Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Consider your hand held firmly through this worrying time .
Rest well . It is all very frightening .
Talk whenever you want .
Some of us here are waiting and some wading out the other side .

@NaviSprite Welcome! Its a lovely group full of information, advice and a lot of hand holding. I would go back to your GP or breast clinic and push the referral. You can sometimes get cancellations. Waiting for answers is the worst part.

Just a quick still alive and kicking post. Knackered and can’t concentrate yet so will get back on when I can.

@SnowsInWater did you have your scan yesterday? Hope so, and that the results are good.
@NaviSprite hello, so sorry you have this to deal with. Hope you get an appointment soon - don't feel shy about chasing for it.
@Squiffy01 you rest as long as you need to!

Hello All! I hope everyone is doing as well as possible. A chemo question: I had my first chemo on Thursday. Surprisingly felt fine the day after, apart from lightheadness and a bit of a headache. Yesterday morning I noticed the bad boob was a bit pink. Phoned the hospital and they said as long as its not hot, itchy and I don't have a temp then not to worry. Anyone else had this?

Also not sleeping great. Possibly the anti nausea/steroid tablet? Plus last night woke up with aching side/back (bad boob side). Filgrastrim injection? I'm paranoid about every little twinge/symptom at the moment

Hi @megjobethamy ! I am at a similar point to you with a similar story. Lumpectomy 13 Feb, was going to have chemo 20 March but decided not to go ahead due to COVID19 (joint decision with oncologist). So, on to radiation which is now almost over - two more treatments to go. And I also have my Letrozole script filled and ready to go.

Radiation has been very easy for me - almost no side effects. I have a 2 hour round trip for the short treatment every day - that’s been the worst part! I’m not due to start the Letrozole until 2-3 weeks after the end of radiation- the radiation oncologist said to wait until I’m clear of any radiation side-effects (which may lag after the treatment), and give my body time to heal.

I too am not looking forward to it - I already have hot flushes and hope they won’t be much worse. Oncologist said the unpleasant Letrozole effects might settle down after a few weeks, and that there were alternative drugs to try if it’s too unpleasant.

So let’s hope we can find drugs we can live with given they’ll be for the long term!

Hi @citybumpkin.

Everyone's reaction will be different but my experience is that I started feeling rough a few days my first chemo had finished.

Pain from filgrastim injections for me is was awful - I was on the higher dosage after my first chemo. The Dr gave me cocodamol to help with pain relief. Following this round of chemo (2nd) my Consultant has put me on a lower dose now. I've done 2 injections so far but from what I recall first time around the pain became unbearable around day 4.

Lastly lack of sleep. Tell them. They can give you sleeping tables to help. I know you probably don't want to take more tablets but lack of sleep can make everything feel a hundred times worse. I found only sleeping for 3 hours a night for weeks unbearable. The sleeping pills gave me 5 hours a night which is manageable. Steroids are bastards.

I keep a separate notebook where I keep a diary of how I'm feeling every day.

@InOtterNews So far I'm okay as I can be. The pink boob has settled down a bit. I'm thinking its a reaction to my cording/blocked lymph. Managed some housework, toddler entertainment and a walk. Only taken one of the two prescribed anti-nausea meds this morning. Don't feel sick and my appetite is ok. I'm tired but think thats mostly from anxiety. I don't want to take sleeping tablets due to DD. My partner sleeps through anything so doubt he will wake up if she cries in the night (which isn't often).

Washed my hair for the first time and I'm sure my scalp is already tingling. I worry how much this thing will age me by the end. Before I was diagnosed I felt great about my body but now I hate it and what it could become. Sorry...self pity party there.

Hope you're doing okay

Can I join you guys?
My story is..I'm 38 in February I noticed my nipple inverted but felt no lump so went to my GP she sent me to the breast clinic, because I work at the hospital they asked when my next day at work was so I went on the Tuesday to see a consultant he didnt seem worried there was no lump done an ultrasound and said he wanted a mammogram biopsy and scan. I went back to see him after and he told me it didnt look like good news.
A week later I had my results also the same day I found out I was pregnant. I spoke with the consultant my husband i had already spoken and decided what ever the results we wherent in a place to have another child. The consultant told me the lump was cancerous and I told him I was pregnant and needed an abortion. They where fantastic I was booked in next day for an abortion and had my surgery the following week. Then lockdown hit my follow up appointment was cancelled then cancelled again because my results wherent back yet then 4 weeks later I was told it was 18 mm grade 2 er+ pr+ her2 - and had spread to 2 of 5 lymph nodes removed.Because of my age they recommended chemo followed by radio then hormone treatment. Because of covid I cant have chemo at my local hospital so have been sent to the QE in Birmingham. I met the oncologist last week he was very reassuring and suggested chemo was the way forward so I start on friday. I'm having a picc line on thursday then either 4 or 6 sessions of chemo the number will be decided at week 9 when they know what's happening with covid restrictions
And im terrified Dr Google has me all worked up what if its actually spread what if I'm riddled with cancer are they usually sure of these things? All they keep saying is I need to be very careful what does that mean in terms of isolating can I go shopping? can I have a daily walk? Oncologist advised yes have your daily walk it will do you good. But there never an answer as to how much more careful I need to be. What should i be eating to strengthen my immune system my head is a mess and covid is making it worse I flick between feeling positive to having a full on breakdown in case I get covid. They arent cold capping but I had made peace that my hair was going to fall out anyway so do I shave it off anyway or see what happens with it next week?
I'm so sorry for the ramblings but this is the first place I've actually felt like I could share my story

Welcome lurkeycakewoman - sorry you're joining our ranks, but know that there are lots of very knowledgeable ladies on here who are going through, or have gone through this, and where all here for when you have a question or just want to scream and vent! Any questions you have, ask here.

