Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Sorry, just to add I’ve never been conscious when having sedation but I did wake up twice on Monday when the surgeon was hammering my new knee in. It was fine, not scary etc because my epidural was in place and I fell asleep again almost as soon as I woke up.

This thread is so uplifting in many ways. I'm grumpy and fed up of the ongoing complications of my lumpectomy back in September - no cancer (fingers crossed) but the ongoing wound healing which my body seems to be fighting as much as possible.

I then read about so many people who have massive challenges on their hands, but are finding the time to help and support others along the way. And those of you who are in nightmare situations which make mine look trivial (I know that we all count).

I don't have the words or experience to really help, but just wanted to say how my thoughts and admiration are with everyone on this bumpy road. And absolutely gratitude to those helping others - as Top says - paying it forward.

Welcome new people, I’m an occasional poster but daily lurker. A lot here are very knowledgeable, all are lovely & no one wants to be here but, here we are. I’m so glad this group exists as it’s a huge comfort for me & makes me feel less alone. @thereisonlyoneofme please keep posting here as I look out for your updates and am so frustrated on your behalf. Is there any option of private care to access an Oncologist or GP ? Have you found a Home for your Dog ? You are both in my thoughts.

Greetings @Worried11111 and welcome to the thread nobody wants to join. I’ve got my op on Tuesday as well, if it actually happens! This is the third time and date they have given me. Are you well? I find it so weird having extensive cancer treatment when I really never had any symptoms apart from a tiny lump. I’ve had breast cancer twice in two years. This is my second lumpectomy and hopefully will be easier as they are only taking a marker and a sentinel node out. Ask away if you have any questions as there is bound to be somebody here who has experience and can help you.

@thereisonlyoneofme could you email your surgery to explain your predicament? I should have thought a referral to Hospice care would be appropriate so they can put in place some support for you looking forward. Have you got Attendance allowance? There is a fast stream when your prognosis is poor with a form called a DS1500 from your GP that gets you benefits straight away to help pay for care. Also Marie Curie might be able to help you. You need people to advocate for you! Sending love and strength xx

@bringonyourwreckingball Welcome xx I’ve got TNBC too. There is an excellent Facebook Group run by a lady called Michelle who has written a book on TNBC. It explains everything you need to know.

I had a mad thought last night. I had a triple positive BC on the right side and now have a triple negative BC on the left. Connect wires to my nipples and I am basically a human battery! Perhaps I can keep the electricity bills down.

Love to all, lurkers and worriers too
Top x

*@TopOfTheCliff
Managed to talk to Macmillan nurses at hospital they toild me to go in to A&E and get my steroid prescription upped as thought it wasnt high enough. Arranged friend to take me over and emergency kennl for dog then Oncologist phoned and said hed send GP a revised scrip.Impossible to speak to GP surgeryAnyway hes seen my scans and not optimistic and gave me a real diagnosis, I cant believe it really. We dont have Marie Curie, I do getattendance allowance, trouble is everyones sick, not there, shortage of staff or onstrike ! Should have done what I wanted to and gone to DIgnitas !

Hello, could I join? I was too terrified to read things about cancer previously but feeling a bit more able to cope lately.

I am 34, married and have two children aged 7 and 15. I was diagnosed with grade 3 triple positive breast cancer in October 2021. I don't have a stage yet - I know it is also in my lymph nodes from biopsy but they didn't show on a CT scan. I had hoped the CT scan would give me answers regarding extent of spread in the armpit but that wasn't the case. Doctor says that would tend to indicate less spread rather than more but i won't know until after surgery. The plan is the usual chemo, herceptin for a year, surgery, radio and then 10 years of tablets.

I'm on round 3 of 6 chemo/immuno infusions at the moment and quite hard hit by side effects. My doctor wanted to change the regime as I was hospitalised with neutropenic sepsis after my first session and very unwell but agreed to reduce the dose of chemo drugs and so far it hasn't happened again. After round 2 the doctor couldn't feel the lump so I'm pleased about that.

Dealing with the chemo takes so much of my energy and focus that it's easy to forget about the cancer. I also have a patch of early cancer/microcalcification in the same breast so i suspect I will be having a mastectomy. I am starting to worry about the future again. What if the cancer comes back, what if the CT scan was wrong and it's lurking elsewhere, what if the scar hurts forever, will I look deformed, should I have a reconstruction, what if I get osteoporosis or some other kind of cancer or illness caused by all the treatment even if I survive now and it doesn't come back? It's overwhelming.

