Cancer support thread #82

[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

A CT won't be claustrophobic - those are quite open except for the 20 seconds you need to be parked under the spinning scanner bit which is about the width of a car tyre and your head and most of your body will be poking out. An MRI is where you are in the tube completely on your back for quite sometime and IS rather claustrophobic (unless its a breast MRI and then you are on your front).

Radiotherapy is similarly open - you lay there on an open gurney and the machine moves around you, zooming in closer to your breast. It takes about 30 seconds total.

How claustrophobic are you? Can your GP get you a lorazepam or something else to mellow you out to do the planning/radiotherapy?

I am with @HerbalRefreshment it's not claustrophobic at all. It's like a halo and your body is poking out of it (you are laying on a table) You keep your hands up by your head and they might pop some dye through a cannula to light you up.
It's not a tunnel.
I just see these awful things we have to do as necessary evils to stay alive and as well as we can be (sorry if this upsets anyone)
I regularly feel like I don't want to play ball.
You will be ok.
Hugs

Completely unrelated and I didn't want to hijack but I went to the doctors on Friday as my right lung feels heavy. Not painful just hard work to get enough air. Laboured I guess. Have a dry cough and constantly clearing my throat.
It wasn't my normal GP and he was fantastic.
Turns out I have aspirating pneumonia probably caused by my vocal chord being frozen. Little bits of food and liquid have go into my lung.
Have given me super strength antibiotics and said to go into hospital if any worse (it's not just feel heavy) Took my bloods etc.
Dp has gone out today and tonight which I don't mind but has just text me to say our friends are having a bbq tomorrow..... (deep sigh) which I won't want to go to as am bloody knackered.....

Hi, thanks v much for your replies-r appreciated. However, I am v v v claustrophobic. I had to have a CT scan 3 months ago, which scanned my lower body (only to my waist). They had to abandon it after a minute, as it set me off in a panic. This new one is for five minutes and it comes right up to my neck. It’s causing me more distress than the diagnosis itself!! Yes, have tried out lorazepam, but not sure if 2mg will work and bc nurse not being at all supportive or helpful.

Hi @Tryhardermum and welcome to the thread nobody wants to join. It’s very friendly and supportive here. Sorry you need treatment for BC and that is stressing you already. I would say that my experience of CT scans and radiotherapy were not at all enclosed or claustrophobic and I am a bit twitchy about anything like that. The CT scanner is like a doughnut you are rolled through, the ends are open and you have plenty of light and space. The radiotherapy machine is similar. You lie on an open couch and the machines whizz about you but you are not enclosed. Could you maybe ask for a tour of the department so you can see what is involved? It is quite normal to be very scared but the Staff are ( usually) very kind and reassuring and want to help you get through it. Have you got a BCN you can chat to about it all? They should be your ally in all this too. What is your big fear? Ask away as someone here will probably know about it.

Best wishes
Top

Hello @Tryhardermum and welcome to the support thread that none of us want to be on!
I'm sorry that this has happened to you. What you're discovering is that breast cancer treatment options are fairly narrow but please be rest assured that however it may look a BC unit's objective is to help you the best way it can. I was also very reluctant to accept radiotherapy as an option and was told that if I refused it then a mastectomy was the only option. I decided to accept radiotherapy with a lumpectomy and node removal but as it is my HER2+ cancer tumour doubled in size over the month between diagnosis and surgery so I am now having chemo and Herceptin first and will have radiotherapy after.
I have previously had a CT scan and it was in an open room and not remotely closed in. Please listen to the others on here who have been through all that you are facing - I have always found my fellow travellers to be supportive and full of good advice and warmth. This is a scary journey that you are embarking on and I hope that you have plenty of support around you. Please stick with us and always feel free to ask for advice and information and let us know how you are doing.

@mowly77 Sorry to hear that the consultant at the Marsden is now backtracking but hopefully you got your transfusion and have been able to get to your gig. I had chemo yesterday and today I feel rougher than I usually do on day 2 so I will miss seeing My Chemical Romance tomorrow which I am so gutted about because I've only been waiting three years for it to happen. I will gladly wave DP and the DC off tomorrow morning and sit around grumpily for a bit but I will miss other events too but it is what it is.

