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.

@cleanasawhistle I was prescribed letrozole after having a wide local excision for mucinous breast cancer in October 2016, followed by radiotherapy.
I found the side effects pretty awful to be honest, with pain in my bones and got to the stage where even turning over in bed hurt. I put up with it for nearly 2 years, and then when at the breast clinic I discussed it with the bcn, she suggested I cam off them for a treatment holiday. Within 4 weeks the pain and I also realised brain fog had lifted. I was then started on tamoxifen instead and the difference has been amazing. Now I just have the normal pains of being an unfit overweight post menopausal woman in her 50s 😉 I’ve not experienced hot flushes either.

Lovely to "see" you greylady, I was wondering how you were doing. I think it is important (without being patronising) that people understand that there can be life after breast cancer.
I'm away for the weekend with DH, it's been lovely but is a little overshadowed by my sore back. I'm usually a very open person but only my boss and DH know I'm waiting for these bloody results.

Ah, weebarra, I recognise your name! So sorry to see you here.

Morning folks,just checking in to wish everyone a peaceful Sunday 💐

Diagnosed 2014 with breast cancer. WLE and clear SNB, 15xrads the tamoxifen for a couple of years. Switched too soon to anastrozole so ovaries and tubes out 12 months ago. I have my final mammogram in April. I also take vitamin D and calcium because the anastrozole has caused pre osteoporosis.

cleanas I think letrozole and anastrozole are similar and I had terrible bone and joint pain, last summer was particularly difficult. I’m hoping to see an improvement when I come off treatment this summer, assuming a clear mammogram!

weebarra I was really sorry to see you mention recently that you’ve been having back pain, it’s the thing we all fear happening after some years of being ok. I really hope it turns out to be something else.

Thinking of leslie everyday and her family

So happy to have found this thread, I knew there must be one somewhere. I went to my doctor a few weeks ago with a sore, red breast, was admitted to hospital by the end of the day and when I left three days later had a diagnosis of Stage 3 Inflammatory Breast Cancer. It is also in two lymph nodes but the doctors are very positive and say the aim is to have me cancer free within a year. I am in shock tbh, Chemo started on Monday and I have been feeling shit. The plan is for four months of Chemo, then surgery then Radiotherapy. DH is being amazing, my three kids (two at home) are finding it hard. I am in Australia and am very happy to have things dealt with so quickly but I keep wondering what has just happened to my life......

Welcome Snow but sorry you have to be here, I don't have breast cancer myself but there's lots of people on here who do who will hopefully be here soon to give you any advice you need.
When I was having chemo I felt rubbish for the first 4/5 days then started to feel a bit better, although it feels like it you won't feel like this forever

Thanks for responding Purple. It's night time here so I'm off to bed to try and sleep and will catch up in the morning.

Snows Welcome, but sorry you find yourself here. @Simmi1 is a fellow Aussie on this thread. It's great that there is a plan in place for you.

Thanks for the info Using and MrsR

Since taking Letrozole I have noticed weight gain and tiredness.

Hello Cleanasawhistle, I also have a Breast Cancer Diagnosis, I was taking Anastrozole, but had horrible side effects so I have just switched to Letrozole and am hoping for a better experience. My Oncologist said that everyone reacts a little different to each class of the AI, so we will see how it goes. One good think of Letrozole, she said to take it at night and it has really helped me sleep so that is a plus.

Welcome Snow, I am sorry for your diagnosis, but glad to hear they are moving fast.

If I can give you one piece of advice at this time when you are I am sure feeling overwhelmed, it would be to find a support group or a private therapist if you can, also if you can find a person for your DH who he can talk to, someone who will focus on him rather than always ask how you are. My DH's brother was that person for him and it was really helpful for him. Otherwise our DH's become so vested in caring for us they don't take care of themselves.

cleanas yes I’ve definitely noticed weight gain. I was a size 12/14 when diagnosed and am now 14/16, but I’ve been through the menopause whilst on treatment and have noticed the most difference since having my ovaries removed a year ago. I definitely feel the drugs have been a factor though. I’m also pretty tired still after five years and my blood pressure has got very high, I was hospitalised with it twice. I know I’m very lucky to have got this far but it’s not all been plain sailing.

