Many thanks for letting us know. I am absolutely delighted to hear your positive news. At least you are now moving forwards with a plan. Do let us know when the rest of your surgeries will be so we can all send you our best wishes.
Sending lots of love
So great to hear everyone is moving on with treatment!
I had my results and I’m really grateful to my surgeon as he managed to remove all the cancer from my breast and only 3 out of 18 lymph nodes had cancer. I’ll be meeting with my oncologist in a couple off weeks as I will be having chemo and then radiotherapy.
I also have spoken to my gynaecologist this week, he found two tumours on my ovaries and also I have endometriosis. The tumours are borderline cancer so he has decided to do more surgery and remove the scarring, womb and cervix. I’m really hoping it’s done by keyhole surgery! Like everyone it’s going to be a year of active treatment but I’m okay with it.
looking back to when I first found out I had cancer, I’m in a completely different mindset, I’m just so grateful to be able to be treated when there’s so many that have it a lot worse!
Im getting out and about more as well, today I went to see my son’s university that he will be going to come September. Getting some normality back 😊
so grateful to you all for turning a really difficult lonely time into something positive! Xx
Many thanks for asking. I work out every day still (using VR fitness lol). It’s been so good at combating side effects. I absolutely hate exercise normally so it’s nice to be able to stick this out. I actually did 1 hour and 45 minutes solid this morning!
Good to hear you’re starting RT soon. It’s a pain that it’s fallen in Easter but you’re right - the sooner you start, the sooner it’s over.
I haven’t had any bone density scans but I have been referred for an infusion of biphosphonates and calcium to strengthen my bones and prevent osteoporosis caused by Zoladex. Funny how each area do things different.
I agree with you, it is lovely to see how everyone has moved on from the early dark days. I don’t know about you but when I wake up now, it’s not the first thing I think about (whereas at the start, it consumed me).
We have all moved forwards with our treatment plan and it does feel a million times better than those early days.
Please do all keep in touch and I will do the same.
Sending much love
Really good to hear from you @Carrott and know that you're managing OK with the injections. How is work? And fitness? I know you were doing a lot of exercise, so hope you have been able to keep that going and continue to feel the benefits.
Thinking of you @Mel00 and hoping your results appointment wasn't too stressful and that you're all right.
Glad you're done with surgery for now @Kay0987 and that the other tests you've been having have been reassuring, especially checks for thyroid and pre-diabetes.
So glad you've finished your RT, @Katone and are coping well. Hopefully the fatigue and soreness won't hang around too long. Understand what you mean about approaching HT. I feel the same, recognising that this is a frontline treatment for our type of cancer, but feeling apprehensive about side effects. We'll have to keep one another updated.
My planning appointment for RT was very straightforward today. I start on Easter Monday! I was a bit disappointed that another Festival will be interrupted as I was looking forward to making up for a less than ideal Christmas. Still, it will be good to get going (and get past it) and I'm still going to treat myself to an Easter egg! Deluxe one, I think. Bone density scan next week pre-HT. I'm back in scan-land!
We are all making headway on our respective paths. I know we were told when we started out and when everything was so horrible that things would get better. It was so hard to believe it at the time, and yet here we all are, getting along and making good progress.
Hi Carrot! Hope you're doing well?? But thanks for asking about me and I'm good I think. Back to normal and experiencing slight aches and pains that feel menopausal in nature so nothing worth complaining about. Reconstruction seems to be healing nicely, the new girls have a pretty good shape in a bra or swimsuit so I doubt I'll do anything else beyond a nipple tattoo. I'm done with this whole surgery business for awhile I think. Just want to move on with life. Got my annual blood work done yesterday for my upcoming physical. Felt good to do something that had nothing to do with cancer although I had much less tests since my oncologist keeps track of so much herself. At any rate, cholesterol is pretty good and much less than it was at my last physical almost two years ago. Thyroid is holding on and one number is slightly lower than it should be but it's probably surgery related. And finally it does not appear I am pre-diabetic which I was wondering about. Still think I'm glucose intolerant but it hasn't affected my A1C yet so whatever I guess. Anyway nice to see. My doctor should be pleased as I am so onwards and upwards with me, too 🙂
So nice to hear everyone’s updates. @Katone pleased to hear your radio is finished. I honestly think you will be fine with endocrine therapy. I have now had 2 zoladex injections and so far no side effects (touch wood).
