Cancer Support thread #78 - Newbies welcome

[MrsPnut]

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

@Miava sorry about the headaches but not sure what else to suggest short-term especially as not clear how they are actually being caused.

@Lubballoo SO jealous of your cleaner!! But sorry about the cording - hope physio can sort that out. Did you have a complete node clearance?

Nice one @Acinonyx2, incognito for the win! My eyebrows have just started growing back and I keep being surprised when I see them in the mirror. It's not me with a cleaner, sadly, though DH is doing an excellent job of keeping on top of things. What I mainly need is a tidier

Posted too soon! Yes, my second op was complete node clearance and 3 weeks later I have a seroma (which feels huge but probably isn't and which is determinedly not going away despite being drained twice) and now this cording

After my first op (mastectomy and targeted removal of 3 nodes) I didn't have either issue but 2nd op was only 3 weeks later so maybe it's a bit cumulative?!

@Lubballoo these seem to be issues associated with node clearance in particular unfortunately (especially the cording).

Hi all thought I would report back on my first session at Maggies centre. Firstly the building and atmosphere just felt calm and safe. There were several people there, all socially distanced, and all wearing masks. I was welcomed and offered a hot drink. My therapist was running late so my inital session ended up only being about 40 mins. However I think this was because this was an initial session to see where we go from here. I basically just bawled for the whole time and just said whatever was in my head. Don't know how the poor woman followed my ramblings but she seemed to. To be honest just the release of that tension has helped a bit, I hadn't realised how much I was holding in. Unfortunately she is off for a wee while so my next session isn't until the 20th. Maggies is however open to just pop into, to sit quieltly, chat or just have a cup of tea. I think I may well use that space to cry if I need to, its hard to get somewhere private just to let it all out. If any of you have a Maggies centre near by I would recommend them for yourselves and family members. I think there are 23 centres across the country and their services are free. I hope @balkanscot you find your experience as positive on the 12th.x

@Anne1958 and @thereisonlyoneofme thank you both for your reassuring stories, I do feel a lot better for knowing what to expect. I think a lot of my anxiety stems from lack of information - all the surgeon said at my 10 minute consultation which included a really rough examination was, 'you'll need a hysterectomy and an omentectomy' and that was it! I hear you on the noise in hospital @thereisonlyone, that is my experience so far too, the nights are as noisy as the days!

@Acinonyx2 I am laughing at you pulling off your disguise! My eyebrows are now only about 2cm wide, all the parts at the extremities have fallen out but the remainders are still as bushy as before, very strange!

@Top I read the article you mentioned last night and found it to be a very insightful take on it all. Your friends sounds lovely and you should bask in their compliments. I think you sound like a fabulous GP too.

I have had a call from the hospital about my filter fitting tomorrow. This was to tell me my Covid test was negative and to see if I had been isolating since my test on Monday. I said that I had and then the nurse asked, 'have you left the country since Monday?' .

Hello! Saw oncologist today and he says the thickening spotted on the CT is nothing to worry about - he was quite cross that they mentioned it to me because he said it caused unnecessary anxiety. But the liver thing is slightly more concerning - my pre-chemo CT showed my liver being normal, so it has become enlarged in the past three months, which obviously might be down to the chemo. I don't think he's thinking a spread of cancer, as as @HumphreysCorner says it is unlikely during chemo, but there is something weird there.

We also discussed next steps after my last chemo on Friday. I'm looking at 15 days of radiotherapy and five years of Tamoxifen. He's also given me a "phased return" sick note which I am stressing out about. Radiotherapy hospital is over an hour away so realistically I am going to be out of the house for at least 3 hours a day. And I have to drop off and pick up DS from school. My working day is usually five hours long - not sure how I am going to manage radiotherapy plus work every day - does anyone have any experience of how manageable this is?

@Miava much sympathy about the headaches. It might sound a bit weird but when I have migraines I always find Coke helps - something about the caffeine widening the blood vessels. Might be worth a go?

@AlbertCampion good news on the thickened spot on your CT, I think some of these things are 'interesting' to the medics but irrelevant in the big scheme of things and give horrendous anxiety to us. Sorry I am not familiar with the timetable for radiotherapy, but is yours every day for 3 weeks? Could you ring his secretary and request the phased return to start after this time? Perhaps your GP could sign you off completely for the radiotherapy time as this would count as 'cancer treatment' which I believe you are entitled to have as complete sick leave. Apologies if I am way off.

Oooh thank you @FizzyOrange - that's really good to know. I will definitely look into that as I think the whole idea of returning to work while starting radiotherapy is making me very stressed!