Thank you Generation and Gilbert

Yes I also went through the menapouse while having chemo in early 2015.
I had gained some weight while going through treatment but managed to lose it but since changing to Letrozole the weight is going on and finding it hard to lose.

The tiredness is getting to me but I will start taking my tablet in the evning and see if that makes a difference to my sleeping at night.

I will be 5 years down the line at the end of this year.
There are a couple of other issues which I think need looking into also but these have been happening before I changed medication.....I strugge to swallow sometimes and feel like food gets stuck in my chest,but lately that has changed to more often and is painful sometimes.I also get pain occasionaly in my ribs on left side,same side as my cancer .

Hello Snow, I am in a very similar situation to you both in terms of diagnosis and young children. I have just finished 5 months of chemo and am now having radio before surgery. Where in Australia are you? I’m in Melbourne. Happy to answer any questions you may have xx

Hi Simmi. Nice to hear from you although nobody wants to be in this club, I am in Sydney, though still hoping that our planned and paid for Easter weekend in Melbourne can still happen. I am due round 3 of Chemo the day after I get home. How have you found your medical treatment? I am currently getting bills for a whole heap of tests I had as an inpatient prior to diagnosis which I thought went straight to BUPA for payment so am a bit stressed by that.

Hi Snow, yes I also had to pay for the diagnostic tests although bupa paid for all the chemo. Which chemo regime are you doing? Easter sounds nice - we have a beach house on the Mornington Peninsula so we’ll be down there for Easter. I then have my surgery scheduled for 24th May - I’m having mastectomy with immediate reconstruction so it’ll be a big one 😫

Not very often here now, but still read from time to time. DX in Jan/Feb 2011 with stage 2 HER2+ breast cancer. Had 4 x FEC and 4 x Tax, lumpectomy, portacath for Herceptin, rads. Re-operation a couple of years ago for a (thankfully benign) skin tumour that was probably a result of the rads. Now meandering through life complete with the usual scars, NHS tattoos, peripheral neuropathy, the eek of some hair loss at the 7-8 yr point (a timescale where hair renews itself naturally...and of course it had all 'renewed' after chemo...). But very much alive. Thankful for teams, and the fine support from this thread in those early days, and others elsewhere. Waving to those who may remember me.

dulche - wishing you all the best today!

(Yours is today, isn’t it?)

amberlight you don’t know me as I’m fairly new here, but I recognise your name from reading back through earlier threads, just after I was diagnosed but before I got brave enough to join in myself... I was wondering how you were doing, and it’s great to hear things are good. Many thanks for all your contributions to this thread - you will never know what a difference they made to me in the desperate early days post diagnosis!!

Hi all. You are all so lovely and supportive.

I had a lumpectomy almost 3 weeks ago but a haematoma a couple of weeks ago which is a pain in the arse.

Just found out this morning that I need chemo as well as radiotherapy so feeling a bit blue. They initially seemed to think that radiotherapy would do the job but the ER, HER2 and PR results are all negative so chemo needed too. Just waiting for oncology appt now. Not sure what to expect.

Hi all

Thank you for the new thread TQ

I was diagnosed in 2016 with a Neuroendocrine tumour in my Small Bowel. I've had a hemicolectomy and large portion of my small bowel removed. The cancer had spread to a couple of lymph nodes so currently on surveillance for the rest of my life and they will deal with recurrence when it shows itself.

Wishing you all well

cleanas I have had rib pain, right underneath my affected breast. My bcn said it was damage from rads and to use ibuprofen gel directly onto the skin around it. I’ve also just abandoned wired bras. I had been getting that pain and also pain underd my arm which caused me a few sleepless nights until I switched bras and I have no more pain. The end of the wire had been sticking in near my snb scar.

amber how lovely to hear from you, I was thinking about you just last week. I’m very pleased to hear you’re well.

Harry sorry to hear you'll need chemo too - my chemo was also a late decision and unexpected so I know how you feel. I've just had my 6th and last session. Many of us on the thread have had chemo for BC and will help as much as we can with advice on side effects etc but sending you hugs for now xxx

Iv thanks but it's next Monday. Still have all the prep to look forward to 😤

Thank you @KnickerBockerGlooooory, I really appreciate that. I've been OK ish most of the time since diagnosis but this has made me very tearful, I don't know why. I'm trying to look at it as just another treatment but perhaps it's the fear of the unknown that scares me.