Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Happy Saturday everyone!

freddie thank you. Chemo went quite smoothly, especially considering we had to be relocated due to a ceiling collapse it's the second time it has happened so the staff were amazingly efficient. I hope you are enjoying the school holidays!

pepper I'm glad your surgeon appointment was alright nerves can sneak up at surprising moments, so it's good he was able to put your mind at rest a bit. Congratulations on the discovery of your third nipple! how exciting. A lady at yoga class once asked if I had a third nipple, but it was just the little lumpy scar from my surgical drain showing through my t shirt. She was a bit disappointed.

Littlegrey am I remembering correctly that you're a teacher? Hopefully your surgery will fit in with school holidays if so. How have you been finding it after maternity leave? I hope it is not too much of a shock to the system. Fingers firmly crossed for 10th sorry it has taken you so long to get to this point!

Waving to all. I hope you all have a relaxing weekend. Thinking especially of chewing at the moment.

I have also realised that it has already been just over a year since Lilymaid died. She was such an active presence on the thread and it's not the same without her. Of course it has continued to evolve and grow, and it's still a wonderful source of support. But I will always be thankful to Lily. She and Sleepy really guided me through the first months of my recurrence with their no nonsense attitude and acknowledgement that basically yes, cancer is shit, especially when it's incurable, and you just get on with as best you can. I'm rambling a lot. But really just wanted to raise a glass (of orange squash!) to Lily and to her family

I have lurked on these threads for a couple of years having had various family members hit by cancer. I am always in awe of the support you give each other. I remember hearing about lilymaid and sleepy and raise my own glass to them. But I also wanted to publicly say thank you to leslie who has been so kind to take time out of her own experience to help me, particularly when my sister was diagnosed with terminal cancer nine months ago. Thankyou Leslie for your incredible depths of compassion, positivity and for probably the finest memory in the world (unless you're a spreadsheet demon ) I wish all of you the very best and much light and love x

Well said myrtleWilson . I second all of that! You're fantastic Leslie for all you bring to this thread. Sending you and all the lovely Lacies strength and positive vibes x

Good afternoon all.
Leslie I can't believe it's been over a year since we lost Lilymaid
I agree with what myrtle said about you and think that you have a very large spreadsheet

As per usual I have had no end of bother. I have identified another chemo regimen that could possibly help and suggested it to my consultant. He said that I can try it if I want but he doubts it would work. He seemed a bit defensive and sent me an article about the regime he put me on compared to the regime I've asked for. I had already seen the article and in any case it was 18 years old so hardly current!
I kept chasing the referral to the other hospital through my nurse with no success and in the end found a secretary's number on Google so phoned them myself. Have been told that an appointment has been made for 3 weeks time. I can't afford to wait that long so have had to make a private appointment for next week with the option of being seen at the consultant's NHS clinic after that.

I am really hacked off at all the chasing I have had to do myself as well as suggesting treatment options

Good to hear from you Chewing. Good luck with the potential regimen. I'll keep everything crossed for you.

on your behalf chewing. That is appalling. I hope the private appointment goes well and that you can get started on the new regime asap

Waving to myrtle and 1234! though I am sorry that you've both had cause to be here and for your respective losses. Thank you for your kind words :)

Twitter how are you feeling? I hope you are not overdoing it

How is everyone today?

I had coffee with a friend this morning and it was wonderful to just feel normal!

Hurray for normal leslie
chewing your treatment has been beyond shocking. Is there no sense of urgency anywhere! I do hope the consultant appointment is positive and proactive

being very good Leslie, honest! No cooking, cleaning, housework, lifting. We did have a long potter yesterday - 2.5 hours in the park watching the barges (waterways festival). I have to admit to being very tired at the end of it but feel pretty good today.

How are doing?

chewing I just can't believe how poor your care has been and how much you've done yourself. I hope you can make some progress with treatments asap.

leslie yes I'm an English teacher. I was only back for a week (because smp was up and I couldn't afford not to!). But really enjoyed being back. No idea when I'll be back again now. Hopefully I'll get back pay time before Christmas then full time around Easter time!

