Hot flushes, tears and headaches

[Mamadeacs]

Enjoy your g&t! Hopefully I will join you on the radiotherapy thread very soon. Xxx

[Caro]

Nikki, two weeks till radiotherapy CT planning and tattoo then RT starts two weeks after that. Always wanted a tattoo but kinda imagined a dragon lol. Go easy with that cream lifting! No twisting or sudden movements! I am 2 weeks post op and the bad boy still let’s me know it’s unhappy if I have a sneaky hoover or lift anything. Consultant said today that even though you look healed on the outside, there is a lot going on inside. Glad you enjoyed that wine. I have a large gin gripped in my hand as I type lol. I have tried to be good since diagnosis but tonight is “special”. 

Helena, thank you for the great advice about the RT thread. Ironically I am a radiographer, albeit a diagnostic one, not a therapy rad, so it’s a bit of a shock being on the other side of the radiation. New life experience to chalk up.

Caroline xxxx

[ladybowler]

Caroline

Oh that is great news onwards and upwards to radiotherapy, and I really do think it will help the other ladies who are in the position as you that it is possible to achieve it.

When you are ready come over to the going through treatment radiotherapy section, we have a monthly thread on there for ladies going through it, but for now enjoy your good news

He he I would love to have seen the consultants face 🙂 🙂

Helena xxx

[Mamadeacs]

Oh Caroline I am so so pleased for you, I really am and in a couple of weeks time I’m sure you will be saying the same back to me. Don’t feel guilty we are all in this wretched treatment process, without this forum and chats to different ladies I’m sure I wouldn’t be coping as well as I am.
I am feeling good in myself, still painful and I pulled it picking cream off my bedside table last night! A friend who had bc 3 years ago came this afternoon with wine so I’m tucking into that tonight. Do you know when you RT starts? Nikki xx

[Caro]

Hello! 

So happy to be able to say I finally got those clear margins! I was so convinced that  they wouldn’t get them that I was already choking back the tears when the consultant came into the room. Then I realised he was smiling! Next stop is the radiotherapy hotel. Never thought I would feel so thrilled to be booking in there. 

This is the first time since this nightmare began in July that I have been told some good news. There have been so many scary conversations in those consulting rooms. Almost hard to process that things went my way today. I also feel almost guilty for posting this when you haven’t got your results yet Nikki, like other ladies out there tonight.

After reading some of the forums I felt resigned to a third WLE or oncoplasty. I felt like these clear margins were elusive beasts. I have posted this in the hope that the WLE second timers take comfort that clear margins are indeed possible. (Plus, nothing scary re the golf ball seroma...... gonna leave it to heal itself).

Nikki, hope you have had a brighter day today? 

Helena, those tough pants were awesome (consultant was bit surprised to see them tho matched the compression bra well). 

Love Caroline x 

[Mamadeacs]

You’ll be on my mind tomorrow ...love the booby prize pun too, shows we haven’t lost our sense of humour and yep I can’t wait to hear ‘radiotherapy next’. Xxx

[ladybowler]

Caroline

Will be thinking about you. let us know how you get on when you can xxx

[Caro]

Thanks so much Nikki and Helena for being there tonight. Feel worse tonight than I did last time around waiting for these damned pathology results. Appt is not till 4pm so gonna have to keep busy and tidy my knicker drawer or something (!).  I never thought I would want to hear the words “radiotherapy for you now girl”  so much in all my life. What a booby prize (s’cuse the pun 🙄).

Nikki, give into that drained feeling and let yourself rest and repair in the workshop. Body’s way of helping you process all the fear and shock of what is going on. I hope you sleep well tonight and wake up feeling that bit better tomorrow. You had to be brave on Monday so it takes its toil. You did good, Hun.

I will let you know how things work out tomorrow. 

Big hug ladies,

Caroline xxxx

[Mamadeacs]

Hi Caroline...I am sending you a HUGE HUG for tomorrow and hope it’s good news. All we want is to get to the point we have a treatment plan instead of the limbo land. A few weeks ago I felt fine and now I feel completely drained, I know it will get better and I feel bad that everyone is worrying about me.
I look forward to an update from you tomorrow.
Lol Nikki xx

[ladybowler]

Caro

You have brought a big smile to my face, imagining you rocking all the way to the consultants office xxx

[Caro]

Aaaah, that has made my day! I will rock those pants all the way to the consultants office tomorrow. You have made me smile big time 😄🌻

Thank you!!!! Xxxxx

[ladybowler]

Caroline

Sending you a pair of the tough pants for tomorrow and we will all be there in the pockets supporting you

Helena xxx

[Caro]

Hello! 

So pleased to hear those pesky sweats have improved a bit. It’s bad enough having the diagnosis but equally crap to lose that control over your life that HRT gives you. They have left me on the pill till I get through the surgery but I am pretty worried about what the effects wil be.

This may be something for you to think about: My consultant said that usually HRT and the pill are out the window, HOWEVER some ladies have such a crap time they have to rethink this and put them back on it. They mentioned a type of HRT that was not quite as strong as most but would still lessen symptoms, my Breast care nurse said it was better to have these sort of discussions with the Oncologist  rather than the surgeons (when we both get that far) because they are experts on drug implications. Hopefully, you will ride this out now but just wanted to share this with you.

Looks like you and I got diagnosed about the same time! DCIS too, 18mm, found on routine screening mammo. Didn’t clear one of the margins so had 2nd WLE two weeks ago.  Judgement day Mark 2 tomorrow,  get the results late afternoon. I hit the shops today to try to distract myself but it is hard to silence all those worries in your head isn’t it. What is it about 3am lol!!! If I get clear margins 2 mo, then I will feel like I have won the lottery. Rads next. If not.........hmmmm, let’s cross that bridge 2mo. 

