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

@Squiffy01 @daisypond I reckon we're all neighbors. I'm closer to Lewisham and every other hospital. Even St. George's is closer than Guys. I had my first 2ww appointment 17th December they did the whole shebang there and then, but wasn't until 13th Jan when I got a call out the blue from guys telling me I've been referred to them and to come in the next day. I'm getting very concerned about the coronavirus. Do you think I can delay chemo for a bit until it's all,calmed down etc? What are you all doing? I've to use public transport to get into the hospital. I have a car, but there's no parking etc. I get a bus into elephant and then tube into Bridge. It's quite worrying x

Daisy I meant to add. I've heard absolutely nothing from my GP since I went there 3rd December showing them my lump. Yesterday she actually called me to find out how I was doing as she had apparently read the emails send from the hospital. Well she didn't as she asked if if I had surgery yet 😂

I finished chemo today!

So looking forward to not feeling horrible.

@Nonotmenori I’m at Guys/London Bridge too.

@Piggles39 that must feel incredible ( well, as incredible as you can). Very pleased for you

New account, for anonymity!! Early 40s, no kids (never pregnant), for background.

Feeling really stressed right now.

Found a lump in left boob a few weeks ago.

Eventually dragged myself to my GP where the two of them (!) confirmed I wasn’t imagining the massive (to me) lump and got me a referral to the breast clinic within two weeks. I had Googled some so I knew a two week referral was standard, so that didn’t worry me. GPs didn’t say if they thought it was bad or not and said how they couldn’t diagnose it themselves. Fair enough. I’d rather they said they can’t diagnose instead of giving me a false sense of hope or have me panicking even more unnecessarily.

The letter from the hospital with the initial appointment did freak me out a little bit as it had a paragraph about “if you need surgery blah blah”. That is not what I want to hear before I’ve even been seen!

Went to breast clinic appointment and saw consultant first for exam and scribbling over my boob. Was told if it was a cyst they’d drain it then and there, after mammogram and ultrasound. I’ve forgotten what else was said because I was so hoping it was a cyst and it would be drained and that would be that.

Had mammogram, I think just two of each boob, then off to ultrasound.

Nobody so far is telling me if they think it’s bad or not. I’d already decided I wasn’t going to ask the radiographer directly as I didn’t think it would be fair to put them on the spot.

Ultrasound, and I heard the word “biopsy”, and something about how she couldn’t see something properly. Turns out she found an enlarged lymph node, and calcification, all in the left boob. Had immediate biopsy of the lymph node and the original lump I found - the “snap” type one. The calcification was so small the biopsy couldn’t be done by ultrasound it had to be done in the mammogram machine. They did that within half an hour too, and left a little metal tag in place to show where they’d biopsied, in case they needed to go back in future.

Still nobody is saying what they think these things are. I didn’t get to see the consultant again, just given an appointment for a couple of weeks to get my results. The nurse that was with me through ultrasound and the biopsies was pretty insistent I should have someone with me when I get my results though, and that, along with them finding the extra things I hadn’t noticed is freaking me out.

Has anyone been through anything similar and everything was benign? I’m also worried that the biopsy on the big lump bled quite a lot, the nurse was pressing on the site with a dressing afterwards to stop the bleeding but yet blood was still escaping and running down my chest that she had to wipe up a few times. My head’s all over the place. I’m also wondering if it’s normal for any blood to come from the biopsy wounds more than 24 hours afterwards? It’s really not much at all but surely they should have healed up by now?

They put a dressing in my biopsy holes. Healed within a week, but hurt for weeks.

Got my kidney scan tomorrow morning. Early! Ugh. I phoned them up, as I have a dexa scan scheduled for 17th, to see if I could get them done the same day, but they only do the dexa Mon-Friday.

And I didn't get the sodding job! So pissed off as it would've neem same pay, but Monday to Friday and no more night shifts.