Hi, Topofthecliff, thanks for your kind words. I’m afraid my bc nurse isn’t v nice. She’s been a bit of a cow, actually, which has heightened my anxiety about everything to do with the treatment. I’ve had to fight to get any support from the bc team. In fact, I overheard her say that she couldn’t care less about me and that I should go private! Mainly cos I challenged her in front of the surgeon on q serious wrong info she gave me. When the surgeon left the room, she trashed him and said of CT scans, ‘What does he know!’ As for my claustrophobia, I can’t have anything over or by the top half of my body. And no health professional seems respect what is a long term health condition. They think that holding my hand and talking to me like I am a child or pet will do the trick!

@Tryhardermum just sending support & echoing what others say. CT scan is not enclosed, & very easy. But asking to go see it & look is a really good idea. & if you find your BC nurse unsupportive ask for another one! I had a falling out with mine in the early stages after diagnosis as was very stressed & no one was helping me — they subtly gave me another one … now the original one is back but she is more supportive. I personally would ask your GP for diazepam as you have a real phobia and it might help calm you. I’m so sorry you’re going through all this.

yeah after five hours wasted in hospital I didn’t actually need a blood transfusion so I just feel shite because I have cancer. & as a PP said the co morbidity of having cold agglutinins. But I just know I haven’t had enough chemo or any other treatment and my system is really struggling. I have new pains and weird symptoms & I’m certain it’s cancer spreading. obviously I really wish this is just paranoia, it may be. I won’t know as no plans to scan me until 12 chemos I think unless I kick up a fuss. I’m in a dark place today. I am sick to death of my oncologist sounding like I am an inconvenience to her. Got a copy of her last letter about a phone conversation we had after the Marsden & it starts out “xx had a lot of questions following her appointment at the Marsden …” well of course I fucking did! This is MY LIFE EXPECTANCY we are talking about the actual period of time I have left on this earth to be with DD and my loved ones.

I think I need to get back on anti depressants. I can’t go on like this. I need to function while I am well enough to. Has anyone else gone down the AD route? Did they help at all?

Honestly I just want my mind wiped of the fact I have metastatic breast cancer but that won’t ever happen so what to do in the meantime

@Tryhardermum jesus just seen your next reply. I can’t believe she said that - complain about her via PALS & ask for a different nurse. You are entitled to support from the hospital and the team.

How’s your GP? That can make all the difference if you do have a sympathetic one in terms of emotional support and prescribing. Mine’s been very good since diagnosis & schedules phone appointments to check on me without me asking. She prescribed sleeping pills and pain relief without the usual faff too.

So sorry you are so depressed Mowly. I have not tried ADs as not worked for me in past and so many meds anyway but they may be worth trying esp if have worked for you before. I have had my steroids halved and that has made me not depressed again and anxiety is still bad but not off the scale so that has helped me.

Try sorry you have cancer. Its so hard when you are anxious. I have found the cancer treatment is very physical based and no thought to emotions and expected to do everything alone and be positive and not react. Macmillan do provide counselling. Ct did not bother me too much as open, mri i am not keen on but breast one is not so bad as its head out and music on. I just see it as something I have to go through to save my life. It was that or dying in 2 years if I left it untreated. I can panic or cry but I get them to carry on. I wish you did not have to go alone. Some people take meds.

@Tryhardermum - you may need to do a few things here as it sounds like this is quite a situation. If you have tried calming drugs before then there must be a record of your situation via your GP, no? Can they write a letter to the hospital indicating how serious your claustrophobia is as well as prescribe something stronger? I imagine the nurses hear "im claustrophobic" all the time but its not at all like this, hence why they are brushing you off. In the meantime, complain to PALS and see if you can get a new BCN assigned.

Do you practice deep breathing and meditation? I mean I know that is thrown around these days with abandon as the solution to everything from a hangnail to cancer, but they are useful fall back coping skills. I started to panic in an MRI once and went to focused breathing to deal with it. Do you have any other coping strategies in general for your claustrophobia you can adapt to get this done?

However, if you absolutely cannot manage the CT scan then you may just have to have the mastectomy. They need the scanning information that scan provides to plan the radiation and place the tattoos. Its a very targeted and precise dose to lessen potential future radiation damage to healthy parts of the body. Its not that they are being adamant about the CT for kicks, its because there really is no other imaging modality available (anywhere, not just NHS) at this moment in time.

