Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Staffing makes such a difference, doesn't it? My consultant (wonderful woman) had the temerity to retire after I'd seen her twice! Alas, she hasn't been replaced, and I just don't feel as confident being under a registrar. I'm probably being silly though.

Hi I have been lurking for a while - but feel the need to say Hi today.
I was diagnosed Feb 22 2018 with Stage 2 Invasive Cuctal ER/PR+ HER2-. Kj67 - 14% Breast Cancer. I had 3 tumors in my right breast and 5 positive lymph nodes.

on the 27th of March I had a bi lateral mastectomy. Lucky for me my onco test did not indicate Chemo so I went straight to Radiation - I had 25 sessions then I started Anastrazol and Zometa infusions.

But I have had sever bone pain so changed to Lestrazol. These drugs and ongoing treatments are tough.

Reconstruction Surgery December 13th and still not 100% from that - I had had big hopes that it would be a quick recover with perfect new boobs - but apparently that was not to be. Plus the Radiation did a number on my skin so I don't think the right will ever look or feel normal.

I grew up in Scotland but am now in the US so I am sorry if I use different terminology.

Evening all. Just catching up It's been a busy day on this thread!

I am kind of annoyed that I missed whatever weirdness was posted, given the eloquence of pandora's response!

TQ I just wanted to say how much I admired your restraint and gravitas on the thread by the poster whose SiL had cancer. I had to walk away from it and glad I did now, seeing the outcome. MN can be a weird place at times; I do so appreciate the solace and relative normalcy of this thread. I mean, none of what we are all going through is normal by any stretch of the imagination but you catch my drift.

To dulce, Peapod, iVampire and anyone else awaiting colonoscopies - I hope it all goes well (and that you get your appointment soon if still waiting). Cancer brings so many indignities to our lives, I hope that the procedure is not too awful. My DM had a colonoscopy last week and she said whilst it was unpleasant, the local anaesthesia meant that it wasn't painful.

KBG I am so glad for you that you are done with chemo. I can completely understand your mixed feelings.

@purpleunicorns thanks for the gin that you gave us all; sending some right back to you. I also have an appointment with the oncologist on 1 April and am going to ask the same question, although I suspect my answer will be a shrug of the shoulders as they are still throwing treatment at me and they just don't know yet. I dyed my hair pink when I got my diagnosis. I might go purple next in your honour, although my once long and thick hair is now frizzy and fluffy thanks to chemo so I probably ought to wait. Sorry for waffling.

noodles that's a lovely typo at the very end of your lovely post xx

Flyingarcher no kicking from me. I am also not surprised you have the glooms.

Hello to BitofFun - we seem to keep bumping into each other these days

GenX I am still confused with UK terminology so don't worry! Sorry that rads has affected your recon.

I am not very good at replying to everyone's posts. I am not quite sure how people do it! Do you have a notebook as you are going through the thread?! But love and light to everyone on this thread.

I had #5 out of 15 rads today and am feeling shattered. does it get worse than this?! My body is aching, my brain is exhausted but my mind won't switch off. DH is snoring so I am going to watch some TV and have a sneaky glass of

Night all xx

Just checking in - can't sleep! I too have wondered about the notebook theory, I really struggle to keep track. I'd like to blame chemo brain but I've always been a bit forgetful!!!!

I just wanted to say ‘hi’ to GenX2 and welcome to the club no-one wanted to join.

I have a different cancer, so whichever breast cancer terms you use, it’s all a bit baffling to me! I’m sure other posters who unfortunately know the ins and outs will be along soon

GenerationX2, how are you feeling in yourself? Welcome (but I'm sorry you find yourself here) to the thread x

Morning all 

Hello @GenerationX2 and sorry you have to join us! I speak fluent Scots but not American so whilst am also in the BC camp it sounds like you know more about what's going on than I do (isn't hard lol) You'll find a safe place here x

Thought I'd pop on to tell you I had my first hair cut in preparation for this work so tonight. What a laugh, I've nothing to cut but it made me feel better and they did it for free bless them

Hi all. I havent got a diagnoses but i am awaiting a colonoscopy with ive been informed is likely to be end of april/begining of may. I have had symptoms for 2 years but dr kept saying ibs. Eventually agreed to a colonoscopy in September after i had some bleeding. I had consulant appointment booked for Jan 19 but was heavily pregnant so had the appointment 6th march.

Im driving myself insane with every ache and pain.

My mum is currently undergoing a trial at the royal marsden in london for ovarian cancer, 3rd line treatment.