@Dunnock great to hear you don’t need chemo and have a short radio treatment. Onwards and upwards 🙂
Hope you got on OK yesterday. Just remember whether the results were as you were expecting or not - we are all here for you. At least the wait is over now and you can move forward.
@Kay0987 How are you getting on now? Has your reconstruction healed well?
Sending everyone much love!
Great news that you're healing well. Did you find your anxiety eased after the surgery? Hope so. Mine certainly did, which was a relief after months with a pounding heart, though it ratcheted up as results time came around - so completely empathise with you. Fingers crossed for a successful report.
Re radiotherapy, I'm having 5 sessions. It's the same amount but delivered over a shorter period. I'm happy with that as I will have to travel to a hospital in a different area and don't fancy 15 days of that particular round trip. I don't why different NHS trusts do it differently. Another of those mysteries of BC-Land!
Let us know how you get on on Thursday, won't you? Will be thinking of you.
Good wishes to all as we continue on our various treatment paths.
@Dunnock So pleased you have a plan on going forward! Fantastic that you’re back at work and have some normality! Good luck with RT ❤️
@Katone Im healing really well! I have my results on Thursday and starting to feel a little anxious 🤞🏻
That seems so many sessions of RT! Is that the same for everyone? I don’t know why I was only expecting a handful of sessions! In regards to the zoladex and letrozole I was put on them as my first treatment, I honestly didn’t have side affects that was to horrendous. My worst thing was the hot flushes and night sweats that gradually got worse once I had my hysterectomy. They did the job as it had shrunk my tumour really well within the first couple of months! My last zoladex was nearly 4 weeks ago but will remain on letrozole.
Good luck to you both and take care xx
@Mel00, hope you’re healing well as the weeks pass. I imagine you’ll be getting results soon, good luck, and we’re all here and will be thinking of you ❤️
@Dunnock, good to hear things are moving forward and you now know the next steps - makes such a difference knowing the plan. I hope RT goes well ❤️
I have just finished my 15 sessions of RT. All very smooth, soreness and fatigue setting in now but nothing I can’t cope with. Having zoladex injection tomorrow and then will also start letrazole. It’s odd, finishing RT felt like a sort of finish line, but of course all the lovely side effects of endocrine therapy yet to come. But grateful to have this option, and my oncologist was very stern in telling me how important it is for ER+ cancer. That made me promise to myself that I will stick it out!
Good to hear from you. How are things going? I hope you are continuing to recover well following your surgery.
Things are all OK here. I made a good recovery from the mastectomy- now 2 months ago! - and got back to full fitness quite quickly. I have been back at work for 5 weeks and all is going well.
Bit of a delay with the results of my Oncotype test, more like 5 weeks than 2-3 so a few anxious days waiting to hear. I finally heard last Thursday. I got a low score so won't need to have chemotherapy. On to radiotherapy and have the planning appointment next week. I'll also be starting on Anastrozole. I have some concerns about side effects from that. The oncologist I spoke to was the first medical person I've encountered who's been upfront about the impact of HT. But needs must, so will have to see.
Well, that's me. Hope you and everyone else is doing well. It would be great to hear from anyone who feels like updating.
Just checking in to see if everyone is doing okay? Xx
Thank you @Katone ❤️
I’m doing really well, I still have my drain in but am not in any pain! Hopefully the drain can be removed next week 🤞🏻
I have been suffering quite bad with constant hot sweats at night but was told it’s quite common when your body goes into shock from having a hysterectomy. Hope your all okay xx
Been thinking of you @Mel00 , I hope you are recovering well ❤️
Im home! Got my drain and they have given me some injections to do every night for 28 days to stop my blood for clotting. Absolutely exhausted so really hoping i sleep through! I’m buzzing that at last it’s out! I have an appointment with gynaecologist and breast surgeon in 3 weeks for results! I’m positive it will all be ok so I can start my next treatment. Hugs sent ❤️
Bless you @Mel00 , you must be exhausted. Quite a ride you’ve had…but now your cancer is OUT!!! Hopefully that brings some comfort, and enjoy being back in your own bed when you get there. Thinking of you xxx
Lovely to hear from you, Mel. Well done on getting through it all. 7 hours is a long time. Deep sigh of relief that it's over. The blood pressure spike must have been alarming, but glad they were able to manage it.
