Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

had a routine mammogram beginning of April. Recall letter received end of April with follow up and biopsy over 2 months after initial mammogram. Confirmed cancer but still waiting for classification.
Waiting without treatment is so scary

Solidarity Lili. Checking in. The initial wait is one of the horriblist parts.

I'm done with Paclitaxol now and on to A/C in two weeks. Unironically loving my shaved head. Very refreshing in the hot weather!

Feeling very guilty today as my portacath didn't work and they had to try cannula three painful times. I ended up being so rude to the lovely nurses. Had a big long cry and rant at the world. After that just grunted at them and wouldn't make any sort of eye contact. When they asked me if I was okay to go ahead I said/grunted 'I don't exactly have a fucking choice do I?' I've been so calm and 'coping so well' for weeks and weeks and it all came out. Breaking point was that I had lost my beanie.

Apologised and will bring in some fancy biscuits next time or summin. I hope they understood I wasn't angry at them, just the situation.

@LiliJilliBobs the wait is awful but hopefully you will get answers soon

@FruityCider I’m sure the nurses are used to it and understand, biscuits a good idea! Im
fully expecting to lose my shit at some point !

Wish we hadn’t lost the thread 96.
ive learned so much and got so much support from this feed - where has everyone gone?

@LiliJilliBobs You haven’t lost Cancer Thread 96, it has just gone a bit quiet. Several of the regular posters have recently finished active treatment and are probably stepping back a bit from the Cancer thread as they regroup. That is why we set up the Recovery Thread.
Thread 96 wasn’t full, it was at 756 posts, so you may have confused a few people by starting a new one. Things will pick up again, sadly there will always be a stream of folks having tests, getting a diagnosis or starting the endurance test that is cancer treatment.

@FruityCider what a pain about your portacath! Mine blocked once and had to be unclogged with some special clot buster. Has it been sorted yet?

I am on the verge of my fifth anniversary of BC diagnosis no 1, which I shall celebrate cheerfully! It will be the third anniversary of BC diagnosis no 2 in August. I have had almost every mode of treatment available on the NHS “ just to be on the safe side” so ask away if you have any questions. It’s a long slog getting to the other side but I think I am pretty much through!

They are going to schedule a reinsertion. Apparently the tube has been knocked in to the wrong place. Got a week off from chemo next week as I've finished paclitaxol and start A/C week after that. I optimistically booked a hol in Scotland Wednesday - Sunday so knowing my luck I'll have to cancel that! 😭

So happy for you in your journey!

@FruityCider do you have a date yet?

Next Monday after the trip, thank fuck! Had a massive wobble during the first surgery as didn't realise how claustrophobic it would be. Hoping I stay stronger this time!

@FruityCider I learned to do yoga breathing whenever somebody was doing something unpleasant to me. It gets you through most things!

@LiliJilliBobs have you got an appointment to go and hear what is in store for you? Things will seem a lot easier after that, as once you have a plan it all becomes doable. I was shocked to be told I wouldn’t be able to work during treatment, but it was the right advice as I started chemotherapy a week later.

Hello again, I’d jumped over to the recovery thread as I’d finished chemo & surgery and found this thread a bit triggering (nobodies fault just that I wasn’t in the throes of chemo hell and wanted to leave it all behind) but I’m starting radiotherapy tomorrow after a six month wait. My MP even raised the issue of cancer care on my behalf in the Commons it’s been so long. Luckily my pathology post mastectomy was clear meaning that radiotherapy is to prevent reaccurence and isn’t my primary treatment.

However still feeling crap about radiotherapy tomorrow, honestly when does it stop!?

Glad you’re through chemo and surgery Littlecaf. Good luck with your radiotherapy tomorrow. I’m hoping to see my oncologist tomorrow for my diagnosis after my MRI, and treatment plan

Just over halfway through radiotherapy now and with only a little tiredness and tenderness it feels like a doddle compared to chemo, which seems such a strange thing to say.

I hope those new to this thread find it as supportive as I did, the waiting is endless and scary but once you get going you at least feel as though you've made progress.

@Littlecaf The radiotherapy is very straightforward (or it has been for me), nothing touches you, it's quick and I have found the side effects compared to chemo are minimal. The most annoying thing is to have to scrub off the pen marks every night! I shall be over on the Great Recovery thread shortly, last radio is on 1st July and then that's the end of 10 months of appointments and treatment. Or at least the end of the worst of it!

I’m booked in for surgery on in 2 weeks time, having a lumpectomy, and some lymph nodes removed for analysis just to be doubly sure it’s confined to my breast 🤞
lobular cancer stage 2

I asked for a mastectomy but the surgeon believes a lumpectomy it’s less trauma to my body and I don’t need it.

So providing the lumpectomy comes back with clear cancer free cell margins around it and my lymph nodes are clear I will have a few weeks post surgery recovery and then straight into radiotherapy.

Worst case scenario
If there is any sign of cancer in the areas they remove, I’ll be back in for more surgery for either more cell removal or a mastectomy.
If it’s in my lymph nodes it may mean chemo, tbh I’m not sure what they do as lobular cancer doesn’t respond well to chemotherapy.