Flying we ALL get the blooms as some pint or other, we wouldn't be human if we didn't, I hope you're feeling a bit better today

Noodles my mam had a stent put in yesterday and came home this morning. She has a 4 week sick note so she'll be pulling her hair out after a few days with nothing to do I'm glad you have your lovely dog back 🐕

Welcome Genx I don't have breast cancer but a lot of people on here do so you'll get lots of advice if you need it

London don't worry about keeping up with everyone just let us know how you're getting on. My hair is like cotton wool at the minute so it looks like I have candy floss stuck on my head Good luck with your appointment. It's good that you're still having treatment, fingers crossed it carries on working for a long time

That's a long time to wait MrsEd. I used to be the same with aches and pains, every headache I thought was a brain tumour I think when you're worried already you assume the worst. I won't tell you not to worry because obviously you will but it's more likely to be something other than cancer

Hi all,
can I reluctantly join you? I had investigations including punch biopsy etc for cervical issues a while ago, the consultant said she thought the issue was "higher up" and referred me back to gp.
Have had no further investigation but ongoing stomach and back pain. A couple of weeks ago I had severe pain and was diagnosed with a gall bladder infection, I had blood tests that showed a raised protein in my liver. I don't really know what protein or how high etc but the gp said he wanted me to have an US and referred me saying it was probably gallstones or sludge.
Had my scan today and I have no stones or sludge but do have polyps in my gallbladder. Small ones are always benign growths apparently, larger ones (I think he said around 1cm and over) are more likely to be malignant, but the radiographer went from chatty to v serious and just said he was referring me straight back to the gp who will discuss what happens next and who I will see next. I asked him if it was something to be concerned about and he just repeated I would need to decide what to do next with my gp and whichever team he refers me on to? So now I am sitting on my hands having had a v quick Google which was probably the worst thing I can do....

Welcome GenX2. Everyone is lovely here whatever you are going through. Would be interested in your thoughts on reconstruction as it’s something I will have to decide upon in the future. Just finished Radiotherapy on Monday.

Has anyone else had really itchy skin after radiotherapy? Mine really itches on my back/shoulder and woke up scratching it the other night which obviously is not good.

Sorry I too am rubbish at remembering everything although I have read it. I really struggle to remember names and words these days. Hope it’s just the chemo effect.

Hugs to all

Xx

Oh woton just popping back on to say please do not google. It is honestly the worst thing you can do and you will drive yourself potty.

When do you think you will you be able to see your GP?

Xx

LondonHuffy
Thank you. . I won't deny I was upset by it a bit but then I thought this woman is just so self-absorbed there's really no point. She just won't get it.

MrsEd The waiting is the worst bit... Hopefully it will remain IBS. How's your mum getting on? I'm on a 3rd-line trial. I had a scan after 2 months but it was inconclusive. 2 tumours marginally smaller, some bigger.

Purple How are you doing? Glad to hear your mam is OK
GenX2 sorry you find yourself here. We're all reluctant participants.
Woton sorry you're not getting any answers. It's very difficult when you don't know what's happening. Fingers crossed.

I'm having a burst of energy this past week. I feel more motivated and energetic - more so than I have in a year. Weird. The trouble, is I don't trust that feeling..

twitterqueen thank you. She has had one session so far and as always the steriods kept her awake for the first 3 days but so far she is ok. X

GenX I wonder if your skin just needs more time to recover frothed radio. I had radio following my lumpectomy on the right last August; then I found a lump on the left and had a mastectomy. They won't touch my right breast to 'even me up' until at least a year post radio as my surgeon said it takes that long for all the blood vessels to settle back down; interesting that they have different views in the US? Anyway hopefully as time goes on it will steadily improve xx

London yes it's great to know I'm done with being poisoned! But won't feel like celebrating in any shape or form until I'm back on my feet post 'grim week '

TQ I feel weirdly not too bad which I also find worrying but I'm hoping it's just because the chemo has finally left my system. If I do too much I end up as sweaty red mess and collapse on the couch but it's better than before when I just couldn't be bothered to do anything.
I keep getting the odd painful twinge in my abdomen which panics me a bit but otherwise not too bad. I'm trying to get my house as decluttered as I can while I can

Did you manage to get your blood results back?

Whoops 're typo Londonhuffy! My iPad is playing up by constantly refreshing, so I am using my phone (with fat fingers!!)
I wasn't too bad with the first couple of weeks of rads, obvs just breast for me though. Week 3 really hit me and I am only now (3 and a bit weeks after it ending) feeling less totally exhausted. That said, I sat down with a book this afternoon and woke up just when I should have been at school picking up my youngest!!

purple glad your Mam is out of hospital. The stents will probably give her a new lease of life. My Dad had them, but after a mild heart attack, so I think the heart attack affected his energy initially, but he realised after that he had probably been very gradually declining for some time as he had renewed energy! Glad you are feeling more yourself though. Don't overdo the decluttering!!

TQ I missed the posts mentioned. I hope you get some answers regarding your numbers etc soon from your team.

knicker I wondered why you were waiting so long after your last chemo for the MX. At least it means you will be that much fitter for the op I guess. My op (as I hadn't had rads by then) was 5 weeks after my last chemo. I think the recovery from that followed by radio has taken its toll as it was all hitting me immediately after 7 rounds of chemo. Will they scan you to check the effectiveness of the Docetaxel you've been on so you are not worrying whilst waiting for the op? The Docetaxel had a great effect on my tumour, so much so that I had to have wires inserted to point to where it was... I hope you are not too grim this week x

bitoffun I hardly ever see my Oncologist, I have seen her twice since my diagnosis in June (mid way thru chemo & last week after rads) She is quite brilliant in a no nonsense way though and I am glad she is overseeing my care. How do you find out if/when another Oncologist will be overseeing your care? Fancy her retiring mid way thru treating you... the cheek! I'm sure you get the same care, but can understand it to be unsettling for you.

