All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

That's good news fly. I'm a sahm too but with university age children now, one in the 6th form at diagnosis. It takes a few days to get over the anaesthetic and as ever you can't lift for quite a few weeks, not ideal with a toddler I know. I was very protective of my breast for quite a while. Although the surgery isn't too painful, if it gets knocked it is. Crowds were not good. I didn't drive for about six weeks, my DD had just passed her test and was more than happy to play chauffeur but I could have done after a month. It was my gear changing side. I was certainly doing things around the house fairly soon but we had builders in for a month so it was a losing battle. Good distraction though.

By the time I had rads six weeks later I was feeling fine but I had been able to rest. Dds are self sufficient and Dh works from home.

As for the tamoxifen, I've been lucky. A few weeks of hot sweats at the beginning and strangely a few weeks last year but nothing now. My periods have disappeared and I'm being monitored for womb changes but I feel absolutely fine. I'm 52 and not yet menopausal apparently.

It was the SNB site that caused the most discomfort, armpits are complex things. Make sure you do the stretching exercises everyday. It's hard at first but be persistent to avoid loss of movement later.

Happy to answer any more questions.

Hello flychickie. I can see mrs has as always done a great job of welcoming you and i second her advice on doing the stretching exercises. Having a treatmnet plan clearly laid out is very helpful. It makes you feel more in control as you know what is coming and are prepared for it. I just finsihed the rads and within a few weeks will probably be prescribed Tamoxifen. I am a bit anxious too about the SE so will keep an open mind till I know how it will be for me.
Mrs, anniversaries are always going to be a mixed bag aren't they. On the one hand , they mean you have made it to this point, on the other you become fearful and anxious about the appointment ahead. I will be thinking of you and sending as many positive vibes as I can. It has been 10 months since my diagnosis. I feel like i have lived another life.
The rads have been tough for me mrs. I guess a combination of the number of sessions and my liability are to blame. My affected area is dreadfully affected. I never imagined it would be like this, but we are all different of course. Now I have finished my sessions, I am just glad for it to be over.. They have warned me the next few weeks will be hard still even though treatment has stopped. I have some broken skin which is painful and totally difficult to manage because it is oozing( sorry for too much info!) but they told me this is all normal and not to worry and that the healing process will start and hopefully not take long.
DC wanted to go see the Superman Vs Batman movie, so I took them and we had a nice meal afterwards. Not really in the mood for celebrating. Just want to turn the pages!
Waving to everybody else.

H Royal, it's sounds like you are really sore. I had had enough after 15 sessions even though my skin remained intact. It's also quite a challenge to sit in a cancer dept every day for five weeks, it gets to you, there's no escape. I'm sure your mind will repair itself along with your body. My breast felt really hard after the rads, I once described it as well done steak as opposed to my other one which was like rare steak. They're both the same again now but it took time to soften. It's still significant treatment, the list of things that can happen to you as a result is very long, I can remember signing the consent form in a haze after being told about the risks. But you just go along with it.

I hope you start to feel better soon, the end of treatment is a strange time. Probably a time I felt most down, when you take stock and have time to think about what's just happened. But two years on, although I think about it everyday it doesn't dominate life any more.

Evening, Sorry you're having such a bad time with the rads royal. I've had my pre op today and due to have my op next Weds. Not looking forward to it but it'll be another part of the treatment that's done then 25 sessions of radiotherapy. Think by the end of it all there won't be much left of me but I'm looking forward to getting some energy back and that's what's keeping me going. Saw my BCN today who was very positive and upbeat which was good. Hope you all have a good Thursday!

Hello and thank you rover. Wishing you a speedy recovery post op. had 28 sessions of rads. I have big breasts and am naturally tanned so was always going to be a candidate for severe SEs.
It is so helpful to have a positive BCN. As for the energy, it does tend to go down doesn't it? i do apologise but I can't seem to remember if you had chemo or not? I am slowly regaining some energy, but am far from being anything like my pre cancer treatmnet mode.
Would love to hear from boobz who is always exercising. Wonder how her marathon went?
Take care all.

Morning everyone.
Wishing you a speedy recovery from the rads royal. It's interesting about skin colour affecting the side effects, I wonder why having darker skin is worse? I'm very fair, what will it mean for me? I think I will be needing lots of sessions similar to you as node positive also.