Then a call from the gp. Blood sugar is going up, despite new drug. He thinks they might not operate if it's too high. They have to weigh up the risk of kidney damage/possible tumours in my bladder versus diabetes complications. Aaargh! Severe keto now.

Hello! Can I join in please? Diagnostic stage. I have seen this thread pop up many many times but never thought I'd be posting on it.

Background : Loads and loads of lumpy boob issues over the years, all hormonal or fibroadenomas. Been to the Breast Clinic many many many times. Currently part of a clinical trial for mammograms before 50. Had a day at Luton & Dunstable hospital last summer which was quite stressful but was declared all clear. A couple of weeks ago I leant across the sofa and my boob felt weird. I went and had a feel and there was a very large lump above my right nipple. Had a swift appointment at GP with practice nurse who was unconcerned and declared it smooth and mobile but referred me for the normal check that I am so used to. Had appointment today. I wasn't remotely worried as the lump has receded quite a lot. I don't have a clue about my cycle as I am on the mini-pill so bleeding intermittent. However, all is not quite as it seems. I was so blase! Consultant examined me and said we needed an ultrasound. Ultrasound guy had a good old look and atmosphere changed immediately. He said it wasn't a cyst or fibroadenoma and he couldn't identify. He could I reckon. He went on and on with the scan for a really long time. He decided to do a biopsy which turned into four biopsies. He wouldn't enter into any conversation and sent me back to the consultant. Consultant was a bit shit with face to face. Said that we have to wait for results but that there would be an all team consultation and breast cancer treatment is fantastic these days. I am absolutely sure that his bedside manner was shit but he was telling me I had a tumour. I am weirdly calm about this. I am 50. I am a single parent to a DS who turned 9 on Thursday and is also ASD/ADHD. I have no family history. I am reasonbly slim and very very fit physically. I know this means nothing. I like wine. Is wine the problem? I had a bleed out while driving home because nobody told me I shouldn't drive. Emergency appointment at GP because I'd soaked through my bra and top and the dressing was like a balloon. Ultrasound guy was worried about how easily I bruised. I do. Always have. My boob tonight is black and blue and I am in agony. I don't know why but I had a feeling today would be bad news, yet I haven't actually had any bad news. My results will be 1-2 weeks but I am sort of resigned. Am I overreacting here? In terms of just "life", if it is what it is, I have to just get on with it and I'm OK with that. Just feel a bit off kilter and wanted to share. Thank you for reading and listening!

@ TheFormidableMrsC

I can’t help with advice because I’m at the same stage as you, with fewer clues to go on, just wanted to send a virtual hug!

@LemonsNVod Thanks lovely, hopefully we'll have good news. I am OK with it either way. I don't know why. I am usually such a panic merchant but not with this. It is what it is. If it's bad news then I'll just get on with it. I've got on with so much in my life, on my own, that this will be no different. Onwards...and good luck to you!

@LemonsNVod and @TheFormidabkeMrsC
I’m new on these boards too, but a little further ahead on the process.

My breast cancer was picked up on my first over-50 mammogram. No lumps. I have no family history either and don’t smoke or drink. But as the nurse said, the main risk is in being female and getting older.

My biopsy bled for quite a bit afterwards. Mine turned out to be cancerous, but, Lemons, that doesn’t mean yours will be. I had the titanium tag put in too. In my case, the bleeding meant that the tag came out and I had to go back to have it put back in another time.

Formidable, I bruised badly too. They said at the time that it was likely to. It is still healing now but it affects the ultrasound because they can’t see what they need to see. In my case, even after the diagnosis, they had to redo the mammogram to try to find the right spot to put the marker in.

I am still in the surreal disbelief stage, which seems to give a zen-like calm.

@daisypond I am sorry you got the diagnosis. It's shit. I am currently hanging on to a friend who has had all her treatment done and dusted within 8 weeks, getting rid of tumour and radio to follow. I am still very sore and uncomfortable tonight. I didn't have any sort of tagging, I don't know what that means, could you expand?