Woton sorry you find yourself here. The waiting is the worst part and I'm not surprised you are panicked after getting that kind of feedback. That said, all of my appointments came from my hospital consultant/surgeon regarding getting a BC diagnosis, so maybe if the GP is contacting you it indicates it is less serious. Fingers crossed anyway. The waiting is awful though & def avoid doctor Google or you will panic yourself even more. Chase up with the GP's tomorrow & let us know how it goes. We're here while you wait x

mrsT my skin has felt tight after rads... It went a bit sore in the crease under my boob and a patch above my boob and the nipple has been excruciating. I have been slapping on medi honey provided by the hospital on the sorest bits & moo goo generally. Also I had some clear jelly stuff that came in a mushroom shaped pot for my nipple to stop anything chafing & padded dressings too. They seem to have don't the trick.as it is improving now...

flying thanks for the message, I am taking it a day at a time at the moment. I started tamoxifen on Saturday too. I hope the anxiety doesn't last long.

Welcome GenX sorry you find yourself here. It is a very supportive bunch though.

Good luck for all the colonoscopies/tests coming up...

I hope everyone has had a good day
Xx

Purple have you stopped chemo altogether now or are you having a break in the hope of getting into the trial? Apologies if you've already said it but I seem to have missed it

Noodles BCN said to me today when she was examining me that my skin was very soft. Blimmin well should be with the amount of moisturiser I am slapping on. Radiographer on Monday scared me a bit by saying broken skin can happen in the weeks following rads finishing so hoping moisturising will avoid that. My skin elsewhere is dry and I think that’s just the ongoing effect of 7 rounds of chemo.

Xx

My sinister sachets have arrived.

Dulce I'm not having any treatment now. I was hoping to get on a trial but my kidney function isn't good enough and my oncologist says I'm too weak so it's just a case of pain management now. I see my oncologist on Monday although I'm not even sure why as he's not much use,my Macmillan nurse sorts all my medication for me

Have you had genetic testing done and are you having treatment? You have probably said but I get lost off with all the posts on here

Good luck with the sachets Ivampire. I hope they aren't as bad as you're thinking they will be

mrsT Hopefully you will be ok. You had a mx didn't you? I had a lumpectomy, so have a crease under my breast when it is flattened in a bra (even though I haven't yet worn wired ones since my op) the guys on the radio team advised not to wear a bra at all, the females realised I needed to wear something though as if i didnt then it became really painful due to movement/jiggle of the breast. It is hard finding a happy medium so I have had a bit of support (DD breasts) but they are not too squashed & exacerbating the soreness in the crease. Poss with it being a mastectomy for you avoids some of these issues. I ended up wearing a crop top type non wired bra over an underwear vest top (over jelly/padded dressing) thank goodness I can go back to the cropped bra tops again now & looking forward to putting a nicer wired one on at some point when recovered more!

noodles and Mrstraveller Thanks for that info on rads. It’s hard to know what to expect. I just finished session 5/15. Trench Tit (as we affectionately named it) is rock hard tonight. Is that normal?! I am slapping on the aloe vera. Should I put moisturiser over the top of that from now on? I am a bit sore in the under boob area as well. I had some nipple cream in a beauty box last year before I was diagnosed. I nearly chucked it as I didn’t need it and none of my friends are of child bearing age/ inclination. V glad I saved it now!

iVampire I am glad the Sachets of Doom (as DM called them) have arrived. DM struggled with the sheer amount of liquid she needed to drink but the more water you have between sachets the better, apparently. Hope it err... goes ok (no pun intended)

mrsed the waiting is awful. I hear you on the fear when you get an ache or unusual pain.

woton the temptation to Google gets to everyone. I scared myself stupid in the days leading up to and post diagnosis. Then I found a Facebook group and then these threads. Much safer and kinder on yourself to ask here or to ask your medical team. Easier said than done, I know

Hugs to all x

Noodles. Yes I had left side mx and lymph node clearance. I have avoided wearing a bra at all at the moment. The only time I did wear one was when I tried a short run on the treadmill. I’ve got my prosthesis fitting next Tuesday and instructions say to wear a comfortable bra. I can’t think any would be comfortable at the moment. I’ve already put off the fitting once though as first appointment was in the middle of the radiotherapy. I’ve been looking at a website called flatter fashion as I think in the main I should be able to get away without a bra. I’ll probably just need a bra for running and certain clothes. I think in summer I will have to wear bra/prosthesis more. In winter I think I got away with wearing a woolly,colourful scarf with every outfit.

London. I’ve got aloe Vera gel which I put on after each treatment as it was quite cooling. I’ve also used Aveeno cream and E45. I sometimes have put aloe Vera gel on followed by some moisturiser.

Xx