Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

I shall begin.

I'm 44, and was diagnosed with stage 4 mantle cell lymphoma in March 2020. It's treatable but incurable. I've been lucky enough to start (and finish) treatment despite Covid. I've had 6 rounds of vile chemo, followed by a stem cell transplant in September (also vile).

On Wednesday this week I shall find out how successful it's been.

I’ll be thinking of you on Wednesday

I have leukaemia (CML) which is behaving itself at present with a nice deep response to a second-line inhibitor drug, taken daily. It’s been over three years since diagnosis and a year since swop to second line (last Christmas I was off treatment as part of the switch between drugs)

Things are on even keep for me right now. Dull and uneventful is good

And it’s weeks before DD has to go back to the germ pit that is tier 4 secondary school, so I can forget about that for a while. DS is home from university, so it does feel like a nice houseful.

I won’t be going out other than to walk the dog!

Hello, I feel like a bit of a fraud, but I am 42 and 7 years ago I had a basal cell carcinoma on my eye lid. Last week I found out I have another BCC which will be cut out hopefully in January, and also an actinic keratosis (precancer) which I started topical treatment for today. Having had one BCC I've been slightly paranoid about this happening again, but even so, it is really disappointing, especially right before Christmas after what has been a terrible year for us all. I'm not worried about the BCC as it can be cut out, but the AK is on my face, very close to the site of the first BCC and the cream I am using is going to cause an immune response which will make it look red, inflamed and awful. For the first time I am grateful for being in lockdown and having online meetings.

Morning all

Not been on Mumsnet since the TTC days which are long gone. Anyhow, found a lump in my right boob in November, had a core biopsy then got the results last Thursday. Turns out I have Invasive Ductal Breast Cancer and my tumour is 44mm. Have a CT scan tonight and an MRI on Sunday to assess the stage then hopefully will have 6 sessions of chemo, an op then radiation.

I can’t work as I’m a childcare practitioner and my immune system won’t cope with children’s illnesses. I’ve done my crying and now trying to be positive that I can fight ‘Larry’. Felt I needed to name my tumour.

Morning all. Stage 3 Her+ breast cancer having 3rd chemo today!

Quick shout out to my new chemo-buddy @backformore. There's a saying: your focus is your reality. So my suggestion for today is: the treatment that could cure you begins today. Post or pm me later! I'm just packing my copious bag to go and getting my emla cream ready for the port access. Dh has gone to get a box of biscuit to take in.

So many people have ops, treatment and tests this week and welcome to new people.

Morning all. Bit of an intro, I'm undergoing surgery in Jan to remove my free loading, hitchhiking kidney tumour. I have renal cell carcinoma and I'm hoping that it's surgery and then just monitoring from then on. It was a bit of a road to diagnosis but getting there. I have 2 young kids so I just want it done. Hi to everyone.

Hi all I was diagnosed with stage 4 ovarian cancer in May. I'm 50 and have a 7 year old son who is beyond himself with Christmas excitement!. I have had 6 cycles of chemo and a full hysterectomy in October. Things have gone well and I had a good response to chemo and then the operation went well.
I have started Bevacizumab as maintenance and I'm hopeful that I will be able to pick up my life next year, covid allowing.

I, too, had a BCC, but mine was a rare aggressive one. My follow up appointments have been cancelled. Finally got one in the New Year so it wii be 15 months without a check. Tomorrow my DH (if it's not cancelled) has surgery to follow up on a biopsy that showed possible cancer cells. We are in tier 4 and it's been in the news that there are no hospital beds. He looks really ill and has lost weight. I just want the op to go ahead and get the news, good or bad. It's three weeks since we were told about the biopsy and the consultant wanted the surgery done within six weeks.

Hello. I was admitted with a bowel perforation in June, and subsequently diagnosed with Stage 2 bowel cancer. I’m 47 with 4 children aged 7-12. I’m coming to the end of chemo - 8th round starts on Boxing Day. Side effects piling up now, but at least the end is in sight! After this it’ll be 3 more months shielding then scans, scopes and - fingers crossed - surgery to reverse my stoma!
Hello to all the regulars, and welcome to any newbies. This thread has been such a source of support for me.

