Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@Atreus thinking of you today. I know exactly what you mean, I’d got my head around the diagnosis and felt good after surgery, was waiting for my radio appointment only to be told nope, sorry, it’s chemo actually. I cried for about a week and on my first day I was so terrified I couldn’t walk in, DH basically had to (kindly) force me through the door. But once it got underway I really was fine. The first one was the worst by far and even then I was up and about being normal and I didn’t expect to be. I actually miss the support and care I had from the team in the chemo suite as I feel a bit lost now!

You’ve inspired me re the Camino - I’ve googled and I WANT TO DO IT!

@Atreus - I would echo what everyone else has said. Starting chemo is huge emotionally, such a massive thing to get your head around. But there's a good chance you will feel pretty much fine at least some of the time, and able to do at least some of the things you enjoy at various points through the treatment cycles. Sending you love and calming thoughts.

Atreus Hope it goes as well as it can today. Its worth keeping a symptoms diary as cycles follow a pattern and also drink lots before helps. The first one is the worst as its the unknown. Its awful about the summer and the surprise you will have chemo after we told you before you almost certainly won't when they knew data showed I would need but I would not have coped with news all at once either, had same last year though we did get a couple of weeks in UK when there were gaps in treatment. And it does end though it doesn't seem like it at the start. Take it one day at a time. There's lots of meds for nausea / sickness and that wasn't much of an issue and I have a sickness phobia, ondasetron worked well though they gave me 6 a week and only needed 1 or 2.

Hi all, I've just got my date for my mastectomy, I'll be having an immediate reconstruction with an implant. I know I won't be able to drive for 4 weeks but after the first two weeks I can be a passenger in the rear so just wondered if anyone can recommed a seatbelt pillow to give a bit of protection? I'm also wondering about cushions for sleeping with to make things more comfortable with a drain, any recs? My last question, I am a 38f, I've been looking at post op bras that zip up at the front but what size do I get? I guess I'll be the same size after the op as the other breast is being left alone, do post op bras come in my size, they all look a bit small to me? Any other tips also welcomed :)

Hope you're all well. I started immunotherapy today. I built it up to be way bigger!

Hello all, I have been recently diagnosed with triple negative breast cancer. On another thread on that but this thread has more traffic so here I am. Just been told a CT of my abdomen (to look at blood vessels) incidentally found something on my hip that needs to be investigated further with an MRI. No indication that it is deeply suspicious but I expect the worst. Has anyone had hip spots on a CT scan turn out to be nothing?

I’m sorry to hear that @isaxx No direct experience, but I had an anomaly on my liver show up on my CT to check for BC secondaries. It turned out to be benign. It was a horrible, horrible time and I do sympathise. My BCN told me it was very common for anomalies to show up which are not at all related to BC. Did they tell you it was not highly suspicious? Obviously they can be wrong, but I’d try to take comfort from that if they did.

Thanks for sharing @dotty2. Good to know that anomalies are not necessarily related. The radiologists' report is actually quite neutral and matter of fact saying there is this anomaly and booked in for mri to investigate. The consultant said some radiologists express an opinion using words such as suspicious or not. Others don't express any opinion but just state things neutrally. Impossible therefore to know what to read into it...

@Scandimandy
Re cushions, I just shoved a pillow from the spare bed down there when I had to go in the car after my reconstruction! It worked fine, even if I did get some strange looks from people giving me a lift.

For sleeping, I didn't need any other support, but needed to be slightly further into the bed so the drains (I think I had 2 for the mastectomy and 3 for reconstruction) could rest comfortably on the bed. Sometimes a long handled, little cotton bag worn round your neck can have your drains in is helpful - the hospital gave me one kindly made and donated to them for this purpose. It saved me getting tangled when getting up in the night for the loo. You also need to get used to sleeping on your back for a while, which was difficult for me, and a nightmare for my husband as I snore. Loudly, apparently 😴😂

Re the bra - I was a 34g/GG, but dress size 18 and I found Sainsbury's front zip up in large was perfect - please allow for a bit of swelling pot op. In fact, I started wearing these when I had my mastectomy (delayed reconstruction) in lockdown, and I've never stopped as they are so comfy! I only tolerate a sports bra when training - comfort is more important to me now 😁

I hope some of this helps, and that you are happy with the results x

Scandi I sized up with the post surgery bras and would also just get cheap ones but you get swelling. Cushions I got fleece ones anything soft and the more the better. I didn't have a drain.

isaxx So sorry to hear your diagnosis and it's utterly terrifying when they are scanning for stage 4. I had about 8 things show on my CT for spread, one was on hips and 1 was a big mass on adrenals they said could be cancer. Hips they said was bony island, no idea what that is but they said it meant weak and not cancer. The adrenals turned out also not to be cancer. I think with these things it's normally not cancer but it's scary. Distract if you can. Sending love.