Everybody else seems to be coping better than me but every time I get information or something to cling onto, it's ripped away and I feel like the rug's been pulled out from under me. I don't know what stage I am or what surgery I will have. I don't know whether i should try to find some kind of breast cancer support group or I'll just be terrified by it all again.

Hello @TopOfTheCliff
Hope you get your op Tue
Consultant is calling me tomorrow to discuss
I've got to get my fillings done tomorrow too incase I need chemo
Fun fun fun

A warm welcome to all the new joiners, from someone very new to the thread myself. I’ve already found it to be uplifting and helpful so hopefully you will all benefit from the wisdom, experience and kindness on offer here.
I had my first radiotherapy session today. No problems. All done quickly and efficiently. But… I now have backache. Can’t work out if it is a response to the RT, or just a bit of stress/ tension due to being in the same position in a cold room for 20-30 minutes.
Thinking of you all this evening as I sit in front of the fire trying to relax watching Kirstie and Phil.

Welcome @Plingston to the thread nobody wants to be on. The first rule is Don’t Google! The second is don’t borrow tomorrow’s sorrow. I can’t remember who said that but it is hugely important. You have enough on your plate right now. The future is unknown but you will deal with it when you get there. I guess you were diagnosed in October 22 not 21. My first tumour in 2020 was like yours, triple positive BC with a lymph node, and I got a complete response to chemotherapy. They don’t do as much staging these days as new treatments have made that approach a bit redundant. All you have to do right now is get through chemotherapy in a fit state for surgery. Eat whatever you feel like and drink lots of water. They will tell you what operation they recommend after your end of treatment scans. I’ve got a bit of calcification next to my second tumour too so they are going to try to get both out at a lumpectomy next week but I know I may need further surgery if they don’t succeed. Again if the nodes they sample are affected they might want to take a few more. Last time I lost 30 from my axilla. This time I don’t think there are any affected but time will tell. Although it’s all very terrifying this is bread and butter stuff to oncologists and they will expect to cure you. That’s why the treatment is so harsh! But there are plenty of us on here who have got through it and recovered. You will be okay! Rant away to us we get it!

Well done @Toughie would a hot water bottle help? How many sessions are you having?

Top x

Hi again, just wondering if someone can explain things please, or at least make them clearer. An oncologist rang today(I’ve never seen one, went straight to radiology via chest clinic. Anyway after enquiring about radiotherapy side effects, which he then dismissed, he went on to say that the chest clinic would give me an appointment in three months or maybe six months, but it would be one or the other and that radiotherapy continues to work for six months after treatment and they’d let me know what is happening after my next appointment, in three or six months. It was all terribly vague and airy fairy! Anyone know how the system works please?

I just got signed off at my 3 month appointment after radiotherapy, just checked how I was and said could call them for 5 years. I am 5 months post radio and can't say I noticed any effects, maybe a bit of nausea during it and a bit of tiredness after it and a bit of numb arm but nothing much.

I think I might be starting hot flushes. I said to dh every time we stay at Holiday Inn to see DS someone there turns the heating up to unbearable in the middle of the night and I added someone also does this at home every night. Then it dawned on me it might be me. 😂Brain isn't the same post chemo.

Thank you @Silkierabbit . The only bit I do remember from before is that I will be checked every six months for five years after I receive an all clear!

@Plingston Tops is right - the key to dealing with this all is to take it one day at a time. Some of those questions are worries for another day (if at all) and are dependent on so many microprocesses and results that you can drive yourself nuts trying to account for every potential outcome. All you need to do today and in the next few months is focus on this part of treatment. Worry about surgical concerns at that time. Same with radiotherapy. There is so much information thrown at you when you enter Cancerland that its impossible to make much sense of it in the first few months. Do yourself a favour and dont force extra anxiety and stress on yourself about what ifs and making decisions. Do chemo, then decide.

@Gilead I've found the communication post treatment a bit rubbish. I knew Radiotherapy worked for three months post treatment but hadn't appreciated it was six months.

