Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

Hello everyone. Saw the consultant on Tuesday and yes, sadly my lymphoma has returned. He said it's highly unusual for it to reoccur 12 years down the line but it can happen. Since Tuesday I've had a ct scan and a pet scan. Awaiting biopsy now. I have a wonderfully supportive dh and family and friends. Telling our ds was heartbreaking as he took it so badly as he remembers the first time around when he was only 5. Consultant said it's very treatable and i beat it once, I know i can do it again but it doesn't make it any less shocking or hard to digest though.

Ah @Bbq1 thats hard. So sorry for what you are going through. I had two different breast cancers in two years and telling the DC and my DM 89 was the toughest bit at the beginning. My DD1 has fragile mental health and it gave her a breakdown. All better now happily but I felt awful causing such pain to them.

Thank you @TopOfTheCliff. That's really tough having hd 2 different breast cancers in such a short time. Telling family is so hard, my dm is 83 and we are so close. I hoot that you are recovered now and good tu hear that all your family are too.

I'm sorry for your news @Bbq1.

Hello. I have been lurking here since I had a biopsy following my first mammogram on 23/10. My anxiety is really increasing now.

I was told at the mammogram that I may well get a recall as it was my first one and they had no benchmark of normal for me. So I wasn't overly worried, didn't even take DH with me. But when I got there, it was all about a lump.

They did an ultrasound and said it was probably a cyst so they would drain it and then do a mammogram to check it had drained. Nope, still there so did an ultrasound of my armpit lymph nodes, nothing much said. Then I was told I need a biopsy. The radiographer was very kind and said it would just be one sample needed and they probably wouldn't need to put in a titanium marker. Nope, multiple samples were taken and they left a marker. I then had another mammogram where I bled all over the floor from my wound! It was in reality quite traumatic.

They said it should be 2 weeks to get results but it was currently 5 weeks due to backlog. So that is 27/11 at the soonest.

A friend had the same letter and went on Wednesday but hers WAS a cyst which they drained. Job done.

So mine is not a cyst. If it is not cancer, what would it be? I am getting proper scared. My Dad died on 2/10 and I am so sad about him, miss him and he would have been my rock. My mum and DH are great but I just want Dad to ignore anything medical (his tactic) and talk to me about normal stuff.

Sorry this is long and thank you to everyone who is so honest about their journey. Total hats off to you all.

@Fantasmic143 welcome to the thread nobody wants to be on. You area at the hardest point now, waiting for a diagnosis.It is possible you have a fibroadenoma which is a benign solid lump but you need to prepare for worse too. Have you got a Breast Care Nurse yet? They are there to listen and speed up things so it might be worth giving them a ring. 5 weeks is awful! When I was waiting first time round I had ten days of anguish and weeded my whole allotment that week. It helps to keep busy and maybe download a Calm app or similar.. Ask your GP for help if it’s all too much.
I lost my DF in 2021 sadly. It was during lockdown so we weren’t able to see him much in his last days. I miss his wisdom and kindness hugely.
Sending hugs
Top

PS I succumbed to my DHs lurgy so am bedridden and off food now after ten trips to the lavatory last night!

@Fantasmic143 that sounds a very tough experience and poor communication.
please listen to @TopOfTheCliff she knows her stuff. Vent here, stay away from Google, chase the bcnurses.
@TopOfTheCliff so sorry to hear you’ve succumbed. Take it very easy. 🌺

@TopOfTheCliff Thank you so much for replying. I have a stinking cold so can sympathise with feeling crappy!

We need our parents at times like this, don't we? And yes, 5 weeks seems like a long time. My head keeps going round and round with what if it is this and what if it is that. The uncertainty is so hard.

Luckily I have a busy job so will be getting stuck into that properly next week after some time off for Dad. My boss has been amazing about all of it.

Thanks!

@Bbq1 really sorry to hear that sending you lots of love. Do they have a treatment plan for you yet.