Have developed a seroma alas, so bit of a golf ball on the poor bad boy now as well 🤕.

I know what you mean about family and friends. I hate putting them through all this. I have great support but don’t think I have ever felt so lonely at times. 

Hang in there, Hun. Sorry you are sore. Everyday will be bit better. I suggest chocolate, a ridiculous reality TV show and a weep on the phone to a mate (then more chocolate).

Caroline xx

[Mamadeacs]

Hi Caroline...we are the same age too! I’m feeling a bit rough after the surgery on Monday I’ll be honest. Yesterday I think I had a reaction to the injection of radioactive stuff they put in before and my face swelled up and went really red and although I can still see it, it has gone down a lot. My eyes/nose were really puffy and looked like I had been sobbing. I can’t get a bra on this time so managing in a hidden bra vest top and trying not to move and jiggle too much. It’s early days. Coming off the HRT for me was the hardest bit. I had been on it 10 years as I had a premature menopause (hysterectomy at 35). While I was reading what people take for the sweats/flushes anecdotally Gabapentin was one drug. I was already taking 1 300mg a day for sciatica. I spoke to my GP and she agreed for me to up it to 900mg and the result is astounding. Within a few days I went from 40+ a day soaking wet sweats to around 10 damp ones, I am very pleased at that and can cope now I don’t have soaking hair and sweat running down me.
With my margins the mammo/biopsy showed it was just non-invasive DCIS 17mm so I thought easy peasy take that out and have rads. Surgeon said she took double out to be safe but it turned out to be invasive and deceased right to the edges of the margins top and bottom. She was equally surprised to be honest. I have to wait 3 weeks again for my results and by the end of the second week I start getting a bit twitchy. I will cope with whatever the outcome is I just want to get to the point at which I can start the treatment, it feels like it’s dragging now. It’s heartbreaking seeing friends and family upset too, I wasn’t expecting their reactions.
I have found this forum invaluable, everyone is amazing support to each other. At first I felt like my experience was quite petty compared to some but I realise now it isn’t.
I truly hope you get clear margins this time, do you know what the plan is for you yet?
Nikki xx

[Caro]

Hi Nikki,

Guessing from your last post that you didn’t get those clear margins and you have had second WLE? So sorry to hear that. Me too, alas. Hope you are recovering well today, though have a good idea about how fed up you feel having had to run at this again, I find out in 48 hrs if my second WLE has clear margins this time around. Tense time!

Rest set up now and try to be good to yourself while you are playing the waiting game again. I have found hat worse than the procedures so far.

Really sorry about you having to come off HRT. Once again, there are similarities between us because I have been told I have to come off the progesterone pill and I am fearful about what will happen next. I am 52 and have been on it for 30 years because of difficult periods. I am so worried I am going to launch back into bad periods or menopausal symptoms on top of this rubbish diagnosis! 

Hope it went ok yesterday and you sleep well tonight. Hang in there.

Caroline 

[Mamadeacs]

Thank you Emily for this. I’m just waiting to go down for further surgery in an hour but may get in touch in a few days. Nikki xx

[EmilyA_BCN]

Hi Mamadeacs, 

Emily here from Someone Like Me at Breast Cancer Care. 

I'm sorry to hear about your tough week last week. You've come to the right website for a friendly chat.

I wanted to let you know that Breast Cancer Care has telephone volunteers who have been in a similar position to you - and they know what it feels like when you need some support from someone who understands.

If you'd like to speak one of them, then feel free to send us your contact details through this link and we'll get in touch to arrange for a volunteer to call you.

I hope this helps

Emily x

[Ali49]

So sorry to hear that you've had such a tough day. First of all take some painkillers if you havent already. Dont be brave. Pain ruins everything! The days before results are also tense so that wont be helping your emotions either. Go easy on yourself and get some rest xxx

[Mamadeacs]

I’ve had a rotten day today and feel in need of a friendly chat.
I had WLE surgery just over 2 weeks ago for DCIS, I was told non invasive but don’t remember a grade being mentioned. I had been completely matter of fact about it until now but results due in a couple of days and I feel like I’m not coping the same as I would expect.
My surgeon tested me to see if I was hormone positive because I had been on HRT for almost 10 years because of a premature menopause and I think because my Mum got bc at 55 just a few years older than me. It came back positive so my BCN phoned me the week before surgery to say stop taking HRT that day. The hot flushes started by the end of the the first week and now 3 weeks on they are unbearable. I counted 30 by 3pm today. I have become sensitive (cried at Chizzy crying on Strictly!!), had random tears at the weekend and today and a couple of full day headaches that I can’t shift.
I’m sure the mood change, tears and headaches are all to do with stopping the HRT. I’m not sleeping very well from the hot flushes and still not comfortable on either side in bed. My boob is still really achey and bruised although the scar has healed brilliantly. The area that was removed was deep in my cleavage area and fatty tissue from above and below was pulled into it to avoid a big dent but this is where I think the pain is from. Each time I move forward or sideways when my boob moves is painful. The area is now very dented and feels like a bag of peas underneath, it is also pulling the skin so I think the fat hasn’t stayed put. Does this happen often? My surgeon said the area taken was right back against my chest wall and it would be painful from moving the muscle and nerve.
Sorry quite a long purge of feelings. I have been telling friends and family I am absolutely fine but keeping it in eventually doesn’t help. Has anyone else had anything similar? Hopefully Wednesday results will say they got clear margins and when my RT will start. Xx