Thank you Fresta. When the consultant told me i was more likely to get adverse skin effects becauseof my skin tone it did not make sense as i assumed darker skin would not easily "burn" but he was quite right. I could see why the size of my breasts would matter but not my skin tone( i am tan not black).
I hope your side effects are much easier to deal with. I think the number of sessions I had was a factor to be honest in the severity of my side effects.
To make me worry I found a tiny slightly raised brown mole on the back of my right hand at the base of my thumb( not my affected side) I never had one there and am now quite anxious. I am seeing my oncologist in ten days and will definitely show it to him.

Thanks royal I had no idea skin colour made a difference with radiotherapy! I've had 7 sessions of chemo so hopefully that's all behind me and I'm just starting to feel a bit more energy creeping back.
mrs we're the same age and our children sound similar ages too. I'll be going on to Tamoxifen after Christmas so hoping that the se aren't too bad. I'm already getting hot flushes that started with the chemo but they're manageable and I'm saving some money as I've turned the heating down

Hello all, I wonder if you can advise me.

Last week my left great developed a large, painful lump, armpit felt a bit full.

GP referred me to the breast clinic and put me on penicillin in case it was an infection, and the lump largely went down and most of the pain went away. Happy days.

Today I noticed it was a bit painful again and have come for a hot bath straight from work. Prior to seeing the GP I had squeezed the nipple to see if anything came out. Nada. Tonight, while in the bath, I have just checked and a tiny pinprick of blood oozed out the nipple, twice. My appointment is not for another two and a half weeks - is this new symptom worth asking for a fast track?

*great = breast

Hi whisky, obviously I don't know if this new symptom is going to be an issue but it is a new symptom therefore I think it would be very reasonable to ask for an appt under the two week rule.

Thank you Rhod. I am out of he bath now and able to wipe on tissue (sorry for the TMI) and it is more like a black green pus, I think.

I will phone the GP tomorrow and ask to be bumped up.

Morning all, have only just caught up as had a bit of a mad week trying to sort things out prior to start of chemo.
sleepy sorry about your news and hope you have some idea of a treatment plan now.
ginger flychickie welcome
elimandrina hope you are OK
royal congrats on end of rads woo hoo.
Pepper I had 1st fec on Wednesday and was shitting myself especially when I went for a wee and saw red in the loo nearly had a stroke thought I had started a period for the 1st time in 5 years as forgot about the chemo making it red. Having picc put in for next one. Went to try wigs last Saturday with mother and it was hysterical i have never laughed so much she must have thought we were bonkers!
Sorry to anyone missed out been a busy thread and my brain ain't working quite as well at the moment. Hugs to all x

Hi everyone. I've just been diagnosed today with invasive ducal carcinoma stage 2/3. I'm 33 weeks pregnant and also have a 4 year old little girl. I'm so scared and can't stop crying. There is lymph node involvement and I'm terrified it may have spread. Having an op on the 21st of April. I'm just absolutely terrified.

Hi all.
Sorry- I have missed quite a bit and have a lot of catching up to do.

Sleepy- am so sorry you had rubbish results from your scan. What are they going to do to help? I hope you have a plan in place for you.

Welcome Ginger and Flychickie.
Flychickie- My friend and I 'did' breast cancer treatment together and are in our early 40s. Whilst I do have the gene she didn't and is now taking tamoxifen. At some point down the line it might be worth looking into Breast Cancer Care's 'Young Women with Breast Cancer' conferences. We found it very helpful and there were people there at different stages in their treatment and those who were post treatment.

Fresta- glad that chemo has finished for you- are you regaining your energy gradually now.

Royal- end of rads is great. Hope your skin recovers quickly.

Lily- glad you had a nice holiday and hope chemo SEs are staying away.

Mrs- fingers crossed for your mammogram.

Thinking of everyone else.

Rust- this is the place to come to but sorry you have to. If you have just found out today then understandably you will be experiencing a huge range of emotions. It must be very difficult, especially as you are pregnant. Do you have another follow-up appointment to go through your treatment plan more clearly? Hopefully you have been given a Breast Care Nurse as a point of contact and support, although I know not all hospitals have them.

Lymph node involvement does not mean that it has spread. There are lots of people here who had it in their lymph nodes but it hadn't gone any further. It is an understandable worry. Have they mentioned any further scans?

There are lots of people here with a range of experiences who can listen and support you. This bit really is the worst; once you have a plan in place and have more information you will feel more in control. Do you have anybody with you now supporting you?

Rustcohle I'm so sorry to hear of your diagnosis. It's quite common for breast cancer to spread to the lymph nodes, I had 2 nodes affected. I had a mastectomy, axillary clearance and am halfway through chemo with radiotherapy to follow. My dc are older, 12 and 15, but there are others in this group with babies and toddlers.