Just had a call from the cancer unit to say that my blood test today showed that my liver function is out, so I need to go back for another one tomorrow. I'm starting to get a bit concerned about it.

@AlbertCampion Great news about the thickening spot! Hopefully even if something is out with your liver it can be easily addressed - will keep everything crossed for you.

Had to smile at the last-minute eyebrow pencil! I'd never used one in my life before chemo, and it's opened up a whole new world to me. Still trying to get the hang of the microblading pencil, but I'm actually quite enjoying being able to shape my brows to my liking now without having to go in for threading/waxing. Just need to steer the right side of circus clown...

@backformore I have bought my first ever eyebrow pencil recently too! I have always plucked mine so thought they would drop out with my hair but the middle bits are firmly hanging on. DD25 used my pencil to do my brows the other evening and it took ages, I really don't have that patience, but they did look much more professional than my efforts which make my brows look so 'dense'.

@thereisonlyoneofme
So glad to hear that you're home. Is ddog back with you yet? How are you coping with everyday life?

I remember a lot of trapped wind with my ovarian op. Bowels tend to go into a massive sulk. Hate being pushed around during surgery. As always, I recommend glycerine suppositories, over the counter in a pharmacy. Follow the directions and don't skip the lying down part

Which bits were your tumours attached to? Sounds as if you've avoided a colostomy. Was it keyhole surgery? What comes next for you?

@FizzyOrange Debulking sounds horrific, but they're only taking things away that you don't need, not having to repair essential organs and make sure they still work. Lots of us found the recovery surprisingly easy. It was for me, compared with colon surgery.

Wishing you all the best!

@FizzyOrange I get the dense look, too! Definitely a developing skill 😂

@MrsPnut - have you tried Marks? I noticed the last time I was in the bra section they had quite a wide choice in the "no wire do up the front, it would work for post mastectomy" range in a lot of larger sizes. I haven't had a mastectomy/lumpectomy but I did have a reduction a long time ago and remember having to shop for something similar (and it was a pain then too!)

Evening ladies. I’ve been a long time lurker on here. Stage 2, Grade 3 hormone positive breast cancer. Had a lumpectomy in February and back for another op in March to clear margins and sort out a large hematoma. They sent the tumour off for genome sequencing and I found out yesterday that I shouldn’t need chemo - on the one hand a huge relief but also can’t help thinking I’ve got off too easily.
In terms of bras my bcn recommended the Amoena website. You ladies have been invaluable in getting me through the last few months and I am in awe of all of you. Thank you. .

Oh to have eyebrows as mine sadly disappeared years ago for no reason. X

Hello ladies. Can I come back and sit with you for a bit?

I’ve posted on and off over the last couple of years, but haven’t introduced myself on this thread.

In 2019 I was diagnosed with a malignant melanoma on my vulva, so I had half my vulva removed and skin grafted. Histology showed non-invasive melanoma at the margins, so I’ve been very carefully monitored and had 3 further ops to remove suspicious areas of skin - all of which thankfully have been non-invasive.

I have a brain MRI and CT PET every 6 months to check I'm clear.

Over the last couple of weeks I’ve been suffering from a pain which can’t decide if it’s in my back or in my stomach- it’s worse in the night and I haven’t slept since 5am for the last couple of weeks.

I know there’s lots of innocent things it could be but they seem less convincing at 5am!

I’ve spoken to my oncologist and she’s pulled my monitoring scans forward a month, so head MRI today and PET on Tuesday, so this time next week I’ll know what I’m dealing with. It will no doubt turn out to be trapped wind!

I’ve been lurking so I know lots of you are going through a tough time at the moment. Chemo doesn’t do anything for melanoma so I’ve never had to suffer that - I’m sorry you have to.

@Anne1958 I laughed out loud at your breaking wind story and had to explain to dh why I was laughing! I have had what I call 'chemo wind' which can be somewhat copious and is also qualitatively different - I would describe it as 'flabby'.

This one was more along the lines of shards of glass and I’m only thankful my knickers didn’t resemble a doily when I took them of later.

So, it seems I have Mucinous ovarian cancer which is a very rare subtype of a rare type of cancer. There’s not much known about it and there’s not much out there to read up on. It stems from the most common type of ovarian cancer which is epithelial and is Type 1. It can also be low or high grade and I’ve not worked out which one it is though I still suspect low grade.

In the end I went over my report myself as I felt that doing this was nothing compared to what people here are managing to do on a daily basis but it was still very scary and my heart is still beating quite a bit faster than usual. I’m glad I did it though as I’ve got to handle the anxiety going forward lest I’m on medication forever.