It's bloody horrible, all of it, but I try and focus on all the very very long term breast cancer survivors I know, including a lady in her 80's who was told she'd die in her 30's...onwards ladies!

@LemonsNVod @TheFormidableMrsC welcome to the patience inn! (It was named that when a lot of the original members were very poorly at the same time)
I can assure you both that the wait is the worst part of all this and the best advice I was given was to keep busy...my house was never so clean.
I have now had my mastectomy and DIEP reconstruction surgery. I have 2 types of cancer DCIS and invasive lobular cancer.
If you have any questions that can be answered someone on here will be there for you.
@TheFormidableMrsC I had the same happen after my second lot of biopsies and was black and blue right up until I had my mastectomy and now my new breast is black and blue lol!
Once you have a plan in place and things start happening you will feel better.
Take care x

Hello, I hope it's okay for me to post on here.

I've very recently recovered from mastitis and had a follow up appointment as I have a lump and lumpy lymph nodes on my right boob. I've been referred to the breast clinic which will hopefully find it's nothing to worry about.

Sorry if this sounds like a stupid question but what is a lump you can move around? I don't really get what that means.

@TheFormidableMrsC @daisypond @Hippiechick162

Thank you all for the reassurance! I was told I would “definitely” bruise, especially after the bleeding on the first biopsy site, but nothing has appeared at all on any of the three sites! I’ve changed the plaster things they put on, and nothing is lurking behind them, other than a bit of newly dried blood. Still feel a bit sore, with twinges, but haven’t considered painkillers at all it’s just so minor. (I didn’t take any the evening after the biopsies and regretted it, it really really hurt overnight!) I’m wondering if the bruising can show up over three days after biopsies or if I’ve managed to escape that bit.

The tagging/titanium marker for me was in the calcification area, so they can see exactly which area of it they took that biopsy from. (It’ll show up on any future mammograms as a bright point.) I wonder now if they also might use it to see if the calcification area grows? That biopsy, despite using the fattest needle and needing steristrips on it afterwards to close it, has bothered me the least!

I love the Patience Inn name. I’m not good at it but it seems like I will be learning some! I’ll try and read through some earlier posts to try and get to know everyone a little better.

@TheFormidableMrsC
The titanium tag was put in at the same time they did the biopsy to mark the spot in case they need to do surgery. I do not know if they do it in all cases or just some. I had no lump that could be felt or seen on ultrasound.

daisypond, aphrodite , LemonsNVod and TheFormidabkeMrsC
Welcome to the Patience Inn and the group - hopefully you are all just passing through, rather than staying! If you are staying for a while, know that we're all here to support you, to answer questions you may have and to listen if you need a rant.

The waiting for answers is the very worst, as your mind often races to "what if's", and it's easy to get sucked into the google rabbit hole, which can make it worse! Try to avoid if possible (difficult! I did not follow my own advice!).

I've got breast cancer, which started with me finding a lump and going to the GP. The initial wait for diagnosis was torturous, and I had to go back to the GP for some anti-anxiety medication as I was in such a state. This helped enormously, and I can't recommend it enough.

I had the initial biopsies and ultrasound within a week, and had the titanium clips put in. They do it so they can identify the location on mammograms, etc, and also so they can identify where the tumour was if it disappears during chemotherapy, so they know which tissue to remove during surgery. I've just finished chemo (21st Feb), and am seeing my surgeon on Monday for my latest scan results and surgery date. My last scan (after 3rd cycle of chemo) showed my bigger tumour had shrunk from 4.5cm to less than 2cm, and the smaller one (0.8cm) had disappeared. I'm hoping the latest scan will show it's shrunk further.

It's so hard waiting for results. Things do move quickly (even though it doesn't feel it at the time), but I got my biopsy results at the end of october, and started chemo within 2 weeks, and it's now finished (took 18 weeks in total - 6 cycles, 3 weeks apart; had EC for 3 cycles, then docetaxel for 3 cycles).