Glad to hear it Twitter. Healing is pretty tiring business

LittleGreyCat I'm glad you enjoyed it. Fingers crossed you'll be back before you know it :)

Hello - I hope it's ok, I've been reading through this thread and I have a few questions I was wondering if anyone has advice on?

I found a lump in my breast a few weeks ago, my GP sent me to the breast clinic, and they did an ultrasound and mammogram and then a core biopsy. The radiographer said it 'wasn't benign' but that he couldn't see anything in my armpits and that the lump is only 2cm across. I think he said quite a few other things but I was trying not to cry so I might have got it a bit confused! He said a few times he was very glad that I had come in when I did and that it is in a 'good place for surgery'. Now I go back next Wednesday for another appointment, the letter says with 'the consultant or one of the breast care team'. Just as other background, I'm 38 and no family history of cancer or anything.

I guess my questions are (in bullet form):

• the radiographer seemed pretty certain that it was 'bad' (I just can't remember exactly what he was saying), what would they be able to tell me next week? Will they know everything then or would there be more tests, and what would those be?

• We're supposed to be going on holiday in three weeks time (kids are 6yr and 4yr so they know about the holiday and are looking forward to it). If I needed treatment, should I cancel the holiday?

• If I do need treatment, when will that happen/how quickly could that happen? I am working full time but I'm just wondering how realistic that is if treatment takes a long time. I work for a v small company so I could ask for statutory sick pay but there wouldn't be anything else.

I've got a tonne of other questions, and I realise the answer to everything is probably 'wait until next week', but I would find it a bit easier if I had an idea of the scenarios that I could be facing, and what the timelines are, if that makes sense?

Thanks in advance for any advice,
Overeggedit (sorry rubbish username, all my good ideas were already taken...)

Hi overeggedit and welcome but I am sorry you have had to join us

Very annoyingly, probably most of the answers to your questions are it depends...

Hopefully they will have your biopsy results so they should be able to say it is definitely cancer or not, and possibly more details about what type of cancer etc. Extra tests would depend on that.

Treatment can happen within days, but usually more like weeks. They are usually happy to work around holidays so I definitely would not cancel it until you have spoken to them.

I suppose possible scenarios vary from only needing surgery, which would require some recovery time but then you could work as normal, to needing surgery, radiotherapy and chemotherapy (chemo is sometimes given before surgery and sometimes after). Radiotherapy would be daily trips to the hospital for around four weeks. The main side effects are fatigue and skin damage. Chemo would be up to six months. Side effects vary quite a bit and are cumulative. Most people need at least some time off each cycle, and probably more for later cycles

Hi overeggedit, I'm sorry you have found yourself here and typically at a most inconvenient time family wise. I was in a very similar position to you three years ago. I had the mammogram, ultrasound and core biopsy but my radiologist was not as frank as yours and I really didn't realise what his wording meant.

Like you he scanned my armpit but didn't seem too concerned about it and he didn't mention the size of the lump he'd found.

At the appointment you're asking about the following week I saw a consultant and breast care nurse. From the biopsy they could confirm it was cancer but at that point not which sort, there are many types. What happens next can vary, they may want to do more tests which could be biopsies or scans to be clearer about the correct course of treatment.

In my case I was booked in for surgery 11 days later which was a removal of the lump and they took some lymph nodes from my armpit to test for spread. They had thought my lump was 17mmbut it was actually only 11mm so don't cling too much to your figure of 20mm. It was done as a day case and I then had about six weeks recovery time before I started a three week courses of radiotherapy. I went on a prebooked holiday a week after this all finished.

Mine was a simple case of the most common type of breast cancer, it was small and it hadn't spread, but they acted immediately. Cancelling your holiday is something you should do after your next appointment because it might not be cancer. But if it is I expect they will want to operate quickly or start further tests. Some people have chemo before surgery, it all depends what they find.

