Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

Three days now since I had my initial biopsy so I'm patiently waiting for results and slowly thinking things through.

From what the nurse said, the dr seems pretty sure it's cancer so I'm expecting that to be confirmed at my next appointment. I don't think she would have said that if she hadn't been pretty sure.

My thoughts are now...why me? I'm too busy to have cancer! Life is hard enough without this stupid complication. Luckily my job is safe and I'll get sick pay.

I made the mistake of reading a cancer forum about mastectomies and chemo and realised I was getting ahead of myself and need to just slow down.

This is going to be the longest 2 weeks. Thanks to everyone on here you are all amazing.

Well after leaving a few messages for my BC nurse I finally got a call, only to be told sorry they have forgotten about me.
The radiologist had discharged me by error so she is contacting him to get me back on his list.
She kept apologising as she should have called me during my radiotherapy. I'm not even on the list for Bisphosphonate treatment.
She said that I will be getting a call 6 months after my first operation when I said that was last month she didn't know what to say.
I'm feeling very disappointed and frustrated.

@Awfuldefending

Well after leaving a few messages for my BC nurse I finally got a call, only to be told sorry they have forgotten about me. The radiologist had discharged me by error so she is contacting him to get me back on his list. She kept apologising as she should have called me during my radiotherapy. I'm not even on the list for Bisphosphonate treatment. She said that I will be getting a call 6 months after my first operation when I said that was last month she didn't know what to say. I'm feeling very disappointed and frustrated.

That's terrible for you. Hope you're ok

@BG2015

Three days now since I had my initial biopsy so I'm patiently waiting for results and slowly thinking things through.

From what the nurse said, the dr seems pretty sure it's cancer so I'm expecting that to be confirmed at my next appointment. I don't think she would have said that if she hadn't been pretty sure.

My thoughts are now...why me? I'm too busy to have cancer! Life is hard enough without this stupid complication. Luckily my job is safe and I'll get sick pay.

I made the mistake of reading a cancer forum about mastectomies and chemo and realised I was getting ahead of myself and need to just slow down.

This is going to be the longest 2 weeks. Thanks to everyone on here you are all amazing.

Other people told me that this period of waiting is the worst part and you’ll feel relieved once a treatment plan is in place. I went through it a few weeks ago, and can say I agree with them.

Someone sent me this, about finding a positive from difficult situations, which I found useful - I’ll share it in case others can get something from it, too www.positiveintelligence.com/how-to-convert-this-crisis-into-a-gift-and-opportunity/

Best wishes

Hi everyone, I haven't been on for a while and just thought I'd pop back on to give you all an update. I was diagnosed with breast cancer in October 2019, had 3 rounds of EC and 3 rounds of docetaxel with herceptin and perjita, followed by surgery (lumpectomy plus sentinel node clearance). Due to covid, I was the last person to be operated on at wythenshawe hospital before all of the breast cancer operations were switched to the private spire hospital. Also due to covid, the surgeon wasn't allowed to do the symmetarisation part of the operation so I was left with a c/d cup on my cancer side and my gg boob on the other side. It was a very noticeable difference. Once I had recovered from surgery I had condensed 5 blasts of radiotherapy and then herceptin until Jan 2021.

Having cancer made me reevaluate a lot , particularly how unhappy I was at work. As the prospect of returning in Nov 2020 became more of a reality I decided to seize the day and do something about it - I put my cv on a couple of specialist recruitment agency sites and (unbelievably) was headhunted for a new role which I started in March. It is wonderful and I am so glad I took the plunge - I know that if I hadn't had cancer I would still be at my old job, and would still be complaining about it every day!

I wasn't coping well mentally with my body image, as the asymmetry of my boobs was just so noticeable. Having spoken to my BCN and surgeon, I found out that the wait on the NHS was at least another 18 months to 2 years (minimum). As I've already had a 1 year wait, I just couldn't cope mentally with this additional 2 years. I've been really lucky to be able to pay to have the reduction and am currently in hospital (hoping to go home later today). I can already tell (even with the swelling) that I am much more symmetrical and feel better already- just got to shift the steroid weight now.

This forum has been an enormous source of help and support, and now that I'm hopefully moving towards a better place mentally, I hope I can contribute a bit more and help others in the same way I was helped.

Wishing everyone a relaxing weekend. Xxx

Zorgoth I wanted to let you know that your message has helped me as I’ve been re-evaluating things too. Congrats on your new job!

I’m also having concerns about asymmetry, but my surgery won’t be for a while so I have a lot of time to think about it. Wishing you a speedy recovery from your operation.

It sounds so trite, but my cancer diagnosis and treatment was such a bomb dropping in not just my life, but my little boy and husband's lives, and everyone else's, it really made me reevaluate. I used to like my old job, but got a new boss who was so awful (phoning me during chemotherapy to say I was going to be downgraded and that I should consider voluntary severance was a particular low point!) and was awful to work for. It felt very odd that my last day at work was the day I left before chemotherapy began - with treatment then covid ad shielding, I only went back to clear my office!