Hopefully, you will be able to go home soon, if not already.
I stayed in hospital overnight after my surgery and didn't sleep at all. I then had the best night's sleep I'd had in a long time once back in my own bed. May you enjoy the same!
Thank you all so much! It took a lot longer than they expected! 7 hours I was under for, I couldn’t go on a ward as I was high risk so stayed in recovery. I went to recovery at 7pm and have just been able to go to a ward. Have really been well looked after and both surgeries went well. I was poorly as my blood pressure went up to 223/223! I didn’t know it could possibly go so high! And I had to have 48% oxygen. But I have literally not slept! So am asking them if I can go home! 🤞🏻🤞🏻🤞🏻
hope you are all well ❤️
So glad the day is here @Mel00 , and you can start to move forward 👏 Be kind and gentle to yourself afterwards, and take it one day at a time - and remember everyone heals at different rates so no need to compare and feel bad if it takes you longer. I hope you have lots of support, and we are here for you ❤️
Hope everyone else doing ok xxx
Great news! Best of luck Mel and please do let us know how you get on.
Wishing you a very speedy recovery
lots of love
Good luck Mel100, I’m sure you will feel so much better mentally when the operation is done and dusted ✔️x
Wishing you well with your surgery, Mel. You've got a full programme there. Make sure to take things nice and gently after. When you're ready, let us know how you are. Xx
Hey everyone, hope all is well with you all ❤️ I’m going into hospital tomorrow morning for my lumpectomy,full node clearance and hysterectomy! Nervous but so glad to have my surgery day finally here! Xx
Of course I don't mind you asking. It was grade 2.
Hope the rt is progressing OK and the gel is doing its work. Each session is one day nearer to finishing. You're getting there.
So pleased for you Dunnock , such a relief for you . What grade was your cancer if you don’t mind me asking ? Hopefully a low grade and you can dodge chemo .
Day 3 of radiotherapy today and boob did go quite pink day 1. They have given me some gel which I keep slapping on 🤞🏼. Hoping it holds out, and know it’s got to be done . Not got much energy but my radiotherapy centre is an hour away . Have also started letrozole, so unsure if it is this or the RT . I’m not pushing myself at the moment and will see how I feel after RT has finished
Take care of you , and make the most of your hospital break ! They never sent my tissue off for sampling as it was a grade 1 x
Great news @Dunnock ! So pleased for you. Xx
Thank you for your messages and good wishes.
I had a long wait to be seen yesterday morning - over 2 hours - and, after a restless night as well, I was too exhausted to come on the forum with the latest. The news was good. The results confirmed that all is clear and that I am now cancer free. I'm amazed I was node negative - tumour was 6.5cm! Feel like I've dodged a bullet. The mastectomy wound is healing well. They are requesting an oncotype test, so until that is done and the results back (2-3 weeks), I am free of appointments! I will be having radiotherapy (5 doses) and will take Anastrozole. Going to make the most of this interlude. Except I'm back at work now, so it's not exactly free time.
How did your first rt treatment go, @horselover?
@Carrott Hope you're doing OK ahead of the first injection. Fingers crossed for no side effects.
The river walk sounds lovely, Mel.
Good wishes to all.
I’m thinking of you all today! @Dunnock I hope for the best with your results! A beautiful day here in Hertfordshire! Took the dogs up the river this morning, cold but so peaceful. Xx
just checking posts 😘
Dunnock , good luck with your results today , it is so blooming stressful, but we need to know to move forward.
i start my radiotherapy this afternoon so I’m abit apprehensive too , but certainly not as stressed as waiting for results was . Hoping my boob will hold up as it is still sore at times following surgery 5 weeks ago .