Ooooh - delighted to find this thread! Anyone else with bowel cancer?

Got my breast cancer diagnosis today. IDC, hormone +ve, HER2 -ve. Grade 1, no evidence of spread to lymph nodes. Still waiting for biopsy results from a second area which will affect likelihood of mastectomy over lumpectomy. If it’s clear then I’ll need an MRI of the breast before surgery. Booked in for surgery mid-July. Feel much better better having a definitive answer after the torturous 2 weeks of waiting.

Welcome @Jilllybean to the thread nobody wants to be on. There are folks with bowel cancer here but most have finished active treatment and are regrouping. I’m sure somebody will pop up soon. It’s quite a comfort when you realise there are folks ahead of you who have been through the gruelling marathon and come out the other side. Do you have a treatment plan? Have you had surgery?

@SummerShimmer you are absolutely right that the waiting is the worst bit I was shocked to be told that. Will you need chemotherapy? I suppose it will depend on pathology results.

Today is my fifth anniversary of diagnosis no 1 which was a triple positive BC with lymph node spread. I dived straight in to FEC-T chemo with Phesgo and had a complete response to treatment. My odds improve having made it to five years without a recurrence. 🥳🥳🥳

Sending best wishes to all

Hi there, TopOfTheCliff - I'm currently recovering from surgery for a colostomy, and just learning how to manage the bag. The stoma is to enable five weeks of daily radiotherapy, prior to having the lump removed in a few months.

I'm so impressed with the way the NHS sprang into action, once I was diagnosed.

Another here who has graduated from active treatment popping in to say Keep Going to all of you wonderful people in the club no one wants to be in.

My situation was very like @SummerShimmer ’s. IDC hormone positive, no nodes.

I took the scenic route by ghost train and ended up having 3 ops and then chemo. Now gradually getting back to work and booking up some breaks. Just had a clear first annual mammogram. Major relief!

I’ve just been reading about the poor young girl Paloma who died at 23 of Non Hodgkin’s lymphoma because her mother the Natural Nurse persuaded her not to have chemotherapy. It’s such a sad story of coercion and misinformation. I had a beautiful cousin who refused chemotherapy and died at 35 because she didn’t want to lose her hair. It makes me grateful for my lovely oncology team who explained and reassured and cheered me through all my treatment. If you are being advised to have chemotherapy it’s because your team know the benefit outweighs the risks and they want you to get better! I think maybe I should avoid reading stories like that.

i occasionally pop in on this thread and wanted to wave hello, @TopOfTheCliffas I remember you from when I was on here. I am now coming up to five years post diagnosis and four years post treatment (not counting Tamoxifen). I hope you are doing well!

I also read that awful story this morning. Absolutely tragic - I suspect the mum must be mentally ill to do that to her daughter. Her poor brothers must be beside themselves.

For those still in the thick of it, I’m sending you love. It’s a fucking shit journey to be on, but these threads are fantastic support.

The only things certain for me are surgery and hormone therapy. Anything else will be determined by the pathology after surgery I think. Got my MRI this week (before the results of the 2nd biopsy) - also very impressed with the speed at which the pathway works once you are referred. The NHS may be broken but the cancer part seems to be pretty excellent.

Welcome to those new arrivals. I'm sure you will find lots of comfort and useful information here. I definitely have.

I wanted to ask about further tests. I have literally had my initial mammogram, ultrasound and biopsies. I have had no further tests and there have been no mention of further tests. I am still waiting for my treatment plan though.

I've seen lots of people mention CT scans, MRI's etc. Should I be pushing for these ?

@AlwaysALargeSauvignonBlanc I didn't have to ask for any tests, as soon as I saw the consultant it was all systems go with MRI's and CT's etc. Assuming you have a face to face appt fairly soon you can ask about them then, if they're not mentioned. I was given my consultant's secretary's phone number and if I had a query was able to ring and check there. Sympathies on the waiting, it's the worst.

@AlwaysALargeSauvignonBlanc they will give you them if you need them, getting diagnosed is a bit of a well trodden path - if it’s x it’s y, if it’s z it’s a, kind of thing. But do ask your medical team if you have any questions. I found the breast care nurses are generally happy to explain why you have been offered on thing rather than another. Sending luck to you all!

I echo what @SummerShimmer said about diagnosis and starting the actual treatment. It all happened quite quickly - initial breast centre tests mid June 2024, diagnosis early July and chemo started last week of July 2025. End of chemo Nov 2024, mastectomy Dec 2024, pathology back Jan 2025.

Amazingly my pathology was clear (I had neo adjunctive chemo - ie chemo before surgery as my breast cancer was HER2+ so they want to get herceptin/phesgo in you ASAP as it’s a wonder drug) so onto waiting for recurrence preventative radiotherapy. For 6 months. That bit hasn’t been so good but that’s where my NHS Trust is right now.

@AlwaysALargeSauvignonBlanc I’m having an MRI to determine whether I can get away with a lumpectomy rather than a mastectomy. It was only mentioned at my appt to get the initial results.