@TopOfTheCliff a plank for 2 mins?! That’s amazing! Ooh maybe I shall plank again one day after all…I really wish there was some “proper” fitness advice out there that was the generally accepted truth! Not pink beanbags and “go for a 20 minute walk” 🙄

Thanks so much everyone for all your comments about my first chemo earlier today. It was a loooong day. I arrived at 8.30 and didn't get home until 17.45. Overall the day was a really positive experience, mainly due to the amazing woman I shared my room with. Same diagnosis and treatment regime as me, just one round ahead and we clicked immediately. Good to understand her experience so far, even though I get that everyone reacts differently. We are on the same schedule and so our next chemo is on the same day in 3 weeks time and I really feel like I lucked out.

Not so good was my cold capping experience. It just didn't feel cold enough and I kept telling the staff and they just completely dismissed me and told me it was because I have thick hair (it's honestly just normal). In the end I finally got someone to change the outer cap size and it was a bit colder but I'm convinced it won't be enough. But at the end of they day, it's just hair (I guess). I'm now googling wigs!

Hi all, I started a separate post then saw this group. I was hoping I may get some advice. Pre warning it’s a bit long..

I’ve been having stomach issues for last 3 months. It started spontaneously with diarrhoea that has never resolved then bloating not gassy more jelly/early pregnancy like ( i look 5/6 months pregnant) constant pressure on bladder and needing to go urgently, back stiffness and pressure , no appetite constant full sensation. Initially I was tested for gastro issues which all came back fine, full bloods also clear. Saw a different gp who was more concerned about bladder and did an examination and discovered I have an enlarged uterus, a mass in uterus the lump can be felt externally in pelvic region. Since the discovery i had ca125 and full hormone panel levels again fine. Also I’ve lost 7.9kg in the 3 months but again I’m hardly eating and broken sleep due to peeing which will probably account for the exhaustion I’m feeling. GP has now referred to gynaecologist on 2 week wait gp advised likely to be fibroid in light of blood work all being fine. My question is Should I be worried I keep thinking if all bloods are fine it’s ok but now worrying that I’m setting myself up for a shock should it be any thing more serious. I’m 42 & periods are fairly regular a bit stop start for the last few.

@Atreus I was just coming back to see if you'd been back; I'm glad your experience was a positive one. It definitely helps when you click with the people around you. I've met some lovely ladies (and one gent) over the past few weeks & it's been good to have someone to pass the time with.

I didn't ask about cold capping - my hair's holding on in there for now, although there was more in the plughole tonight & I can feel it's thinner. Have you enquired about the NHS wigs? Someone is supposed to be calling me to arrange to try some on over the next week or so. I've ordered a few pretty headscarves too in case I don't get on with wigs.

I'm in for another drain as a day patient tomorrow - I actually think my body's started processing the excess fluid itself the past few days; I've done nothing but pee & it's definitely more squishy post-baby belly than it was on Thursday, than rock solid too full of fluid. Hopefully I'll be in and out fairly speedily if my bp plays ball, unlike the first time 🤞

@Therocksword that sounds very like my belly - mine's caused by ascites which is caused by the cancer. My ca125 came back only slightly raised & not a particular cause for concern & I was only investigated further because the MacMillan nurse who sat in pushed them to look further up rather than send me home to wait for a variety of departments to investigate together. But, that said, yours may well be positive news! Fingers crossed that it is 🤞

Thanks for the reply @lucysmam. I’m definitely feeling a bit more uneasy about it all now. I was fine waiting for ca125 and Happy that it was only 13 but I keep getting a horrible feeling that I’m not taking it seriously. I think it’s because it’s been going on for 3 months. It’s feels like it’s been such a long time!