Good luck to anyone else waiting for results , the sun is out and I’m going for a walk in the fresh air
Take good care of you x
Glad things are moving forward for everyone - wishing strength and good outcomes 🍀❤️
I’m now past the surgery/results stage, and awaiting next treatment (radiotherapy and endocrine). As you so perfectly describe, the waiting is so hard - and you look for potential outcomes based on their words and things that you read online 🤔. But soon you will know, and although it takes a little time to sink in, knowledge is strength, and once you are on to the next steps you will feel a little more in control.
Remember you are in the hands of well trained experts - that helps as you go on your journey xx
Glad it's not just me!
Now you have that date, it gives you something to hold on to. Hopefully it won't change. Mine was actually brought forward by 5 days. It threw me when I first heard but then I was pleased. The time between your surgery and now will feel strange at times. I found I both wanted and didn't want the day to come. It was if the world was 'on hold'. But as with everything else, it did come, we manage it all and we keep moving forward.
Yes, I've had the chemo/ no chemo back-and-forthing. They were going to start me on it originally, pre-surgery, then didn't, and it's been 'all options are on the table' since then. At my post-operative checkup they'd seen the results, but needed to meet as a team before deciding what next. The doctor said the what next was 'a formality' but what does that even mean? As usual, something completely different for them compared to us! I wish these seemingly casual remarks weren't made. I latch on to them and end up brooding and second-guessing, which I don't find helpful but can't seem to help. I guess I'll soon know. Trepidation time! Feeling anxious today so am going to stir myself from my current worry-induced inertia and go for a walk. It's a beautiful afternoon here.
Hope everyone else is doing well and that we can keep sharing highs, lows and in-betweens with each other.
@Dunnock I completely agree! The waiting and uncertainty of dates times or treatments! I usually love to be organised so this has thrown me! For instance! I was told that I’m having my operation then 3 weeks later my hysterectomy! Wednesday I was told they are doing it all at the same time.. until the 21st February is here I’m prepared that it could all change again!
I’ll be thinking of you and everything crossed for your results on Monday!
have they give you any idea of what to expect from treatment going forward?
I was told definitely chemo and then last week he said maybe chemo 🤷♀️
it definitely is a whirlwind of emotions! I’m mostly fine and then the anxiety hits me! Xxx
@Mel so pleased that things are moving forward for you. Good luck with the surgery. As others have said, it's a significant step onwards.
I'm back for my surgery results on Monday morning. It's just as well I checked yesterday afternoon if I had a date yet because no one had thought to inform me!
My anxiety has gone up as I wait to find out what the next steps of treatment will be. So far it's nothing like as bad as it was pre-surgery. So far...
Annoyingly, I just arranged with my employer to return to work on Monday and now it's all going to be unsettled again. Does anyone else find the disruption caused by not knowing what will be happening when, or how we'll be feeling, another unwelcome "side effect" of all this? Not the worst of course, but definitely an ongoing niggle.
Good wishes to all.
@Carrott Thankyou 😊
the hysterectomy is because I’d had a pet scan to see how many lymph node’s was affected through my breast cancer, it had picked up a large mass on my ovary. I had an MRI and an internal scan but they can’t tell if it’s cancer or not only that it looks suspicious. As I already have breast cancer they said the safest thing to do is give me a hysterectomy and then they can see for sure if it’s cancer. Im 45 and been forced into menopause with zoladex and letrozole anyway xxx
I am delighted to hear this @Mel00. You don’t have long to wait at all and in the meantime your tumour has shrunk a little which is great news! So pleased you have a plan at last.
What’s the hysterectomy for, if you don’t mind me asking? Is it linked to the BC in anyway or something completely separate?
Sending lots of love
Hey! So I had my appointment and wanted to skip home! Am relieved to say I have some sort of plan!
I am booked in to have tumour removed and full node clearance on the 21st February! Then 3 weeks later I’m having my hysterectomy!