Are you having a mastectomy or WLE, and are they planning on removing all the nodes during the surgery? I know that being pregnant and having this diagnosis is awful, but at 33 weeks your baby is reasonably mature. You will need a lot of help though, and don't be afraid to ask for it. Breast surgery and chemo are all doable with young children. You can do this. It's normal to cry a lot at the beginning. Dh and I both cried, but seeing your team and getting a treatment plan really does help.

Hi Speedy thanks for your reply. My dh is with me and is very supportive but obviously upset himself too. The op is to remove the tumour and lymph nodes and then radiotherapy after I've given birth I think. I've had a chest x Ray today and have a liver scan on Tuesday. They can't do the full testing apparently because of the pregnancy. I do have a breast care nurse and she was lovely. It was all just so much to take in. I keep looking at my little girl and my heart is breaking.

@speedypenguin thank you for the advice. I plan to go to one of the conferences in London in June..It took some searching around, there's not much out there for people my age, unless you're on Faceache. It's nice to know someone has been through this, but I don't find people my age now, if that makes any sense? Don't get me wrong, I totally identify with anyone who has gone through this - my mother had breast cancer 10 years ago and there is nothing I would love more than have the chats with her about what she went through but she passed away 6 weeks ago from unrelated pancreatic cancer...I've a lot to work through right now but I will deal with losing the love of my life later, I have this to tackle first. counselling will be a definite, though not just yet.

@rust you must be feeling so stressed, but hang in there x

Has anyone else here had counselling?

rust- We all understand how you feel. I felt the same way when looking at my boys. Am now two years post diagnosis and still here, as are lots of others who are a lot further on than I am. It's good that they are scanning you as hopefully they will be clear and that will put your mind at rest. They just need to check.

Fly- so sorry about your mum. I haven't had counselling but I know others on here have.

Flychickie - I don't post much anymore - was diagnosed October 13, 8 weeks after the birth of DC3. I'm 38 now, was 36 at diagnosis. It's pretty hard being so young with BC, lots of head tilts which I found hard!
I have BRCA2 (no one knew anything in my family till I was diagnosed) but I had a bilateral mastectomy, chemo and radiotherapy. I'm pretty much back to normal now, have some nerve damage in my left arm and they're not sure if I can have recon as my skin is a mess from rads, but generally things are good.
If you have any specific questions, please pm me!
Hope everyone else is doing well.

Rustcohle, welcome, though I'm so sorry you have this to deal with. I'm typing in haste but just wanted to say that if you look back on this thread for Amberlight's posts, they're brilliant for offering calm, reasoned words at those moments when one's having a panic.
thinking of you very much and hope Do get as much practical help as you can, too for after the surgery.
Sorry to post and dash, wishing good weekends to all.

Rustcohle, so sorry about the diagnosis. I totally understand as I have two children and they were the very first thing I thought of when i received my diagnosis. Obviously you being pregnant makes your situation all the more sensitive as regards scanning and all. The period before you start treatment is the toughest. The feekings and thoughts are like a Tsunami : Disbelief, confusion, acute fear...but trust me it will get easier once the treatment plan is set and you can focus on that one day at a time. We are all here for you. We have different treatment plans and all but there is always bound to be someone here who is going through or has been through the same treatment. You can come on here to ask, to chat or just have a good rant. It makea a difference talking to people who have been or are where you are now. Take care.

Speedy hello and good to see you here again. Thanks for the mention. The rads are over but I am quite sore and down because of the skin reaction which has been bad for me. I am just trying to focus on the healing now!
whisky, i truly hope it is nothing and that you are reassured with good news.

Welcome to the Newbies though I wish you didn't need to be here. This is a good place to come and vent and get advice - from the serious, hard stuff to nail varnish!
I saw my consultant yesterday who said that the latest chemo - CMF (I think ... I can't remember the acronyms and keep muddling it up with FGM ) isn't keeping the TMs down and he will switch me to weekly Paclitaxol - probably starting early next month. So the baby hair that was growing back will go. I may invest in a new wig as the one I have dates back to my first chemo in 2013 and is starting to shed hair (in sympathy!)
I shall also have a scan to see if there has been further spread ... Cue Scanxiety!!
Quiet weekend for DH and me as neither DS will be home (DS1 is in the Middle East ... Aargh!) so we shall keep warm and catch up on TV.