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

Hello, I am new to this, 4 weeks ago I noticed my right breast had changed shape, it had flattened along the bottom and seemed smaller with the tissue under the nipple appearing to have thinned. I'm 39 and my Mum had BC at 49, so I went to my Gp. He could not feel anything but with Mums history and knowing I don't unduly worry about my physical health he referred me to what I thought was a 'one stop' clinic. I had the appointment around 7 days later, the Consultant couldn't feel anything but said she would send me for an Ultrasound within the next two weeks. I was a bit surprised that it wasn't being done that day but she explained I hadn't been fast tracked. I had a Mammo on Thursday last week and could see from the radiographers face that things weren't right. They did a second set on the right breast, magnifying the area and said they were going to see if they could fit me in for an ultrasound. Which they did, I had 2 core biopsys taken, and the tone from the nurses and Consultant Radiologist was all very somber. I am now waiting for results and was told 7 to 10 days, I'm working away the next couple of days and then we have a holiday booked from Wednesday for a week. Are they likely to call me? The Consultant wouldn't say it was BC but that is was something there that shouldnt be there. I'm scared.

*a mammo within 2 weeks

Hello Bringback. Sorry to hear your news, it must be very worrying for you.
Yes, they will call you. They've carried out tests and they've said that they will contact you so yes, you can expect to hear from them. There's no reason why you can't have your holiday though. I assume you're going away somewhere for half term? I doubt very much they would start any treatment (if it is indeed bad news) within just a few days so you simply say that you can't start anything until xx date. A few days won't make any difference.

Hi, yes they said to have my holiday etc, I would prefer to know one way or another before we go on Wednesday. I'm a HCP and am used to pts getting the results on the day, so am not sure how this will play out. Twitter , I've been following your story from day one and you really are an inspiration. Thank you for replying.

Thank you everyone for the support.
I am back in control
Bring I hope you get the results soon. The waiting is horrible

Bring sorry you’ve had to join us, but welcome :) did they say they’d give results over the phone? They usually prefer to do that in person, though different hospitals/departments have their own policies. I hope you have a lovely holiday and manage to put this all out of your mind a bit

wombat I’m glad you’re feeling better. Do you have any appointments this week?

I hope everyone has had a relaxing weekend :)

I have spoken to the Consultants secretary and the biopsys are being discussed at the MDT on Thursday, from there either a BC nurse will call me, a letter for an appointment will be sent out or a letter with results. I am thinking I will ring again Thursday PM or Friday AM - is that reasonable?

Sounds very reasonable indeed to me Bring .

The waiting for results is dreadful ,pure torture .You have all my sympathy .

Wombat so sorry you were having such a tough time the other night .
Grace ( is that the right name ,can't scroll back ,but pregnant lady with disappearing DH) hope you get answers soon .How horrible for you both .

I’m a week behind with the thread as I was away for half term last week.

Leslie, thanks for asking about DS. He’s in fine form ☺ What a rubbish experience with that HCA, and for some of our other lacies encountering the less sensitive types too – I do wonder about some of the people we come across.

TheFarSide – what a miserable time you’re having. I hope you don’t think what I’m going to say is insensitive, but would you consider a referral to your local hospice? The pain team there were the ones who helped DP (who had metastatic renal cancer), we found they were the real pain experts, and a huge support all round, they're not just there for end of life care.

Biscetti – I have a DS, who’s now 9. He was 7 when his dad died and 8 when I was diagnosed (last November). DP refused to accept what was happening to him, and therefore DS wasn’t prepared at all for his decline and death, which I think was much more traumatic than if he’d known what to expect. I waited until after Christmas last year before I told him about my diagnosis, afterwards he asked me how long I’d known and made me promise that in future if anything bad happened that I would tell him straight away. DP didn’t do DS any favours in the long run. I don’t know if that helps at all, you will know your own DC best. I sort of want to congratulate you on your shit but better than they could have been results, if it’s not too insensitive. Also, one of my nurses said that the Royal Marsden and the Christie are the absolute best cancer treatment centres in the UK, and it’s good to hear that you have a lovely consultant.

LittleGreyCat, I am still shocked at the lack of support for children. I couldn’t even access school transport for DS, even though he attends our catchment school, which is more than 1.5 miles away, and I couldn’t drive for 6 weeks. The headteacher had asked for us, but I found out afterwards, via a Macmillan holistic assessment, that I could have requested it via social services. I would really recommend asking Macmillan for an assessment if you haven’t already been offered one, they also organised my PIP application – I didn’t think I would be eligible, but I got the full amount – and were very helpful with some other stuff too.

