Welcome to the group @pongo1
It’s only natural to be scared and that fear can lead to negative thoughts without a doubt. I thought my journey would never end each time I went for a clinic appointment. All you can do is remind yourself that you are in the hands of the experts and they are doing what they need to do to keep you cancer free.
And of course it’s always better out of your head and voiced somewhere - use this forum. It’s been my godsend in moments of doubt. 
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Team meeting today - originally told I wouldn’t get a call till Monday and then got a call late today, for an appointment tomorrow. Thank you to everyone who posted on here and helped me get through this horrible waiting. It was much better letting stuff out on here and ( following advice on here ) I talked honestly to a trusted friend too.
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Hey @pongo1 soubds like we may be at a similar stage. I had my MRI today, team meeting is next weds with my appointment the day after. I’m just focussing on that appointment at the moment in the hope it’s still early and treatable and not spread with no surprises.
Hope your meeting gives you a clear plan and good luck x
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Well done for coming on here and saying it how it really is. Hopefully not long until you know what your treatment plan will be. Sending lots of love
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Thank you for all your replies - just a last update . I had Ct results today and got the good news that it has not spread. I know some of you on here may not get good news so I was a bit wary about posting, but perhaps it might give hope to some who are still waiting results? I DID feel more in control once they talked about a treatment plan - chemo, then double mastectomy ( plus lymph nodes on one side) , then radiation. Then hormone tablet for 5 yr+. So long journey ahead. Thank you again x hugs x
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It is totally normal to feel how you are Pongo1, it’s excruciating. I had found my lump, went into my local hospital, they found 3 lumps all in the same boob! The biopsy bit hurts like mad too. When I got the results initially I was told I’d have to have chemo and a wide lumpectomy then another consultant came in and said I should have to have a mastectomy then sent me off to decide… I decided on a mastectomy then didn’t hear from them…. I chased up the next appointment as like you the wait was driving me mad so I made an appointment as I felt like the tumors were getting bigger while I was waiting. I then found out I wasn’t on a waiting list and they were going to transfer me to another hospital! I was fuming, so I then had to go through the waiting all over again. I found walking in my local park and having a coffee with friends helped as I could break down in public places and I could forget about cancer for a while! Definitely don’t google things I just used this site and macmillan to help me along especially when I was on my own and had meltdowns I would call macmillan up. You will get through this Pongo1, I used to tell myself enjoy this time and love life as you don’t know how poorly you might be during recovery. Fingers crossed you hear something soon x
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Breast cancer is a bum diagnosis because you can have absolutely no symptoms whatsoever and go from nothing to cancer in a moment. It takes a lot to get your head round feeling worse during treatments and the not knowing whether you will be cured or not.
I think it is good to know I am not going to cheat death, but I am not going to waste time worrying about what might happen. I felt so angry when I had to have a mastectomy as the idea of it made me feel physically sick. I had immediate reconstruction which I was pleased with as I still have two breasts , one without a nipple admittedly. It’s warm and uses most of the skin from my old breast.
The downside was having a wound along my lower abdomen from one hip to the other which split open when my husband failed to push a shopping trolley off the end of a moving travelator at Tesco. It took months to heal, so whatever you do take it easy. I ran around without having any rests! Headless chicken springs to mind, but a seagull cannot be a chicken.
Seagulls
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I found that all this and the information comes at you so quickly. Just trying to get your head around the diagnosis and then something else mind blowing comes into the mix. I finish radiotherapy on the 18th Dec. Because it was Christmas I decided not to tell family and friends. Initially because I didn’t know the full story. It’s very hard to remain jolly for everyone else. I found myself slipping off to the bathroom for a shower to have a good cry. I hate the site of our shower now.
It’s so frustrating that you had to join another queue. Maybe it will work out a better outcome as the comms do seem a little off with the first one.
Hope you feel better now you have a plan in place. Good luck for your coming surgery. Let us know how you get on. Huge hug x
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I am so sorry that you are going through this. That sounds so much like my journey. I am also usually optimistic but it was bloody awful. Once i had a plan, I found it all much easier. I had the staging CT post surgery once i was found to have positive lymph nodes. (They didn’t show up on the MRI). My surgeon gave me some good advice, she said every scan or investigation can lead to another one. I had one friend that I walked my dog with every day who allowed me to be frightened, tearful and negative. My wife was also incredibly supportive. We are all here for you any time you need to vent.