I can’t explain how much better I feel knowing it’s all going to be removed!
While I was there they realised I had not had my scan to see if the medication I’m taking is working, so had one while I was there and the tumour has shrunk slightly 😊 they did take a biopsy from my right lymph node as the scan showed a slight enlargement but they don’t seem worried 🤞🏻, Thank you all for keeping me sane xx
What a nightmare for you, Mel. I'm sorry to hear you are having all this to deal with on top of everything else. The responses to your post show how shocked and indignant everyone is on your behalf. It's encouraging that you now have a nurse taking action to get things sorted (and knock some heads together). I really hope you are given a clear way forward at the earliest opportunity.
@Carrott Thank you for asking how we are getting on. I'm continuing to recover well from the surgery and am feeling good. I'm trying to make the most of the time before I begin the next stage of treatment. Can't help thinking it's a shame that just when we're feeling fine again, we have to have more things done to us that spoil it all! I don't know yet what the treatment will be. I went for my post-operative check-up on Monday and was told then the report from the surgery had come through and that I'd be called back next week once the Team have met to discuss it. Meanwhile, I'm arranging to go back to work. It's good to hear you are feeling better physically and that you are able to enjoy a sense of normality. It sounds as if, metabolism aside, you're not getting side effects from the Tamoxifen. Good luck for the injection next week.
@Kay0987 Great that you are also doing well. Fingers crossed that the last drain is removed soon.
Best wishes to all.
Fighting for proper care is not being a pain, Mel. You are entitled to it and it's a shame you are having to remind them of that. But do it anyway. No one will care for your wellbeing as much as you.
@Mel00 - I just need to say that in no way whatsoever are you being a pain!!!!! It’s really sad that you even think that!!!!!
It seems they recognise that it’s not going smoothly and therefore you have been absolutely right to push.
Good luck, and I hope things move in the right direction - together xx
Thank you all, my gynaecologist nurse emailed me early this morning and said she has sent a email of emergency to all staff that are involved in my care. She has promised me that she will get to the bottom of why there has been delays with communication. My best outcome would be for them to both do the operation at the same time like my gynaecologist suggested! If I have them separately it means 7 weeks recovery between surgery chemo and surgery again! I’m going to write down my concerns to see if Thursday I can get some straight answers. One minute I get upset that I’m bothering them and being a pain and then I’m thinking I have to do all I can to stay well for my children so if it means constantly being on their back then so be it! I’ll keep you all informed! Thank you again xx
so sorry you find yourself in the situation, it is not good enough!
phone PALS at your hospital and get someone to Look into this for you
best wishes x
What an absolute nightmare! Of course you are fed up. Try and stay strong - at least one thing is being dealt with swiftly.
I’m not sure if you’re aware of PALS (https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/), this is exactly the type of thing they can support you with.
It may also be worth calling breastcancernow/macmilian - they may have some advice on the hospital management process, I’m guessing split care happens from time to time.
If the problem is your breast hospital, I can’t help wondering if your breast care could be transferred to UCL. Might not be possible normally, but given the issues you’ve experienced maybe they could be pushed into looking into this - IF it would make things easier for you. PALS may also be able to advise.
All the best Mel, thinking of you lots xxx
Hi Mel! I just want to say that what you're describing hands down sucks. It's also ridiculous. I don't know what the protocol is for letting the NIH know when treatment you are getting is not optimal but I would think what you are experiencing deserves some attention. So glad to hear you're on hormone medication and have your hysterectomy scheduled but your breast needs surgery, too. I can't imagine your frustration level and right now that kind of treatment is the last thing you need. I don't have anything else to say beyond hang in there and maybe see if you can contact the head of your hospital?
@it’s been a bit of a nightmare to be honest! So I had a call from the gynaecologist this afternoon and he has put me on a priority emergency list for my hysterectomy ( 3 weeks the latest) but he informed me that he has sent numerous emails to my breast surgeon telling him the breast op should of been done before the hysterectomy or had it both done together, he has heard nothing back! He said I need to speak to the breast team and ask why they are postponing treatment.
i managed to speak to the breast surgeon as I have tried many times but actually have not had any communication since the 22nd December when I was put on zoladex and letrozole! He said his been sending emails asking the gynaecologist if he should treat the breast first as he has no idea how serious the ovary is!