Hopefully you'll get your results quickly. I found the wait awfully hard, but once I had the diagnosis and an action plan, I found it easier to cope with. Once you're on the treatment treadmill it's easier, as I certainly felt reassured that they knew what they were doing and I just went into survival mode and did as I was told! It's only really hitting me now (mentally) what's happened, and I am trying to follow the advice I received here of being kind to myself and looking after my mental as well as physical health.

If you have any questions, please feel free to ask, as the group has a vast range of knowledge and experience, and someone will likely have an answer to any questions you may have.

I have a question. How do you know what stage cancer it is, and how do you know if it is triple negative or whatever? Loads of you seem to know all this. Did you have to ask? I’ve looked through all my information and I have none of this info. I know I have lobular in situ, and it is 12mm. The nurse said something about mine not being hormone-driven and I could keep taking HRT if I wanted. I’d only been on it six months.

I had a better nights sleep after taking some anti-anxiety meds but feel like absolute crap. Veering between well I could just end my life to get this over with and I just need to get on with this and fix it. My DD is refusing to go to sleep at night and will only sleep on me. Its heartbreaking to think I wont be here for her.

@Nonotmenori
I’m worried about Coronavirus too. I travel an hour and a half each way by tube and bus and train to work, let alone the hospital, so I expect to be very exposed to it. And there’s a background worry in case the hospital needs to cancel ops. But there’s nothing I can do about that. I’m just doing the “wash your hands a lot” stuff.

@citybumpkin
I think everything you are feeling is very normal. Have you told family and friends?

@citybumpkin your post made me cry. And I felt exactly the same. Still do sometimes. I try and remember something I read on a previous one of these threads I can’t remember who said it sorry.
But they said they wanted to be able to look their children in the eye and say they did everything they could. DS is too young to know what is going on although I do believe he picks up on things and has been out of sorts on and off since we found out.
But when my mind goes there, if this things gets me (which it shouldn’t I’m being treated to get it all) I want his dad to be able to tell him when he is older that mummy daddy absolutely everything to stay here.
So when those dark thoughts come of getting it over with myself and I don’t want to put them through all this that is what I try and remember.
It helps me. I hope it can help you or that you can find something that can.
You got this.

• sorry that should say mummy tried not daddy

@Squiffy01 Its just so hard. I fought so hard to have her and now I feel I can't even be with her. I'm trying to be positive in thinking its stage 1 and caught early even though its triple negative. But then my mind wanders elsewhere.

daisypond when they do the scans and ultrasound, they can get an idea of the cancer (eg. They can see if it's still localised, or if it's spread to the lymph nodes in your armpit).

The biopsy is screened to see if it is oestrogen/hormone driven, and also herceptin status. Triple negative means you have none of these markers. I am herceptin positive, which means that as well as the general chemotherapy drugs (which target all fast growing cells indiscriminately- thus explaining some of the nasty side effects of the treatment), I also have herceptin and perjita, which specifically target herceptin positive cells (my tumour). The smaller of my tumours was hormone positive (borderline), which means I will likely be put on tamoxifen afterwards.

The screening of the biopsies let's your oncologist determine the best treatment plan, and this is pretty individual to each patient.

Hope this helps a bit. Feel free to ask any other questions you may have. I certainly feel that knowledge is power (as long as you stay away from google and just look at proper sites, like Macmillan !).

@daisypond Yes told family and friends. Theyre all very shocked especially after the crap few years Ive had. Noone really knows what to say. I dont either to be honest.

Just had a shower. The first in a few days. Washed my hair/shaved my legs then thought I wont need to be doing this soon. Didnt feel the need to pee this morning. Eventually went to the loo and now have pains in the arse. Thinking Ive got cancer there now. Had similar pains towards the end of pregnancy. Then thought that when my DD was born I wrote a diary for the first few months. I wanted her to have something when I died. My mum didnt leave much for me and my brother. I really dont want to die