@Fantasmic143 so sorry that you are having to wait so long, it really is the hardest part. Sorry for the loss of your Dad.

@Bbq1
Bollocks. Bloody buggery bollocks. That's rotten
Admire your strong approach

My DS2 took my second diagnosis hard but he's getting there

@Fantasea pay attention to the thread title. “Don’t borrow tomorrow’s sorrow”: ( worries) which means the way to survive is to stay in the present. You might spend 5 weeks planning your funeral then find it’s not cancer. The knack is to concentrate on each day as it comes and deal with that challenge. When you get to results day you will cope with whatever they throw at you.

Great advice @TopOfTheCliff
And timely for me
Was getting a bit ahead of myself

I've just seen that MN has created a new "cancer" topic (on app so can't link). I feel kind of mixed about it. On the one hand obviously it's something I can post about and be useful to people, but on the other the word is now jumping out at me from the active convos page and reminding me I had cancer when I'd rather not think about it (also do we move this thread?) so I might hide it. What do other people think? It would have been nice to have know it was going to happen.

My hospital appointment is 11 days away. I went to the doctor last Friday when I found a lump in my breast. She was very concerned measured the lump at 5.3cm with irregular boarders.

I haven't been feeling great for a while but never got around to going to the doctor. I am terrified if I'm honest. I have 2 children sitting exams this year one A level and one GCSE

Can anyone offer advice?

Oh @Blinky06 I'm sorry to hear this

Any breast lump is concerning but most are not sinister

11 days is a long time to wait but won't make a difference to the outcome. If it helps, when I had breast cancer, I was in surgery by day 11 - they move very fast if they think it's malignant

Morning all!

@TopOfTheCliff I too seem to have the lurgy 🙄 I put it down to a hangover yesterday but am still rough today & didn't think I'd drunk that much on Friday evening so we could go out yesterday 🤔

@Fantasmic143 the waiting's bloody horrible. Sorry you find yourself here. You're in good, and wise, company though.

Hope everyone's having an alright weekend!

Welcome @Blinky06 sorry you have to join us. Keep busy if you can.

I have been up half the night with the squits. I even had to change the sheets.
DH still not eating and both very fed up! I was hoping to be feeling better by now.

Hope you are doing better than me!

@lucysmam

I totally agree, it should be with you: not about you without your knowledge or input. It all sounds stressful and invasive, plus it could have been done in a much better way. I'm sorry they did that, I'd have been upset too.

Good idea, request the documents and check them. The way they had symptoms on your records that you don't have is worth checking, but not much surprises me any more, unfortunately. Good you're going to chat with your GP about it.

If it's of any comfort, you are not alone dealing with incorrect info on your records. I recently asked the hospital to correct a document they'd written which was full of multiple mistakes about my diagnosis and treatment. There was actually hardly anything on it that was correct other than my date of birth - they were writing as though I had early stage ER+ cancer instead of locally advanced ER-neg Her2+++. They did correct it (as in completely re-wrote it). Example mistakes: they put 5 instead of 15 days radio, no malignant lymph nodes vs multiple, they constantly talked about endocrine therapy and DEXA scans ongoing for 5-10 years whereas I am not on any endocrine therapy and they aren't giving me DEXA scans etc etc etc There were more mistakes but that gives you an idea.

@Blinky06

11 days is super fast, that's good. I had to wait several weeks for my initial appointment despite already knowing I had cancer. Then another 3 weeks for biopsy. Chemo started at the 2 month point. My first treatment was chemo because I had an extremely aggressive (grade3) locally advanced breast cancer (T3-N3 ie stage 3c). Most people have less aggressive cancers so please don't think you'll be like me, my tumour was over double the size of yours for a start.

The wait before the appointment is terribly stressful, so although 11 days is really fast for the NHS, it is agonising.

My only advice for now is to try to keep busy to distract yourself. But it is awful waiting, I think practically everyone is likely to say that. Good luck x

I vote to keep this thread under General Health

A 'Cancer' section is likely to appeal more to people who know someone with cancer or people who are not (yet) diagnosed I think.