I thought you generally had a scan three months post treatment. It might be worth giving the cancer nurses a call,

Hi @Gilead as I understand it there are two types of oncologist. Some are dual qualified. There are the ones that prescribe chemotherapy and the ones that prescribe radiotherapy. The MDT must have decided you needed radiation after you went to chest clinic and the oncologist has been supervising that behind the scenes. You don’t see them in the department, just radiotherapy technicians and occasionally a nurse. It’s frustrating they are so vague. Have you got a CNS? Or a named consultant whose secretary you can pester? It’s easy to feel abandoned after treatment finishes.

@Worried11111 good luck today with your dental treatment and the consultant. Have you made a list of questions to ask? It’s easy to forget in the heat of the moment.

Top x

@TopOfTheCliff
I'm not sure what to ask right now

@Worried11111 I find the consultant usually has an agenda which seems to be telling me what they think I should do, explaining all the pros and cons, getting my consent after warning me of all the side effects and complications, and giving me leaflets that reiterate what they said because I will have forgotten all of it when I get home/ ring off. The most useful bit is to find out what happens next and when and who to contact if I haven’t heard anything eg you will be invited in to discuss chemotherapy and to have a PICC line fitted, or you will have a pre-op anaesthetic assessment and an appointment with a nurse to go through what to expect after surgery. Most stuff like “where will the scar be?” or “ how soon can I eat and drink afterwards?” you find out as you go along so you don’t really need to know it in advance, it’s just nice for anxiety management.
Thinking of you
Top x

@TopOfTheCliff
Thanks so much

@thereisonlyoneofme i am so very sorry to hear you news. I don’t know what to say, I’m so upset for you.

Welcome newbies. Sorry you’re here.

I’m 3 weeks in to Anastrozole now. All good so far. Hair is back good and thick but obviously like a boy as it’s short. CA-125 still over 600 for no obvious reasons. Oncology today questioned whether this might be my baseline now….who knows. So much anxiety.

First chemo tomorrow at 1145. Picc line went in today. The tubigrip is rubbish I will have to order something better. I’m having a Baileys hot chocolate trying to wind down. I’m terrified though my chest feels heavy. Now I’m worried I can’t get showered in morning with this line in on my own. It’s not like my brother can help me😂😂

Hi 👋🏼I would really love some advice about what will happen if I ring the GP. I am currently crying writing this post as I just feel utter anxiety. I am early 20's with a 1 year old. Ever since I was pregnant I have had 2 smooth round lumps in my breast. My nipple is also dry and sometimes cracked. I also have a white spot on the end of the nipple which when I google looks like what they describe as a 'milk bleb'. I have been ignoring the issues as I just would rather not know. Both breasts often ache. I don't know what I want to achieve by posting but I would like it off my chest.

@TopOfTheCliff and @JlL2013 thank you both. I think the answer is to ring the specialist nurse. I’m autistic so tend to find ‘in the moment’ processing difficult. I do though feel abandoned, I’ve had the radiotherapy and that’s it, no discussion on the future, nothing about where I am now. It’s an odd feeling that I’m having trouble with. I don’t know if I’m cured, on the way to being cured, do I even have cancer?
Sorry, rambling now.

@chocolatesauceandicecream hi there - I am older than you (37) but I have a 9 month old and went to the GP about my lump when she was 4 months old. The lump was a milk cyst in the end, as the GP expected it to be - but she sent me for an ultrasound out of an abundance of caution and thank god she did because I did have cancer and the milk cyst was hiding it.

You must go and get yourself checked. If not for you, for your child. The vast majority of breast lumps are benign but obviously some are not and the quicker they see you the quicker they can get on and fix it. I have had two surgeries, and 5 rounds of chemo out of the 8 I’m scheduled to have, I can promise you - and others will likely be along soon and say the same thing - NOTHING, none of it, although it has been shit, has been as bad as that anxiety beforehand and the wait for the results. Nothing. Once you know, you can and will deal with it. You got through pregnancy and childbirth and a newborn, you can absolutely handle this - please please give your GP a call.

They are going to cure mine and I WILL see my daughter grow up but had I not gone and got it checked that might not have been the case, as it had already spread into two of my lymph nodes. This thread is very supportive and there are some wonderful women on here who have given me great advice and support, you can always post here if you feel overwhelmed or have questions.