Unfortunately with cancer, we have to adapt to its game until we can either get rid of it completely or (for some of us) get it to sit down and shut up for a little bit. It sucks to have to give that much control to a ball of fucked-up cells, but the best way to get some control back is to be brave and do what you need to do, however you need to do it, to get through this process.

Went shopping yesterday at John Lewis to get a halfway decent bathing suit for this upcoming beach holiday and oh god. Full length mirrors and harsh strip lighting were never my friends before but now I wanted to sit down and cry. The varicose veins in my left lower leg, the half a cup size smaller breast, the stomach scar, the lack of ANY kind of waist, the repositioned belly button that kinda looks like a gunshot wound still, the menopausal weight gain. I felt like such a hideous tub and 20 years older than I am. And of course there were a bunch of 60+ yr old French women shopping for mother of the bride/groom dresses and sure they had a bit of a belly but otherwise were looking fabulous in size 10 or 8.

I did find something at least, and there are some really great LONG floaty dresses out there I will be chasing in the sales, but I felt really frustrated at my body turning out like this after years of being a competitive athlete and being active, right up until diagnosis. Losing 5-8 kgs to get me back to my pre diagnosis weight would be nice and give me some room in case I hit another bad GI patch. At least I could maybe wear normal trousers and shorts!

Sorry it was difficult to see the mirrors Herbal I get that as well, feels very vain, but pre cancer I had pretty long hair, thin and in good shape. Now I look at myself and see 1 chopped off breast, panda eyes from chemo tiredness, a rounder face from steroids, my hair now at ear length and a bit patchy from chemo but some saved thanks to frozen peas and bruises and yes it can be depressing especially when it seems to keep adding a thing. I guess its all it a good cause but just another layer of rubbish. I find nice clothes help a bit, initially I thought I looked trashed I will just wear hoodies and leggings but that made it worse.

@HerbalRefreshment I had such a job trying to find a swimming costume for our hol we're currently on as I'm flat on one side but large on the remaining side, not to mention how out of shape I've got from not exercising due to the lockdown then cancer. In the end I got a cozzie from ebay that was from good old M&S. I've been fairly stoic but yesterday I had a small meltdown getting ready to go to the pool for the first-time post-mastectomy. It was the waterproof prosthesis that did it. The absurdity of the fact my left boob was now effectively a modified bath scrunchie broke me! Of course, in actuality it was fine!

@MothralovesGojira So gutted for you having to miss the concert. We've got tickets for Nine Inch Nails at the Eden Project in a couple of weeks & I'm worried I won't have the stamina for it. I did ask if I could get into the disabled area but rightly so it's for wheelchair users only. They have what they call a "relaxed viewing area" with steps you can sit on so we'll head for that & hope it's a decent spot.

@Silkierabbit Loving the kitten pics! I'm missing our kits even though we're only away for a week.

@TopOfTheCliff you're so far away! Amazing result for the fundraising! I've hired an electric bike for our week away as I was worried about my energy levels - it's awesome!

@Tryhardermum
I'm sorry that you're finding this so hard and that your BCN has been so awful. Please see if you can be allocated a different one - I never had the same one twice and I've had very little to do with BC unit once I was post surgery and handed over to oncology.
As others, like Herbal have said on here, you have some very difficult decisions to make if you want to survive. In my darkest thoughts I sometimes wish that I'd walked out of the hospital and just allowed nature to take it's course because then I wouldn't have to be feeling so ill and making these decisions on my future health. It is indescribably so entrapping and horrifying but we just all carry on as we have so much to lose if we don't. If I was much older (I'm mid 50's) and didn't have the responsibility of a ND/medically dependant teenager then I would probably make different decisions but I keep going and constantly surprise myself on how strong I actually am. I have an 83% chance of surviving the next ten years on my current plan which is great but my family need me so I do everything that the hospital suggest/recommend despite how much I hate it.
The other thing that you need to appreciate is that the hospital go on what they can see at the time. In my case it was lumpectomy and 5 sessions of radiotherapy but then it changed rapidly once the surgery was over to chemo, immunotherapy and radiotherapy so advice and treatment is fluid and reacts to what is found. The other thing to consider is surgery recovery times. Recovery from a lumpectomy is 3-4 weeks but recovery from a mastectomy is much longer and is a more radical surgery. I have very weedy veins on my right side so every blood test and chemo session was agonisingly painful so I was offered either a PICC line or heavy sedation so I went with the P line because I have a fear of being out of control on drugs like Diazepam etc. You will have a lot of between a rock and a hard place decisions to make but remember the clock is ticking and the longer things are delayed then the worse your outcome could be.