The process for me took from mid May to the end of July. That's about the shortest course of treatment I have heard about on here. But having said that people have worked through chemo and radiotherapy, although it's tough. It all depends on treatment regime, type of job you have, travelling time and everything else your life involves. There are so many variables that it really is a case of wait and see I'm afraid. I didn't need chemo but most here have had it and can offer a view of that.

As for position of the lump mine was left breast, upper outer quadrant and they did a brilliant job. I have a 3 inch scar which is now white and a slight dent by it and another scar in my armpit from the node removal which is a similar length.

I don't know if that was at all useful but keep asking questions, everyone is very happy to share experiences .

Hi overeat, mine was slightly more advanced than mrs . So I had my biopsy and mammo like you and the following week I was told it was cancer. They were able to tell me it was globular and likely 25mm. That was 5th Feb, I went on holiday as planned at the end of Feb and had my op on 1st March. Three weeks after that they were able to tell me it was actually 40mm and had spread to my nodes.
So, if it is cancer, and they think It's early, then go on holiday before treatment, if they suggest it.
Even mine which had escaped to the nodes they said actually 3 months earlier or later would have had the same outcome. Hope that helps

Doh! Def typed overegg! Flipping autocorrect!!! (Sorry!)

Thanks so much everyone, this has really helped!! It just helps me feel like I've got a grip on things, if I have a sense of what might happen next, what the scenarios are. I'm a bit of a slow thinker, so I didn't think of any questions when I was at the hospital, and then of course my husband asks me all these questions afterwards and I don't have a clue....!

Just on that note, for the appointment next week, is there a list of questions I should ask? I want to make sure I come away with all the information I can next time....

Thanks again for this, much appreciated.

Hi overeggedit. Waiting for results and then a treatment plan is the worst bit. I think the important things to know, and what will inform your treatment, is what grade the cells are (scale of 1-3, with 1 being most like normal cells and slower growing, 3 most abnormal and faster growing), whether it's hormone positive and whether it's HER2 positive.

I'm surprised the radiographer has been so certain that your lump is definitely cancer - they report on a BIRADs scale of 1 - 5, with 1 being almost definitely benign and 5 being almost definitely malignant. So even though the comments the radiographer made to you don't sound very positive, do remember that nothing is 100% until confirmed by biopsy.

There's lots of info on the Breast Cancer Care website about the different types of cancer (it can be any combination of HER2 positive or negative, oestrogen positive or negative, progesterone positive or negative). The golden rule of this thread is DON'T GOOGLE!!

You can ask for your pathology report if you want.

If you do have a positive result and it's a tumour that hasn't spread and isn't high risk, I'm sure you'll have plenty of time to take your holiday. Even though mine was high risk (HER2+, multifocal and spread to lymph nodes), it was still over 2 months until I had any treatment. If I'd opted for a simple mastectomy and no reconstruction, that would have happened sooner, and if I'd agreed to chemo before surgery, again that would have started sooner. It was also Christmas hols right in the middle of all of this, so that added another couple of weeks on. My surgeon was very certain that the delay wasn't making a difference, looking back I'm not entirely convinced, but I'll never know!

Is someone going with you when you get the results? I went with a friend, so glad I did, as I wasn't really taking anything in apart from 'it's cancer' when I got my results.

Wishing you all the best.

Wave to everyone else.

Overegg, if it is bad news next week there should be a dr and breast care nurse at the appointment and the nurse tends to stay on to talk to you and make sure you have understood what has been said. You'll get written info and the phone number of the nurse to call anytime. The nurses are specialists and your contact point with the hospital, available for help and advice anytime you need them. It would seem from what people have said here that some are better than others but mine have been great. Take someone with you and let them take notes and ask questions that you may forget. People differ hugely in how much detail they want so make sure whoever you take doesn't start asking things you're not happy to hear. I also recommend Breast Cancer Care, the nurses that answer the phones are wonderful. Sometimes it's helpful to talk to someone anonymously or if it's out of hours and you need help of information.

Argh. Clearly I had lobular cancer NOT globular.