Thanks @InOtterNews for starting a new thread. Hello and welcome to new posters, it's very hard when you're waiting for tests or newly diagnosed but this thread is a great place to come for friendly support, advice and information.
I was dg with stage 2 ovarian cancer last year, but the tumour was grade 3 as it's carcinosarcoma, "rare and aggressive". I had a full hysterectomy and then chemo. A scan this summer showed a small lung nodule which was removed and found to be a metastasis from the ovarian tumour, I'm now having chemo again (damn it). Hoping for at least a couple of good years after I finish treatment. I'm in my 60s and live with my (female) DP.

I'm actually having chemo right now. Did you hear they're making a film about chemo nurses? Veinspotting! Boom boom!

Hi @Bloodybridget I'm also having chemo this minute. Last drug of 3, then a flush and good to go. I'd lost track of why you're having chemo again - bummer - new thread intros are good to catch up. I'm 58 (older mum) so not far behind you. Nurse was just telling me I could keep my port for years.... which of course implies more chemo in my future! Realistic, but if I do keep it will need regular flushing and really will be a constant flag that I could need chemo again any time. Then again, I don't want all the surgical faff of takin git - then back in.....

Hello, I am 44 and was diagnosed with vaginal squamous cell cancer grade 2 back in November after a smear test and colposcopy. I was sent for a CT scan afterwards as vaginal cancer is a rare primary to have and it led to a diagnosis of invasive ductal cell cancer in my breast and lymph nodes as well.

It turns out that they are not linked and I am just unlucky to have two together, I am on zoladex and anastrozole for the breast cancer as it is ER and PR + and having daily radiotherapy and weekly cisplatin chemo for the vaginal cancer.

Once I've done the chemo/radio and 4 sessions of brachytherapy, then I am having the breast cancer removed and reconstruction of both sides then on to adjuvant chemo and radiotherapy.

Welcome to regulars and newbies, pull up a comfy chair and drape yourself in a blanket.

Hi I'm awaiting test results from a gastroscopy in November with 4 biopsies taken and a ct colonoscopy. Iv had unexplained abdominal bloating nausea fatigue and pain for months.

@InOtterNews thank you for the new thread.

Evening ladies, I have recently been diagnosed with advanced ovarian cancer and will have chemo then surgery then chemo in the New Year. I am in my 50s, live alone and have an adult DD.

Hello to the regulars from the last thread and welcome to all the newbies - the thread no-one wants to join but the nicest ladies on MN are here.

Hi all,
I have breast cancer: ER/PR positive, HER negative, one main tumour, then other bits of cancer in the same breast and lymph nodes affected too. I was diagnosed in the summer and I'm currently having chemo, should finish in January, then I'll need a mastecomy, with either complete or partial removal of lymph nodes (depending how i've responded to chemo), then radiotherapy, then hormone treatment - hopefully for years and years! I'm 40 years old and have two primary aged children.
I'm still isolating from everyone at home to avoid getting ill again - going to start interacting normally after next chemo on Christmas Eve - cannot wait! And the kids will have been off school for nearly a week by then so hopefully there will be a minimum of bugs circulating for me to pick up.
Thinking of everyone as ever x

Hi to the newbies I havent been about for a while.
I was diagnosed with IDC breast cancer stage it was 11mm but I had node involvement I had 6 chemos and finished in August and 23 radiotherapies I caught covid half way through that but they carried on I was smuggled in a back door and the room was deep cleaned after I'd been in every day. I finished that in November. I had been on tamoxifen but I've changed now to zoladex injections and anastrozole. Im hoping to go back to work after Christmas if they will allow me

Hi I'm 55, and have endometrial cancer, 1a so not too bad. I'm having a hysterectomy by Robots on Christmas Eve, should be home Christmas Day. I live with my DDs 22 and 17. Who are going to look after me.
The 22 year old is taking me to and from hospital, which is 1 1/2 hours drive but is one of the best places in the country for my surgery.

And I'm described in my notes as stoical - because I'd already freaked out when I was phoned and asked to go in for an appointment at short notice and told I could bring someone with me if I wanted.