Hope that turns out to be just fibroid Rock. In my mid 40s I had an enlarged uterus which caused utis and got bleeding from everywhere at same time. Mine was a fibroid. They are really common around that age. I didn't have bloating with mine but you can look pregnant with the larger ones so that could be that. I didn't have bad stomach either or weight loss but if you've not been eating that would explain weight loss. Hope they find the cause and easy to treat and benign. I was tested for so many cancers around that and all clear but few years later got breast cancer diagnosis. I have found GPs not that reliable at knowing whether something is cancer or not but the specialists very knowledgeable. All my bloods were fine at my cancer diagnosis, well apart from inflammation.

Glad the chemo went OK Atreus.

Mine took a long time to get to the bottom of too - I thought I had a sick bug picked up at work & my belly sort of came out of nowhere. I was vomiting an awful lot for about 6 days & then had the most awful indigestion ever after that. All in, it took 8 ish weeks to get to the bottom of (they sent me to see a consultant without a scan so I then had to wait for a scan, then another appt with the gynae consultant) & was incredibly unpleasant. I've never felt more vile than those few weeks & my MH took an absolute battering. Tbh, as horrible as it is, knowing the cause was a relief & now I know it's manageable rather than "I'm stuck not able to manage any bloody thing other than cry about how tired & stretched I am".

I do hope yours is a more positive outcome than mine and is dealt with swiftly once you're seen.

I didn’t think my cold cap was cold enough either @Atreus but it was fine. I did take a scarf put over my head and sit on to pull it tighter after the first time, there’s a picture upthread. When I went onto the Paxman scalp cooling Facebook group a lot of women said they didn’t think it was very cold either. I thought (about me) as my dad might have said, where there’s no sense there’s no feeling…! It’s horrible though waiting to find out whether your hair is going to fall out, or rather how much will fall out as some definitely will. I found the wig much easier to wear than I expected though, both physically and psychologically. I just got mine through Macmillan at the hospital, it wasn’t a particularly posh one.

@Therocksword Your symptoms sound a lot like mine did. I also had ascites caused by ovarian cancer, my CA125 was 420 but it’s not always a good indicator. In younger women (I am 37) it is more likely to be low grade cancer which doesn’t always raise the CA125. However it is still more likely to NOT be cancer.

@Atreus Glad it went well. I felt the same re the cold cap not being cold and was told it was due to thick hair. Sure enough day 14 and the lot fell out 🙄🙄🙄

@Scandimandy If you are uncertain on bra size post-surgery, there are some specialist bras that are only sized by band-size so they can cover multiple cup-sizes and allow for swelling.

@lucysmam oddly I felt some relief knowing the symptoms are being caused by something other than the clean bill of health all the tests have come back with! Which don’t get me wrong is great but it wasn't helping with what I am experiencing. I actually began to think I was imagining it all then I’d try to get dressed or go out and think no it’s real.

@AGreatUsername thank you for your reply. I think I need to prepare a bit just incase. I’ve been in a strange world since the mass was discovered I just keep thinking it’s all fine and then getting a sinking feeling. The sinking feeling has been more today that’s why I posted. I have only told a couple of people in real life.

I am sorry to you all going through your treatments and surgeries and reading the thread it’s lovely that you’re all supporting each other through the good and bad. I feel like an imposter worrying about this when you are all going through it.

Thank you @Silkierabbit I hope so too. I’m normally heavy and 7 day periods but it’s gone a bit off the last 4 periods. Not as heavy and it stops around day 3/4 and then comes back Im hoping its stress from this though.

@Silkierabbit

That's really good to know! I need to ask for a swimming prothesis.

How many radiotherapy sessions did you do, and which areas? I had 15 in 5 areas, eg supraventricular fossa, etc etc can't remember the other names. The lymph clearance I had was levels I, II and III. I also had a seroma post surgery.

pain hasn't been a problem for me at all though, since surgery. I'd expected worse.

@TopOfTheCliff

Thanks for this reply and the great suggestions!

Hi Scandi, I got my seat belt cushion from etsy, i also got some heart pillows which really helped when I wanted to sit on the bed with my back to the wall as my armpits were so sore. The pillows elevated the arms away from.my body and this helped massively. I had two drains.

I was in the car from week 4 after operation and only used my seatbelt cushion twice so didn't really need it.