@HauntedDishcloth
Thanks for the commiserations. I am also going to miss Billie Eilish next month and a small rock festival in July because they fall on chemo/treatment weeks. It hasn't been a complete loss as I did get to see Royal Blood in March and Blondie last month and I saw loads of bands at the end of last year so I'm just sucking it up for now. I've stopped booking tickets for this year because things are so uncertain and I'm not sure that I've got the energy for long events like yourself (and seeing Blondie totally wiped me out for a few days last month) but I did consider seeing NIN as they're on my 'see' list too but there's always a next time I suppose. I really hope that you get to see NIN but arrangements for cancer sufferers (and other conditions) is a bit shite tbh especially seeing as you can generally only get disabled access if you're on PIP which is a hellish task in its self!

Tryhardermum it might help if you were to wear a sleep mask while you were in the CT ? I have body scan every 3 months, and its not claustrophobic at all for me, the MRI is the one that is like small tube.

I am having a strange sort of side effect from diagnosis in that I have been out and spent a lot of money this week!. Previously I wouldnt spend any because I thought whats the point when I go everything is going to charity anyway as no family. Weird or what

@HauntedDishcloth and @MothralovesGojira and others worried about running out of steam...

You need a Sholley. It describes itself as 'a discreet walking aid' but the beauty of the model I have is that you can sit on it! I can walk OK, but standing/queuing gives me a sore back. During lockdown, benches disappeared and haven't been replaced and chairs in shops are like hens' teeth.

It's basically a 4 wheeled shopping trolley, but the marketing is hilarious, selling a lifestyle of Craft Fairs and Farmers' Markets rather than the weekly shop at Lidl - tho' it does have a special pocket for 'your baguette'. Models include The Chelsea, The Westminster and the Carnaby Street. The one with the reinforced lid you can sit on is the Ruby Royale. Cheaper from the website than Amazon.

Not a wheelchair, but I think anyone perching on one would get preferential treatment at gigs/festivals. It's certainly widened my range.

@thereisonlyoneofme maybe it's linked with an OC diagnosis as I too can't stop spending money! I have many a peaceful afternoon with my cup of tea and music on, just browsing online for my next purchase. I've never been that keen on in-person shopping so this is ideal. Currently I'm waiting for some new sandals for myself and it's DD's birthday soon so I've got some JL pyjamas coming as part of her present. I used to be quite frugal before my diagnosis but my increased spending kicked in after my surgery last year so don't worry, it's completely normal 😂.

@Tryhardermum the treatment from your BCN is outrageous and I can't imagine the surgeon would be pleased to know that she knew better than him. I too would complain to PALS.

I have a CT every 3 months and for OC, it takes about 5 minutes if that. The part they're looking at is in a huge donut sort of thing which is about 30cm wide and well away from you and your head is sticking out. I was completely freaked at the idea of my first one, I was waking up in the night sweating and shaking I was so terrified. I watched some videos on YouTube of them being done which did help me a bit. I'm incredibly anxious about everything all the time and have been on beta blockers since the start of all my troubles. As mowly suggests, I would contact your GP and ask for some help with things. Mine has been really kind and sympathetic throughout and has prescribed really readily too. Before you enter Cancerland, you're braced for the usual faff with GPs but I have been astonished how accommodating the whole surgery has been actually.