I’m really fed up, I feel so in the middle. I don’t think mentally I can take much more of having no contact between them and not knowing which way to turn. Feeling sorry for myself a little! Xxx
Thanks so much for asking, Carrott! All the drains are out but one. Really want that one out, too, but it's still pretty active so this is the way it must be for now. But healing otherwise is going great. My waist I think is going to look awesome and my new girls aren't too bad either I must say. All in all it's not been bad.
And it's great to hear how good you feel, too. I love exercising now and can't wait to get back to it. I find it empowering. I consider it another treatment for myself and statistically speaking it really is. It's amazing how different the numbers for recurrence are when exercise is added to the mix.
@Katone How are you doing? Have you started radiation? Hope all is going well. Please update us with your news.
@Kay0987 are you recovering ok since surgery? Do you still have the drains in? Hope you’re doing well x
@Dunnock how’s your recovery going?
I would love to hear everyone’s news.
I feel physically more recovered now and almost back to pre-bc. I have been exercising so much and eating ultra healthy.
Still don’t seem to be able to shift the weight gain I made after surgery (about 4kg I need to lose). It seems a million times more difficult to lose weight these days. I think tamoxifen has really lowered my metabolism.
However all this exercise and eating healthy has improved my moods dramatically so at least there is some benefit.
I go for my first goseralin injection next week. I have my fingers crossed that I don’t suffer with many side effects.
Other than that, it feels like everything is slowly getting back to normal. I still have the other breast to sort and also ovaries to remove (both preventative). I am hoping to get some dates when I see the consultant next week.
Speak soon and sending lots of love
Just wondering how you are doing? Did you get anywhere with an appointment for surgery?
Sending you lots of love
Thank you @Katone @and @Kay0987
your both so right, I think the fear off it spreading affected me more when they found the mass on the ovaries, but they did say it’s quite common when it’s a hormonal cancer to get it there as well.
UCL is such a great hospital like you say and I do have faith in them, it’s just my mind plays tricks on me! Chatting to you gives me so much comfort, I’m a single mum and have always been the strong positive one so feeling a bit vulnerable x
thankyou for being here xx
Hi @Mel00 ,
I’m very sorry to hear of your woes.
Waiting for treatment is just awful, and it seems a common theme on this forum.
When I read your first post, what stood out was that you’re on hormone treatment already - as said below, this is a key part of your treatment, often even more important than chemo, so I hope you can find some comfort in that.
Having to deal with treatment split between two hospitals is an extra that not all of us have to deal with and that must add a lot of extra stress. As you probably know, UCL is an excellent hospital, so again I hope you take some comfort in that. If you feel there are delays or even if you just need to voice your concerns over inter-hospital management of your care, you could always contact the respective secretaries. Particularly where cancer is involved and as you are young, they are usually caring and helpful. My mum was a medical secretary (oncology) and often went out of her way when someone was clearly upset.
They have found your cancer, started your treatment, and are doing relevant investigations to be fully informed of what is best for you. It’s doesn’t feel like that when sat at home waiting for next steps, but your journey has started.
Thinking of you, sending ❤️, and you can see that we are all here for you!
Mel, look at it this way. Yes being out of the nodes is positive. But so is having a lower grade or a smaller tumor, or a hormone positive one, etc. In other words it's not the end be all of positive things any longer. Treatment has become a great equilizer.
thank you @Carrott 😊 you have put my mind to rest! Mine is all hormonal related, just worry as I know it’s in the lymph nodes. I was on a fb group which was lovely in some ways but people would be saying” thank god it’s not in my nodes” and it was making me so anxious I’ve come off any social media! My nurse and surgeon keep reassuring me that I’m being treated but I just think of treatment as chemo and operation!! Ridiculous I know, just hoping I hear about the ovaries this week xxx