Hello! I am 44 and have DH and one DS who is eight. I found a lump in my breast in August, finally diagnosed with invasive cancer which had spread to lymph node. Had two ops - lumpectomy and scrape. Believed to be HER2- but they lost my results so can't be 100% sure. Am having six cycles of EC adjuvant chemo, followed by radiotherapy and then I think tamoxifen but not really thinking that far ahead at the moment.

Was due to have second chemo on Christmas Eve but had a call today from nurse advising to postpone by a week as my echo is in the morning of Christmas Eve and they can't guarantee the results will be ready in time and don't want to proceed without it. V relieved as it means a better Christmas with DS and DH. Actually cried when I got off the phone which made me realise how much I had been dreading Christmas Day feeling crap.

Lots of love and strength to everyone out there who needs it at this shittiest of times.

Morning all. I have a HER2 positive Breast cancer with a big lymph node found during lockdown and diagnosed on the longest day. Six months on after chemotherapy I had surgery yesterday on the shortest day. I came home last night with a high tech vacuum drain and slept well.
I seem to have qualified for the kitchen sink regime so have radiotherapy herceptin bisphosphonates and hormone blockers to look forward to. I stupidly broke my ankle half way through chemotherapy. I have decided to retire as I am 60 and am looking forward to a life of travel and cake when life resumes again and I am less crippled!

Morning all

Had my CT scan last night and the compress dye made me quite sick. Dreading the same thing happening at my MRI on Sunday. But it's one step nearer to starting the treatment to get rid of Larry.

Morning all!
Thanks for the new thread @InOtterNews!

I'm 39 and have a five-year old son. I was diagnosed with grade 2 ER/PR+ HER2- invasive ductal carcinoma in August. Had a lumpectomy and level 1 axillary clearance in mid August. The tumour was only 12 mm but had spread to 5 nodes, one of which was 15 mm, and there's also vascular invasion. So I'm doing chemo now, and radiotherapy after. Chemo is 4x dose dense EC and 4x dose dense Paclitaxel. I have one more cycle on 29 December. Radiotherapy is 3 weeks and starts on 4 January. So that means: end of active treatment exactly a month from now! (And then Zoladex, Exemestane and Alandronic Acid for years)

Happy to answer any questions about chemo, or scalp cooling, or.... whatever :)

Actually... Now that I've posted that, I actually have questions for this wonderful group:

1. How long will it take for me to feel even remotely well again after radiotherapy ends? I'm already so exhausted from chemo and I'm wondering if I'll ever have energy again...

2. I did scalp cooling and have kept some hair, bob length. But there are lots of bald patches. I'm starting to see baby hair coming through, but I have no idea what to do with regards to hair cuts, other than cut it all super short to get to an even length (which means the scalp cooling was kind of wasted). Has anyone been in this situation? Ideas?

Hi @KentishMama - I can't answer your questions but am interested in answers to both! I noticed this morning (with 5 more weekly paclitaxels to go) that my eyelashes appear to be patchily regrowing already. My delight was only slightly dented by some dark hairs also reappearing on my upper lip! (Swiftly dealt with!)
Do you mind me asking how you found the auxiliary clearance, recovery-wise? I am going to have either complete or partial node clearance at the same time as mastectomy (hopefully surgery in Feb) and thinking the axillary bit is going to be the tougher part.

@TopOfTheCliff glad surgery went well. The mere thought of 'drains' makes me feel faint! How are you managing? How long will they be in?

@Lubballoo @KentishMama I'm also going to have complete node clearance (but lumpectomy like Top) so also interested in how that went. Also - Kentish - how's your cough? I frightened a nurse last week with my cough Have added nasal spray to antihistamines and has helped.

@HumphreysCorner pain about the dye reaction - I'm not sure if it's the same dye for the MRI. Have you had an MRI? They can be a bit claustrophobic I find it helps to have a mental playlist of things to think about/visualise (I do a kind of greatist hits show of my life).

@AlbertCampion great to here you have a Xmas reprieve!

@MollyButton robot surgery then dd care sounds a very doable plan. I certainly wouldn't get any care from my dd15! (Unless I bribed her with wifi access.)

@FizzyOrange will you see your dd over Xmas?

I am riding the crest of the steroid wave today and tomorrow: baking, cleaning, shopping. Shopping high on steroids could prove expensive...