Iseeall, I cold capped and kept about 80% of my hair, although I refused FEC and had weekly paclitaxel instead. I think FEC is tougher on hair, but I have met a few people who have successfully cold capped on it. Disclaimer – I’m about to take on an ambassador role for one of the scalp cooling manufacturers, which I’m doing because I have heard about too many women being told that it won’t work or it’s very painful. I think you have to be very pro-active to get the best results as the nurses aren’t always up to date about how to use it properly.

Thinking of you very much today Royal. I too dislike the whole Pinktober thing.

MrsRhod, I’m sorry you’ve been through the mill recently. I was prescribed the horse pills, but ended up buying cod liver oil and a calcium supplement as I couldn’t get along with them. I have preventative 6 monthly bisphosphonates too. I’ve also been offered a hysterectomy (I have fibroids to top it all off), but I can’t face another major surgery unless it’s absolutely essential, so I’m waiting to see if I’m suitable for embolisation instead. If you’re now on anastrozole instead of tamoxifen, will your bleeding settle down anyway? I’m on letrozole and zoladex btw.

Sorry not to name check everyone. I will try harder to keep up and post if I have anything worthwhile to add!

Hi @graceadlerdesigns I'm in a similar situation to your DH but without any visible bleeding or weight loss. Iron levels last test was 3.4 so something isn't right. I had a colonoscopy and gastrotopy Friday last week and I've got a hiatus hernia and they took some biopsies. Worst bit of the procedure was the 'bowel prep' OMG!!

Strangely I'm not in the slightest bit worried - although if it was my DH who has these symptoms I would be.

Thank you everyone for the kind words. DH had a bad time of it last night and this morning. Sick, dizzy and losing blood. Docs apparently still not concerned... told him the sickness/ dizziness is likely unrelated and referred him for yet another iron blood tests to check his levels haven't plummeted.

@FinallyDecidedOnUserName
We have decided to keep a diary of symptoms, what he has eaten, what we have done each day to see if anything is making the bleeding worse/ better. It feels a little like we are clutching at straws a little but you gotta do something?!

@FinallyDecidedOnUserName I would he much the same... I had CIN3 a few tears ago and wasn't at all fussed, ditto a lump in breast I had to checked. I am usually quite practical and pragmatic but this pregnancy has sent my anxiety into a whole new level of crazy.

The bowel prep was really awful...i I really felt for him. Poor bloke looked wrecked after that and all the procedures.

Hi everyone
Leslie Nothing this week. Bronchoscopy next Monday. I have had a call from the sarcoma team today. They discussed the pelvis lump at the MDT today and want me to have an MRI scan. I will get an appt in the next 10 days.
I hope everything is ok with you

grace I hope the diary gives some clue as to what could be triggering DH's symptoms

Evening, just off to bed but wanted to pop in, hoping you got on ok today royal
Peaceful night to everyone

@graceadlerdesigns a diary is a really good idea.

Hi all! I’m a long time lurker, not much of a poster, although I sense that will change in the very near future now that I’ve found this thread

I’m just looking for a bit of advice if anyone can help

I had a colposcopy/biopsy last week and I’m waiting for the results. Although I’m sure it is cancer what I’m terrified about is that it’s advanced. I’ve read that symptoms dont develop until the later stages but I’ve already been getting severe stomach pains, pains in my right leg and heavy bleeding/bloody discharge. Has anyone had these symptoms and if so what stage were you when you were diagnosed?

I just want some idea of what I’ll be dealing with

Hi purpleunicorns
I don't have any advice I'm afraid, but I wanted to wish you all the best until someone more experienced comes along

Thanks wombat22, they said I should hear from them before the end of the week so I’m keeping everything crossed

Hi

Sorry purple I don’t have any experience of cervical cancer or gynae issues in general, so hopefully someone who does will be along soon :)

wombat I’m glad you’ve got a little bit of a break from appointments, though hopefully you’ll get your MRI soon so you can get more information about the pelvis lump

royal I hope you’re not too bruised after the biopsy. Do you know when you’ll get results? I have my fingers firmly crossed for you

Finally I hope you get some answers soon. Did they find any polyps or lumps, or are the biopsies for coeliac disease etc?

Flippy I’m glad DS is doing well :)

Waving to everyone. Goodnight

purple I had severe dyskariosis and had quite a bit removed in a colposcopy. However, I didn't have any symptoms.

Have you had regular smear tests leading up to this?