Dear overegg... I was diagnosed mid Feb, op mid March, no need for chemo, five weeks of radiotherapy and now on tamoxifen.
I just want to try to reassure you that even if it is cancer, while it's not exactly fun...it can be physically less draining than flu. I'm emphatically not brave (come near my eyebrows with tweezers and i flinch) but honestly it was fine. I only needed a couple of days off work through the whole process. And I defy most people to spot I'd had an op on my breasts, I was happily sunbathing topless last week. I had the most common sort...er/pr+ her2 neg... it was grade 2, stage 2 (because of size....2.5cm) invasive, ductal.
It is now almost a distant memory...i even forgot the name of my surgeon the other day!! I'm only saying this because cancer always sounds so horribly scary.. ..but for many women it really isn't that horrendous...
Which isn't to negate what some women go through...but I longed to hear reassuring stories when I was first diagnosed....and could find very few.....so I hope this is reassuring to you...this is absolutely the worst time, waiting for results. Have my hand to hold...and I wish you all the best.
Oh and read Ambers words at the beginning of the thread.. ..and no googling.. and only other advice; find a surgeon and hospital you trust implicitly.. .if you're in London I can't recommend the Marsden highly enough..
Hugs to everyone else...
Leslie.. .loved you having a NORMAL time
Chewing....words fail me...shocking...just shocking.. .xxx

Hello, hello.

I got confirmation yesterday that I have breast cancer. Definite mastectomy required and waiting on treatment advice after an MRI of the other breast and a lymph node biopsy this weekend.

I haven't asked what stage my cancer is at - should I? I think it might frighten me but people keep asking me . Shouldn't they just be satisfied that I have cancer which has rendered my right breast unsaveable?

Tony, I'm so sorry you've had a positive result. The thing is, it's perfectly normal to be scared, I defy anyone not to be. For some people, me included, just turning up and having the treatment is as much as they can take. If you don't want to know every detail that's fine, make sure your team know that and they should tailor their contact with you accordingly. I have definitely said to my oncologist I have never asked such and such so please don't tell me. When it's good news it's nice to hear but completely up to you. As for everyone else, it's really impolite to ask I think. I don't remember ever being asked that question, it's
very personal . It's cancer, no more needs to be said so I'd tell them to back off a bit. One day at a time.

Tony
I also was told yesterday that I'm going to need a mastectomy. I've already had surgery but unfortunately it hasn't caught it all.

I'm really struggling with telling people as I feel so intruded on and desperate to cling onto what little privacy I have left. Do any of the more long term posters have time to share their experiences of telling others? How do friendships survive if they try to minimise it, try to make the drama all about them, show a ghoulish interest in details you didn't want to share whilst not delivering any emotional or practical support? Also if you told too many people did it make it harder to go back to business as usual and not feel scrutinised?

I've been bumbling along with all the waiting for results and yet more tests and surgery since early May but yesterday's news has really thrown me. Anyone quoting statistics at me in an attempt to reassure me or mostly make themselves feel better is probably risking life and limb as every bloody time I've had a situation where I had a 9 in ten chance of good news I've had bad so far. It's starting to feel like the film Rosenkrantz and Guildenstern are Dead where they endlessly toss a coin getting heads every time. All laws of probability no longer apply to me.

Sorry to rant so much. I've been holding it in for a few months while pretending it's business as usual and now I feel I've sprinted full pelt into a brick wall. I've been lurking on this thread and finding it supportive and would like to thank everyone for the support you have given me over the past few months.

Lost
I'm sorry you feel so intruded upon. I have been very open about my diagnosis (advanced ovarian cancer) because I am keen to raise awareness about the symptoms. Also, I need my friends' support and I cannot lie to them - they are my friends and they deserve my honesty, even if it is only me saying "I'm sorry, I can't talk about that right now."

They are not true friends if they try to minimise, show a ghoulish interest or intrude. This is your cancer, your experience, your pain.

You might find it easier to appoint one person as your spokespersons, so you can tell this person only what you want other people to know. Then you won't be bombarded with intrusive questions. It could be your DP or a family member - whoever you trust most. Whenever people start asking questions you can simply ask them to contact this spokesperson as it is too wearing for you to keep repeating things.