therapy about a week ago

I’m also watch and wait, I didn’t realise that’s what it was called. Any changes I need to get surgery. So just waiting on results from ct scan. My moods been awful. My partner gets the brunt of it. They don’t know what my tumor is, just it’s been there for a long time. Other than that I’m feeling ok physically. Also recovering from colon cancer in august.

It's not too bad.
The staff are amazing in the daycare unit.
No sickness so far( touch wood) but more constipation and some signs of neuropathy in hands and feet.
I manage the exhaustion afterwards by pacing myself and sometimes go to bed at 7 if necessary.
Also get the wide awake steroid rush and go on shopping sprees for baby stuff on Vinted!

Hi everyone.
I'm 34 (35 next week) three small children. Diagnosed November 23 with ILC ++- grade 2. Four small tumours and three enlarged nodes. I had a lumpectomy plus ALC in January which showed I had a further 28 test positive.
I start chemo tomorrow, 8 condensed rounds, along with hormone therapy, then rads.
My oncologist has been very reassuring that I am on track for a full cure and that, as she has said, I should be able to go and live the rest of my life without experiencing this again, but my mental health is in absolute shreds and although I have been positive for a good chunk of time, every time I approach treatment I end up spiralling terribly. I don't know what chemo I'm on, trying to take it in but I feel like at this point my brain is just shouting "no more, that's enough!" I sailed through the surgery but this is daunting.
I probably won't be a regular poster as I struggle to keep up with the conversation but I will lurk and try to contribute if I can.

@Zoopet you need magic glasses as recommended by the look good feel good lady at McMillans. Loads on Amazon

Welcome @youdontneedtopoo and good luck starting chemo. I always say don’t worry about being brave or strong. Just turn up and the chemo nurses will take care of everything. I had the dose dense treatment for my second cancer. You will probably get EC for four rounds then Paclitaxel for the other four. The EC is the red one that they shoot in fairly fast and it doesn’t take that long. The Paclitaxel is the slow infusion, and if you get any reactions they go slower and slower. Sometimes it is the other way round but they are Radical Curative treatment. It comforted me when I read that. Give me the strongest stuff you can and see off all the bastard cells that might be floating around.
I hope you have lots of help with your littlies. You will want to spend some time flopped on the sofa doing nothing so let your friends help with play dates and school runs.
Come back and tell us how you are getting on if you have the energy.

The veranda roof has been trying to lift off all night here at Tops Towers. We haven’t slept much due to the banging. Gale is still raging so I may stay home and avoid fallen trees in the lanes.