Hopefully someone more knowledgeable will be along soon but I would try and keep thinking positively. Have they given you a turn around time for the results?

finally I too was going to ask if they are testing for celiacs. That is what dh is being tests for although there is a 5 week wait for results.

No I’m ashamed to say I haven’t kept up to date with smears, absolutely kicking myself for it now The hospital said I should hear back by the end of this week, not sure if I’m waiting for a letter or a phone call

Morning lacies, love to all especially those having a particularly shite time at present , chewing thinking of you .
mrsrod sorry things are still up in the air, i get a crawly feeling in my arms and a bit in the legs, i thought it was just me never thought of the tabs . I really detest the anastrozole I feel ancient at 50 and the thought of another 4 years doesn't bear thinking of but I am to scared to stop in case the cancer comes back! My hair came back wild after the chemo but i am convinced its getting thinner don't remember be able to see my scalp quite as much (I know I should be grateful i have hair now).
royal the line you wrote about thinking you have forgotten how to cry has really struck a chord with me I feel like that bit has been switched off since diagnosis, weird .
leslie hugs to mama elephant for keeping the thread in order xx
Squidges to all that need them

Hi

I’ve been lurking here a lot in the last fortnight, from phone call (after I’d had bloods taken for a totally different reason) calling me to a hospital appointment the next morning, to confirmation of the diagnosis of leukaemia at the start of this week.

It’s CML - the sort that can respond very well to treatment.

Telling the DC (teens) was something I dreaded - I’d managed to hide the appointments from them as I wanted to wait for the confirmed diagnosis, not worry them with a provisional one - but that went much better than I expected. I need to tell my mother, which always worries me - as it’s just Not Fair for her have another bit of bad news.

Only after that will I go more public. So a couple more weeks under wraps, during which time they expect to swop me off the current chemo and on to a biologically targeted drug. But it’ll be several more weeks before they’ll be able to test to see if it’s working.

helly I'm sorry you're having trouble with the anastrazole too, it really is a horrible drug. My hair is very thin now, the same thing happened with the tamoxifen at the beginning but it did start to grow back. I'm hoping the same will happen with this. I was beginning to feel that the joint and muscle pain was subsiding but after a busy weekend walking a lot I'm knackered again. What's causing the most concern though is the ever present dull ache like period pain and now my breasts both feel really painful like before a period. I just don't understand what's going on, I'm hoping to get called back to gynaecology this week and perhaps having the operation is the right move. I've had some lovely messages from wine who has had it and coped well.

royal how are you doing, we're all thinking of you?

vampire what a shock to get an unexpected diagnosis but welcome. I kept quiet for a couple of weeks whilst my youngest daughter did her AS exams. Three years ago, it's horrible knowing you are keeping a secret that is really going to upset your family.

purple welcome to you too. Much as we all want to it's impossible really to compare ourselves to others in order to get some idea of what we're facing. Every will say waiting for results is the worst part, jus distract yourself as much as possible and don't Google.

flippy I haven't been offered bisphosphonates but will stick with the horse tablets, I'm getting more used to them. I need to do weight bearing exercise, I used to run but my body aches so much and I'm not sure my ankles could take it. I know what you mean about not wanting further surgery but this uncertainty is not something I want forever either. Dh works from home, my girls are now away, I could manage a few weeks out of action. I've tried asking my breast nurse how many women with breast cancer end up having a hysterectomy but she never answers properly.

Hello to everyone else, so many a the moment, we're going through a busy spell. elporto are you still there, how are things?

Just coming back in after a restorative 4 day holiday in the Arctic. It was so nice to feel a bit alive rather than a bit at death's door. The Northern Lights popped out while we were there so I feel very lucky to have seen that and lucky that my onc gave me some extra steroids for a holiday boost!! Sending love to everyone awaiting test results - grace before my mil was diagnosed with coeliac disease, her symptoms were pretty grim so try to stay positive until you have some formal news. Glad you are feeling better wombat - I think sometimes a bit of a cathartic wallow is necessary ... and completely natural. Good luck with your treatment vampire and to everyone else xx

nicky can I ask where you went? I want to take a break week after next and yours sounds like a possibility. I went to Iceland in June last year and thoroughly enjoyed that.

Vampire so sorry to hear your news. My ex had leukemia when we had teens. Long story short - he had a bone marrow transplant from his Dsis and is well 7 years on.

Have started to develop a couple of sore red skin patches. Any recommendations for cream? Hopefully they won't last too long as I've just finished cycle 6 and go on to Bevacizumab now.