Thank you, guys, for all your support and kind words. I suppose I thought I’d be treated much better, so I’m lowering my expectations. The bc nurse I have is the lead one and I was passed on to her from my original one cos she didn’t tell me about the potential mastectomy, so I was upset with her and they automatically changed me, without me asking. I know the consequences of not being able to go thru with radiotherapy, which is making my anxiety worse. I’ve got hypnotherapy booked and will use an eye mask on the day I asked the gp about sedatives, but she said it would be best to ask the hospital to sort that out!! @MothralovesGojira what aspects of the recovery from a lumpectomy take so long? Also, I hope you don’t mind me asking-and there is no need for an answer if you don’t want to-but why did yr treatment plan change after the lumpectomy?

Welcome @Tryhardermum , I’m sorry you’re here. I’m very new to the thread myself but have had some lovely replies and support.

I’ve had a lovely weekend to be honest, I’ve made a real effort, went out for breakfast with all the children yesterday then relaxed in the afternoon. Today we went for a short stroll for ice cream and had a BBQ this afternoon.

My tummy feels so tender since the drain, a lot like ovulation pain but all the time, it’s sort to drive over potholes/walk fast etc but I’m trying to tell myself it’s in my mind. I have this huge fear that they’re just growing and growing and I can do precisely nothing about it until my laparotomy in 4.5 weeks. I am so scared and paranoid it’s ridiculous I feel like a total mess. Biopsy results this Wednesday supposedly and I’m dreading it.

@Tryhardermum

Of course I don't mind questions and I'm happy to explain and expand on my experiences so please feel free to ask anything that helps you.

I had my BC found via a regular mammogram and had a biopsy straight away which discovered that I have hormone negative but HER2+ cancer. From the mammograms and ultrasound scans it was established that my tumour was only about 7mm big so easy to deal with and I was recommended a lumpectomy and removal of the nearest lymph node followed by radiotherapy and a short course of Herceptin. I was reluctant to have radiotherapy as my lovely sister-in-law died last year from the effects of radiotherapy which she'd had for non-Hodgkinson's on her left side 20 years before. Last summer she developed a sarcoma across her stomach that pushed up her diaphragm into her heart which exposed a crack in her heart wall that had previously been hidden which caused her heart to collapse - it was a complete fluke but her sarcoma was so advanced that she would have died within six months regardless.
I was told that yes, I could refuse radiotherapy but I would have to have a complete mastectomy of my left breast instead which is radical surgery and has a recovery period of about 4 months compared to 4-6 weeks for the lumpectomy. If I went with the mastectomy then I would then have to have reconstruction surgery later on both breasts as my breasts are very heavy/dense and the uneven weight would effect my spine etc. I had a chat with my brother and asked what he thought and he pointed out that radiotherapy had vastly improved over the last 20 years and the risks were lower. I also had to consider how long I could 'be out of action' for at work and home so I went with the lumpectomy and I'm glad that I did. I was back at work three weeks after surgery although on light duties. I have recovered fairly well although my left breast looks a little like a two week old party balloon it is still there and mostly matches the right side still. The biggest pain has been caused by the lymph node removal from my armpit which still gives me grief but it's likely that lymph nodes will still have been taken if I'd had a mastectomy so no loss there really.

Unfortunately due to covid backlogs in surgery wait times I had to wait for about a month for surgery. On the morning of my surgery I had an ultrasound and a guidewire inserted and it was clear from what I could see on the screen, and from how the radiologist was, that the tumour was much bigger than it had been previously and indeed it had grown from approx 7mm to 16mm. This meant that my tumour was aggressive and needed a different treatment plan. So, the original plan went out the window and was replaced with chemo, Herceptin (to suppress the HER2+ element) and then radiotherapy. Because of covid backlogs I had to wait about six weeks for oncology to sort out a plan and I'm now having 4 cycles of chemo rather than 2 and I'll have Herceptin for at least 6 months and radiotherapy status is currently an unknown quantity. I confess that I'm still twitchy about the radiotherapy element but I will likely do it because I don't want more chemo which has been mooted as a possible replacement by an oncologist. See what I mean about being between a rock and a hard place? Had my tumour not been quite so aggressive and that covid hadn't caused quite so many delays then I would have been done by now and I would be back at work, working at getting my health back and enjoying seeing MCR at Milton Keynes today. I hope that this has helped?

One thing that I've noticed from the different stories on this thread is that hospitals do things in different ways. My hospital always does biopsies first and other hospitals do not. Do you know what type of BC that you have Tryharder?