I really think I needed a new start, where only 3 people in the company know about my cancer and treatment, (rather than everyone!), and only 1 person knows I wear a wig! I started in March and was worried about chemo fog/brain and fatigue, but access to work helped put support in place and I've adjusted really well. Sometimes I do "attend" zoom meetings with the camera off, so that I can lie on the bed, but this time last year I could never have believed this would be my life now, as I'd only just finished radiotherapy.

I do think continuing with the anti-anxiety drugs is the way to go, as I do worry about it coming back, and they help me to keep on top of the anxiety.

Am hoping to go home today - very bruised and sore, but the pain is under control and I can already see I'm going to be more even! Just got to start dieting to lose the steroid chub now - have signed up for the safe fit trial!

@Zorgothslugofdoom I can't believe that anyone would be so callous to ring you during treatment - some people are such dicks!

I hope your recovery goes well

I'm waiting on biopsy results and possible cancer diagnosis.

Can I just ask you lovely people....when I go for my appointment and if it is cancer will they have an idea of what the treatment plan will be from that point on?

@BG2015

In normal times they will have had a meeting to discuss your results and treatment, if needed. At the consultation, there would be a CNS or Macmillan nurse for a chat afterwards to answer questions and find out if you needed any additional help, such as counselling or advice with financial problems.

Bur some trusts are v overstretched at the moment, with CNS working on other wards, to help with the backlog. My monitoring routine has been postponed by 7 weeks, which, hopefully, means I'm low-risk and someone newly diagnosed has taken precedence.

Whatever happens, and you still don't know for sure, you will feel better when you have a plan, even if it's bad news. Till then, stay away from Google! New drugs are coming on line all the time, especially for bc, and Google stats are often 10 years behind.

Good luck!

@Thymeout thank you so much!

I've avoided Google

@BG2015
When I had my biopsy results appointment a few weeks ago the consultant had a treatment plan and talked me through it. It focused mainly on the surgery but also mentioned that I'd likely not need chemotherapy but would need radiotherapy and medication. These won't be confirmed until my post op appointment next week. She also booked me in for my op so I knew the planned date. I also saw the breast care nurse who gave me more information and took MRSA swabs and I also had a blood test. There were plenty of opportunities to ask questions. I was lucky, my DH was allowed to come to that appointment with me, the breast care nurse suggested it when I saw her after my biopsy. What happens will probably vary between hospitals and has changed because of Covid.

@barkydog I'm going to take my mum with me I think as my DP, although great and a massive support, won't think to ask practical questions, whereas my mum will.

My mum will be thinking like a woman. Plus my DP is currently suffering with sciatica and hobbling about on crutches - we're a right pair.

He had cancer of the kidney last year and had his kidney removed in August.

Since covid hit we have had a truly awful time.

@BG2015
I'm sorry to hear about your awful time recently. Good idea to take your mum, my DH isn't so great at asking questions but is very good at remembering what was said. I hope your appointment goes as well as possible next week, it does feel a bit better once you have an idea what you're dealing with

@BG2015. So sorry to hear about your DP. COVID has been a struggle for many of us. I went back to the Breast Care Clinic for my biopsy results so I didn't get a treatment plan then and there. A week later I had an appointment with the consultant at the hospital and she went through everything in detail and gave me a date for my operation - which was about a week later. Like barkydog, I also saw the Breast Care Nurse (at the hospital) and she gave me a bunch of leaflets and answered all my questions. She also gave me contact details so that I could get in touch any time. Because of COVID, I found it easier to email rather than phone as they were so stretched doing other stuff. Someone usually responded to my emails within an hour or so.

@Awfuldefending. That's awful - hope you are back on track soon, I feel like I should get in touch with my BCN and make sure they haven't missed anything. I was never offered Biphosphonate for example and I never actually spoke to an oncologist through all of this - just one of his students I suspect.

@Zorgothslugofdoom. So good to hear your update.

Hi all

Went for my pre op assessment and my BP was high. Going to see the nurse at the GP's on Monday to have it checked but I've borrowed dad's BP monitor and it's permanently high. The BC nurse said my op on Friday will be cancelled if it's too high. I'm really panicking now. I'm walking every day, drinking lots of water, have reduced my wine intake and food too.

Sorry about the me post. Will catch up later.

HC x

@RocioMartinez the reason I've been offered Bisphosphonate is because I'm over 60. I did have an appointment in February with the oncologist
but only a telephone call from the radiologist before I started my radiotherapy. But as I was discharged I wouldn't have had any more contact.
If I've not heard anything by next week I'm going to phone again.
Please phone your BCN just to put your mind at ease. It's very difficult because you can't see the cancer you don't know how you are doing inside.
I left it because I thought I'd not mither but I'm kicking myself for not contacting earlier.

@Awfuldefending - long time since I've heard the word "mither" but you're right, we all need to keep mithering as far as making sure we're getting the right treatment is concerned.

@HumphreysCorner No need to apologise posting about yourself my dear! I hope the blood pressure issue can get sorted in time. The uncertainty must be a stress in itself though. Are they just waiting to see if it will resolve itself?