Do you have a breast care nurse yet? They will always help with support and answering your questions.

It's good you're having a picc line, as once it's in they will take bloods and give you drugs through it, so they won't be repeatedly stabbing you! I had a port fitted, and while I was freaked out about it and very frightened, the group here helped me through it, and I'm glad I had it in (I have awful veins and it would take multiple goes at getting cannulas in or blood out- which was stressful for everyone involved!).

Do you know what chemo drugs you are having yet - if you let us know, we can probably give you an idea of what to expect. I was terrified before my first session, but can honestly say that the anticipation and fear of the unknown was worse than the actual treatment, which was fine (and the chemo nurses take fantastic care of you). With my chemo, my immune system pretty much gave up, and I got a lot of infections. Other people sail through with few side effects - it's very individual how you react. Because I've only recently finished chemo, I received an NHS letter saying I needed to shield myself for 12 weeks. I would ask your nurse or consultant what you are able to do- I imagine they will tell you that a walk might be ok, but shopping is a no-no, but again, this depends on your drugs and response, and they ate best placed to advise.

One of my biggest fears was the idea that I would be vomiting uncontrollably - I was so relieved that the anti-nausea drugs they give you when you have your treatment worked really well and i just felt a bit of nausea the first time. I told my nurse and was given different anti-sickness drugs from then on, and they worked really well and I had no further nausea. Make sure you tell them if you have any unpleasant side effects, as most can be treated with medication, so there's no need to suffer unnecessarily!

Good luck with everything - let us know if you have any questions. Even in the middle of the night, there's usually someone about to offer a hand hold.

Hi zorgo yes I do know to a degree it will be either 3 or 4 epirubican and cyclophosphamide and if it's just 3 of that then 3 taxol. I'm not sure why they think that can forgo the taxol of needs be?
It was very up in the air if I needed chemo before I had my results and it still wasnt decided when I did get them my consultant referred me and asked for my case to be reviewed. The oncologist talked about tests that could be done to see if there would be a benifit from chemo but said that he would recommend it because of my age so I went with his advise.
I have the breast care nurses at my local hospital who have been fantastic and now another team at the QE I feel like I dont want to be bothering them with phone calls all the time and I try and save up my questions for appointments then forget them instantly when I think of them
The breast nurse at the QE has told me I need to report everything and not be afraid to and to utilise the nurses at my local trust aswell if needed
I havent been going out anyway bar a daily walk and to the hospital last week for a ct scan and bone scan (are they routine?) my husband is doing everything at the moment and to a minimum so he goes out maybe once a week hes been advised to stay off work for as long as possible and his work have been great in letting him.
I've read through most of this thread and love how supportive you all are other forms I've looked in made me feel like cancer was a competition and who could be the sickest from treatment. I'm just trying to get to the other side and go back to normal whatever the new normal will be

@BloodyBridget You have a great memory, wish I could say the same. I can no longer claim Chemo brain but God my brain just doesn't work the same way it used to! Scan was on Friday, I have a phone call with my radiation oncologist tomorrow to get the results so fingers crossed. My arm is a bruised mess though from the cannula, my veins are shot after Chemo and I have lymphodema in my right arm which means everything has to be in my left. If I had to do this again I would have agreed to a port to save my veins.

@citybumpkin Glad your first Chemo went ok 😊

I can't remember who was asking about Leterozole but I have been on it (Femara brand) for seven months now. As Inflammatory BC has a high early recurrence rate it's non negotiable for me but I must admit it's not much fun. It has left me very stiff and sore, my arms and shoulders are particularly achy. I have also put on a fair bit of weight and am still very fatigued most of the time. The aches and pains are definitely the drug, not sure if the rest is just residual from very aggressive treatment. BUT I am alive and the sun is shining and the Covid restrictions are starting to be lifted here in Sydney so I shouldn't moan.

Good luck to everyone else going through treatment/getting through the days here xx

lurkeycakewoman - I had EC for 3 rounds, then docetaxol plus herceptin and perjita for 3 rounds. The herceptin and perjita are specifically for herceptin positive breast cancer. I found EC easier than docetaxol, but others find the opposite - it’s very individual how you respond. My immune system was awful during treatment, and I got a lot of infections -but again, others sail through with no side effects.