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Hi there,
I’m not surprised you feel the way you do. None of us are prepared for the mental burden of a cancer diagnosis. I had the misfortune of having my cancer return and when I was told it was inoperable, I realised I was in another place - maintenance - for as long as that worked. Without treatment, I was given three months. Well, here I am a couple of years down the line! I am on my third treatment plan, having had immunotherapy and chemo and am now on Letrazole. What I have learned during all of this, is that personal research into what you’re on, can be very helpful. Learn as much about it as you can. When I was on chemo, a chance remark by a nurse when I was having my infusion, made me realise it was the steroids giving me most of the trouble, not the chemo … I got them stopped. Reading the experiences of others on a forum, I noted how bringing the chemo dose down from the high dose you start on, made you feel much better, so I got that done too. It’s your life and you want the best quality of life, so get the best you can. Our loved ones try so hard to keep us uplifted, they can’t be aware of the mental gymnastics we go through. A lot of what we put up with is for them actually.
In life, you never know what’s going to hit you … that applies to everyone, so I hope you can try to put where you are, into some perspective. You are here. You have a plan. You have a right to be scared, but try and be kind to yourself and get back your optimism. Honesty about how you are feeling is empowering … if those around you are aware of how you feel, maybe they can be more supportive in ways that really help you. I think once you’re on a ‘plan’ and in a routine, you will feel more secure than where you are at present. You are not alone - we are all out here and you can always talk to us. All the best to you. xxx
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I am scared to death…therfore I said it…
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I hear you loud and clear! Lots to be scared about. At the risk of repeating other posters - the fear of the unknown is THE worst. I see the oncologist Thursday to get chemo information and hopefully a start date and feel fairly calm because now I know it is primary and hasn’t spread. I am sending good vibes your way that you will feel same soon xxx hug x
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I don’t like the way they prance around in white coats making themselves feel better when they use all the technical terms. Once upon a time I had grade 1 cancer called glycogen rich clear cell carcinoma. I was 47 and petrified of losing my job so I went back to work as soon as I could and worked through 15 sessions of radiotherapy as I could have it near where I worked in central London not far from Grays Inn Road.
The upshot was I discharged myself decided not to have tamoxifen and went back to a cancer free life, although I had to give up the pill and had to be fitted with a terrible contraceptive cap that gave me permanent urine infections so I then discovered the Mirena coil which I had for years.
I was told not to have children as I might not be alive in 5 year’s time, that was the first milestone that they thought I might not meet. That’s the way cancer stats were presented in those days. Not very optimistic. I had a large mortgage, lived on my own and I needed to keep it going. So what happened? I survived, my rare cancer proved not to be the killer I had expected it to be as the online results of everyone dying quickly did not apply in my case.
I had a horrible experience with the oncologist | had a dour Scottish man called Graeme. He confronted me when I was on one of my sessions of radiotherapy and accused me of not using the cream as advised. I burnt a lot but I had followed the instructions to the letter although I didn’t allow them to tattoo me which made no difference as they used a mole under my arm and a black felt tip cross on my mid chest line and used them to line up the beams. anyway he told me I was to come back on a certain date and I told him I wasn’t coming back;
This was the wrong answer but I left and didn’t look back until April 2022 when I found another lump, which turned out to be entirely different from the first one - a very boring NOS oestrogen + which the first one was too. I had been told I should take tamoxifen but I hadn’t as I didn’t like the idea of it, I took it for a month or so and had a bad taste in my mouth, it caused uterine cancer and I didn’t want another kind of cancer either, and it meant I would have to see people in white coats for a long long time.
I refused mammograms as my breast density had meant they couldn’t see any lumps. I had been to see a breast clinic some years earlier with breast pain and they gave me the impression pain wasn’t related to breast cancer so I felt it was all a waste of time especially as I was in Newham and the doctors didn’t seem to want to come there, they often didn’t maybe the bus service to Newham General was bad. I didn’t want to go there either as the parking was bad and they had filthy carpets and toilets in the portakabin where the clinic was held. That was in the days when Mrs Thatcher contracted out cleaning and it was very quickly evident you needed to bring your own toilet brush and wet wipes with you.
I am old and decrepit now and I don’t give a fig about living for a long and disabled life. I am absolutely fed up with having pains everywhere from letrozole, not being able to eat fibre or use the kind of toothpaste I have for 2 hours either side of taking daily AdCal3 tablets because these interact with them to cause too much calcium in the blood it seems.
Honestly I could do with different relatives too but that is another story! Rant over I love the NHS but I love my dog too but she’s intolerable when she barks which she does at frequent intervals. I fear Seagulls are pretty intolerable tooooo
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