@TopOfTheCliff Well done on getting through the colonoscopy - hope you've been enjoying a full range of food since!

@Zorgothslugofdoom Great update. I think it gives everyone a little boost to hear good news from others whatever their own current status & frame of mind.

@BG2015 When you have your next appointment, they may mention possible treatments but don't expect to come away with an exact programme of dates etc as they might not have got that far. Thymeout mentioned a breast cancer or Macmillan nurse - if you don't get to speak to one, you can speak to one over the phone or by onlince chat through the Macmillan nurse if you need to.

Morning all, I've been quite lazy for the second half of last week. The gym session took it out of me and I've been hobbling around ever since. My muscles will have just recovered in time for this week's session.
DD2 is on her DofE expedition this weekend and DD1 has worked two long days so DH and I have been on our own with the dogs. It's a shame it hasn't been nice enough weather to go anywhere really but I am cooking a roast dinner today so youngest can look forward to it on her 6 hours hiking before we pick her up.

@HumphreysCorner I was put on bisoprolol after my last round of chemo because my heart rate and BP were both high. It has made them come down to a more reasonable level quite quickly.

@BG2015 My treatment plan changed between one visit to my oncologist and the next due to my case going to the MDT meeting but I did have two cancers and they were deciding which to treat first.

@HauntedDishcloth I'm hoping it will resolve itself. Will see what the nurse says on Monday.

@MrsPnut I'm sure it's something to do with the chemo but I'm trying hard to exercise and lose weight to get it down.

Hello all. Coming by to try and catch up, apologies in advance to people I miss.
@TopOfTheCliff glad to hear your colonoscopy results were normal. @JeanneFrench can quite understand your anxiety about feeling unwell and having to stop some of the activities that were helping you make friends in your new country. It seems people have very different reactions to chemo; my first time round, I had some real lows, but also intervals of feeling pretty good and being able to enjoy short breaks and days out. Wishing you as easy a ride as possible.
@Acinonyx2 hope new chemo regime continues to be tolerable.
@Littlestelephant you are having such a long wait for results; hope it's not too much longer now.
@Babamamananarama congrats on getting through the stem cell harvest. Hope these days of inpatient chemo aren't being too horrid.
@Thymeout sending warm wishes while you wait for your scan results.
@Zorgothslugofdoom lovely to hear from you, and well done for leaving your old job and getting a lovely new one! Also on getting balancing surgery - wishing you a good recovery.
@HumphreysCorner that is a bummer re high BP. Hope it turns out to be very manageable. Is it making you feel unwell?
@Awfuldefending that's rubbish that you got lost in the system - very bad record-keeping obviously.
Welcome and very good wishes to @Bin85, @Elle200, @BG2015 and @TriplePositive. Elle I'm so sorry for your recent loss.
My new drug treatment has been paused for a week because of low platelets. I was relieved tbh because I started a nasty 2-day migraine on Thursday and was quite sure I would throw up the capsules immediately! Am much better now and had a nice walk with DP this morning.
@Thymeout we're not doing the garden makeover ourselves, it's quite a big landscaping job involving much demolition, a cement mixer, skips, wall building etc. Actually getting in and out of the house is challenging at times!
Sending love to all x

@Zorgothslugofdoom thank you for passing on your story. Your treatment sounds very similar to my treatment plan. You’ve helped me see light at the end of the tunnel.
@Bg2015 I was told my treatment plan in some detail at my diagnosis. The only uncertainty at that point was whether or not I would need Herceptin. As I do need it, I’m having chemo before surgery.

I have a couple of questions for everyone:
I’m moving from EC to Phesgo (Perjeta and Herceptin) and Docetaxel. My info says that on the first cycle I’ll need to be observed for 6 hours after the treatment. My appt is in the afternoon. Am I really going to sit and wait for 6 hours into the evening in the hospital, or have I misinterpreted that?
I have drunk wine in moderation during my EC cycles (once I’ve got over side effects). Should I avoid wine for this new chemo regime?
I have to take steroids 24 hours before my new chemotherapy and I need to lots of 2 pills a day. Am just thinking that if I took my steroids at 2pm then again in the evening, I probably wouldn’t be able to sleep so what to do? Will also ring hospital for advice.

@Lunificent When I changed from FEC to the Docetaxol chemo regime, I had two appointments on two consecutive days - the long observation one first I think. I totally forgot to take steroids beforehand so they gave some via IV. It would indeed be unwise to take them late in the day. Definitely check what's going on.

I'd probably avoid alcohol for the first 10days of the first cycle to see how you're doing, unless you really feel like you need wine - whatever gets you through it! I don't think you need to avoid it completely unless you're taking any meds throughout each cycle which contra-indicate it. I'm supposed to be on a healthier diet now I've finished chemo & had my mastectomy. Caffiene-free diet coke is now my treat drink - how sad is that??!

@Bloodybridget Commiserations on having an awful migraine. I've found I've not had one for ages which I think might be due to the chemo putting me into menopause so less hormonal peturbations. Suppose I'd better take that as a silver lining!