I’d speak to your consultant or breast care nurse about what you can and can’t do. As I only finished chemo quite recently, I received the NHS letter telling me I should shield for 12 weeks - which means I only leave the house for medical appointments at the moment (very grateful that we have a garden!). You’ll probably be ok going on an isolated walk, but they will probably tell you not to go shopping, as the infection risk is higher. You really need to get advice from your BCN or consultant though. For shopping, you can register on the government Coronavirus website and get put on the extremely vulnerable list - this will let you register with supermarkets for priority delivery (all our food comes from Sainsbury’s or Iceland at the moment).

Crabb..sorry for not getting back sooner.. that is very interesting and very reassuring that the radiotherapy is going well for you. Like you the journey is the longest part! About an hour and a half round trip. I was hoping to have accelerated radiotherapy where treatment would be over in a week(!) but I have a small seroma under my arm and he is worried that the higher level of radiation may cause problems such as lymphoedema in the future. So it’s 3 weeks which is fine. I’m curious as to your decision re chemo.. sorry for asking? You obviously were given a choice?
I have already started the Letrozole. Thanks to Snow for her input there.. I have taken it for about 3/4 days and no side effects yet! Early days Fantastic group here

Thank you zorgo I really appreciate your answers they are very helpful I've registered on the government website and hopefully I can get shopping delivered instead of sending my husband to sacrifice!!
I dont even know how I feel about chemo and this whole covid thing makes it worse. Friends and family keep messaging saying oh we will come see you once lockdown is eased how do you even explain to them stay away from me fuckers

@Lurkeycakewoman sorry to hear that you're going through this but you'll get lots of support on this thread, I have. The thought of chemo is definitely worse than the actual chemo. I was originally scheduled to have 4 rounds of paclitaxel and carboplatin followed by 3 rounds of FEC. In the end I had the first 4 rounds then the rest cancelled as I'd had a total response (no cancer could be detected on an MRI scan). I have triple negative BC. It's good they're going to adjust your chemo to how you respond. The biggest advice I can give is stay away from Google. Treatment changes so rapidly that online information becomes quickly outdated and incorrect.

@citybumpkin re: the insomnia - it was the steroids which caused the majority of my insomnia. I worked with my chemo nurses to reduce the dose I took, although they sent me home with the full dose in case I needed it. One of the anti sickness meds can also cause restlessness in younger patients (I'm 43), but I can't remember which one. They switched me to cyclozine hydrochloride and that helped.

I saw my surgeon today for my two week follow up after my mastectomy and node clearance. The good news is that the chemo seems to have done its job and no cancer can be detected in the biopsies. It's a huge relief! I will have radiotherapy but then I'm done.

I hope everyone is ok and staying safe.

Wow what an excellent result barbarous. Im glad that you didnt need the whole planned course of chemo and just have radiotherapy to go that sounds like so far away for me right now
I try my best to stay away from Dr Google I realise that everyone's story is so different and everyone follows a different path.

@Lurkeycakewoman thank you. I'm part of a clinical research trial. We all have triple negative BC and we're all classed as early stage but the responses are all different. Cancer is unique to the individual and you can't directly compare one person to the next.

Good luck with your treatment. It will go faster than you can imagine.

So my PET scan that was supposed to be just a reassuring "see, it really is all gone" thing has shown a small area of concern in my liver. Apparently it didn't show on the CT, just the PET but as I have zero medical knowledge I don't really know if that is good. Ultrasound on Thursday morning then another phone chat with my doctor on Friday as he is not doing face to face consults. Of course it may not be cancer but it is so hard not to stress. Again.

@SnowsInWater

So worrying for you . Holding out a reassuring 6ft stick for you to hold other end of .
I am hoping to hear from breast clinic today as skin expander very sore and a think I am developing a seroma. Not a huge thing on the grand scale but a pain nonetheless .

Hi everyone. I hope you don't me coming back with update. No answers today. It more questions. Dr didn't do colonoscopy today. Explained that CT scan showed a thickening of the rectum 7cm up and about 2.5cm in size. Said it might have been poo or nothing at all but would I mind digital exam 🤔. Found rectal polyp. Next step full colonoscopy and biopsy and also MRI. Explained that the polyp too big to remove during colonoscopy so MDT will discuss case. Best case remove trans anally or if not open surgery with rectum removal bowel resection and temporary stoma. Then depending on biopsy findings cancer or pre cancer they will discuss next steps. He did say that the part of the polyp he felt was soft and not always but often cancers are hard so I'm clutching to this piece of information like a lifeboat. He was lovely but to be honest I'm not sure I've taken it all in.

Sorry for ramble but I don't want to speak to my family as don't want my 16 yr old DD getting any hint of this just yet and my family can't hold their wee. Lol. So I hope you don't mind me off loading again to you.

Please forgive me. I meant to say that I hope everyone is keeping as well as they can and sending best wishes. Didn't mean to sound so self centred. 💐

@gillmoregirl for heaven's sake, you don't have to apologise for anything! I'm so sorry you have this anxious situation and hope you have a clearer picture soon.
@SnowsInWater that's such a bummer, I was really hoping your scan would be absolutely fine. Handhold to you.

@barberousbarbara so pleased to see your news!

Thanks guys.

@gillmoregirl This is the best place to offload. I know what it is like to try and keep things from your kids, my DD was 16 when I got my BC diagnosis and she really struggled. Hope you get answers soon.