Those of us actually with cancer would often prefer a less in your face way of finding our threads. I would anyway.

Thank you all, you have all been through so much.

@SummerCycling that"s such a long time to wait, I do hope that treatment is going well for you. My GP did give me the impression she thought it was cancer , I didn't ask enough questions at the time. How did you know before your appointment?

@Blinky06

Yes, it was a terribly long wait. Horrendous. I wished like hell every minute of those weeks that I lived in a country with quicker access to treatment like Switzerland, Norway, Denmark, Germany, France, Belgium, Spain, Italy, or various other countries nearby. I phoned PALS in tears who said they'd email the manager of the dept, and contacted my GP who also said they'd email the unit. I got a cancellation in the end, but I'd already waited nearly a month, and then the biopsy was a further 3 weeks. Then weeks till a slot was available to start chemo. It's a complete disgrace for such a wealthy country as the UK and lives are lost because of it.

Thanks, yes, treatment went as well as it could have done regarding response. I suffered greatly though on chemo. Most breast cancer patients don't need chemo, so don't worry about that yet, plus some people on chemo feel fine - I know several. It depends on which breast cancer disease it is (there are several diverse diseases under the umbrella term "breast cancer"), then it also depends on the grade (speed it grows), and the stage (size of mass and lymph node involvement).

I just knew. I felt a lymph node under my arm and knew. 100%. I had the same with another medical condition I'd had before, I knew the cause. I told the consultant that other time but he didn't think it could have been the cause, but it turned out I was right. It is really weird, like a sixth sense or something. Only ever had it twice, about that other condition and this cancer.

Pity my intuition didn't warn me sooner about the cancer, it had already got to almost stage 4, but a mistake was made too by the hospital I'd been at for the previous mammogram who said I was average risk next check in 3 years. 3 years was far, far too long.

Hope I'm not scaring you! You have an appointment much more quickly, which is a good sign that your potential treatment would also start more quickly if it does turn out to be malignant. If it is cancer, it's also highly likely to be far less aggressive than my type, which is a pretty unusual type being hormone negative (zero) but her2 strongly positive. The vast majority are oestrogen positive which is a good thing in the context of breast cancer.

Fingers crossed for you though that it turns out to be a cyst or something else. If not, you've found our thread x

@SummerCycling that is an absolute disgrace, it's shocking that this is happening in the UK. I'm so sorry that chemo was so tough for you, I didn't realize that most women don't have to have it.

Thank you for your detailed post , it's very helpful. Wishing you you all the best , take care xx

@Blinky06

Thanks. Yes, it was shocking: all that talk about the NHS cancer 2 week referrals ( I was on a 2 week referral) but the wait made the name meaningless - or worse really! Best not to call it 2 weeks unless it actually is within 2 weeks. It made me feel let down and panic stricken before I even got there.

Most breast cancer patients are lower grade, lower stage, ER+ (oestrogen positive) and Her2 negative. My physio who specialises in cancer patients said the "vast majority" of breast cancer patients have a lumpectomy, 5 days radiotherapy and are finished with treatment within max 6 weeks. No toxic chemo or immunotherapies needed.

The rest of us (much smaller percentage) need chemo because eg higher grade, more advanced stage, her2 positive, triple negative (TNBC) or whatever etc. It's because there are several different diseases called breast cancer, and they each have different treatments. Another example, Her2 positive patients will also receive monoclonal antibodies, but they wouldn't work for her2 negative patients, just like oestrogen blockers wouldn't help me.

Once you're in the picture regarding your diagnosis, these things will make more sense. BUT fingers crossed you won't have to bother because you in fact have a benign lump x

@Bbq1 I'm so sorry to hear your lymphoma has returned. It's bad enough going through cancer once isn't it. Welcome to our thread, I hope you find it helpful and supportive.