I spent a lot of my earlier days in situations where people would say ‘trust that to happen to you’ and I can just imagine my granny saying to me right now - lassie, trust you. 🤣

@Acinonyx2 I had an episode during a work Zoom meeting. I put on my wig at a weird angle and kept trying to subtly readjust it during the meeting. As you can imagine, subtle it wasn’t. As for the eyebrows, they have kind of grown back but very patchy. There’s hair at each end but almost nothing in the middle. So I still tend to whip up the eyebrow pencil when I go out. I am still wearing my woolly hats when outside, as my new hair still screams “CANCER PATIENT ALERT”. I know I shouldn’t be bothered about it but I am.

@AlbertCampion great news about the thickening (so, so hoping I get the same words uttered by my consultant re: “old sclerotic injury”). I hope your liver was just in a temporary strop. Keeping my fingers crossed!

@Miava has the headache eased off a bit?

@Anne1958 hand hold! Even though your type of cancer seems to be rare it sounds by your post it’s in early stages and hopefully that means it is very treatable. Has your medical team mentioned a treatment plan yet?

@Alittlewornout your first Maggie’s experience sounds very positive and encouraging. I too expect to be bawling my eyes out on 12 April but I guess that’s the whole point, to let it all out to someone who is trained to listen, rather than bawling my eyes out for the 1000th time to my DH.

I have a bit of a sore muscle near my armpit (where it borders the shoulder blade) on the side of the lymph node removal. Doesn’t hurt when I am not using the muscle but feels tender, sort of a bruised feeling when I paw at it. Could still be feeling the side effects of radiotherapy, maybe (it has been 4 weeks and counting since it finished).

@Toofaroutallmylife keeping my fingers & everything else crossed for favourable scans next week! Does the pain go away during the day? I find that any time between 1:00 and 6:00 am is the witching hour for my brain, if I am awake for any reason. Total psychological pits!

@cupcakesandcoffee wow, so, so, great you don’t need any further treatment!

I am still being completely obsessed with any twinge, despite the onc. saying “Don’t obsess!” Yep, like it’s SO easy not to obsess.

I have banned myself from opening any news articles on anyone suffering from/dying from cancer. I used to obsessively open them up all the time. Well, no more! And of course, Googling has also been banned. See how long it lasts!

@Anne1958 hand hold! Even though your type of cancer seems to be rare it sounds by your post it’s in early stages and hopefully that means it is very treatable. Has your medical team mentioned a treatment plan yet

Balkan, thank you. I had the major debulking and going forward it’s a case of watch and wait for 5 years as far as treatment is concerned.

And if it really-occurs, the chance is about 10 percent, then there’s not much available by way of treatments but strangely enough very often it’s treated with bowel cancer chemotherapy.

I knew I had a rare cancer when I thought it was low grade serous and I felt positive despite knowing if it came back it’s much harder to treat than high grade. Today however has kind of knocked me for 6 a bit and I feel in a worse off situation than I have done these last 4 months.

@Anne1958

Early stage Mucinous Ovarian Cancer has an excellent prognosis.

I think you should copy this out in large fluorescent letters and stick it on your fridge. You can't get an earlier stage than 1a.

I'm v interested in your case because 6 years ago I was diagnosed with a Mucinous Borderline Ovarian tumour. (MBOT) 1c. That means the cells weren't normal, but not quite as abnormal as cancer cells.

You're not in a worse-off situation at all. It's excellent news, like your prognosis! Hats off to you for summoning up the courage to read the report. Now it's time to celebrate and get on with the rest of your life. Wahey!!!

OK so I am back from a long day waiting around for my hospital appts. Firstly my MRI shows almost no change from the one I did 3 cycles ago. They're all fairly cheerful about it - but it is clearly a partial response and that's that.

Surgery will be lumpectomy and targeted node clearance but no date yet as my actual surgeon is only just coming back to work. So surgery looks like it will be 2-3 weeks later than ideal.

Given the MRI results I already knew what my oncologist had in store for me: 10 months further chemo after surgery - Kadcyla. I know there are a few posters lurking around who have taken/are taking this and I'd love to hear how that's gone as I've had a pretty grim time on previous chemo. I'm expecting this one to be a kind of half-way house in terms of side effects - but would like to hear from people first-hand.

Since surgery is running late I'll also go back on Herceptin/Perjeta from next week.

I knew this was a likely outcome so I'm not shocked - just absorbing the reality of it. 10 more **ing months of IV chemo. I've read the papers, I know the logic. It's very new to put patients in my position on this drug - in fact I will be her first one