September Sunbeams 2014

[1852]

Hi paulS glad you didn't hav a clot I know what you mean about tests but at least anything will be spotted early .since chemo I have developed asthma so my breathing isn't as good as it was and I seem to get more coughs now but hey ho . I was never told my.stats I didn't want to know bet you are pleased with your new stats . When does trial finish do they tell you whether you had placebo or not .

[PaulS]

Hi Den and everyone, 

Lovely to hear from you. I'm well, though have has several ups and downs over the past 18 months.  Because of the trial I'm being seen much more often and they seem to be incredibly thorough and order additional tests which on the one hand is great but on the other is scary.  But I knew this might happen when I signed up so will keep with it.  I still don't know if I'm on the actual drug or the placebo (it is a double blind trial) as I seem to have some of the rarer symptoms/side effects but not really the common ones.  So, this has been the second time I possibly have had pneumomitis (though could have been horrible winter virus) and the first time they though it might have been a clot on the lung so had to have a CT scan. No clot thank goodness. Will keep you posted. 

So ladies, 4 years on and counting!!!!!!!

At my last annual check in August I was told that they had replaced all their databases (apparently they were very out of date and not discriminating enough) and the doctor ran me through the new database.  Four years ago I was told I had a 78%  chance of being OK.  Of the 22%, 11% of new primary tumour and 11% secondary. Now they do 5 and 10 year survival rates.  I have 93% chance of 5 years and 83% of 10 years!  She asked me if I wanted to know and I told her that I wasn't sure as I wanted this out of my head.  However, she had been typing my information in as we spoke, and told me I'd definitely want to know!!  SO much better stats aren't they?  

Ladies, I send you warmest regards and hope you are all OK.  Let us know. Love P xx

[1852]

Hi den here lovely to hear from you PaulS hope you doing OK are you still running ? I have been discharged from oncology and surgical clinic this year being triple neg there is n reason to go now .i would love to hear from. other beamers but last post was mine wishing all a good Xmas last year and we are nearly at this years .two of my old work friends have been diagnosed with breast cancer this year and I lost a very good friend of 40 odd years to cancer in the summer (not breast)  and also acouple of male friends one now palliative care so seem to be surrounded with it . I feel lucky I've had these extra years to enjoy my grandchildren I have wittered a bit aren't I . Take care and keep in touch🎀

[PaulS]

Is anyone still looking at this forum? I often wonder how you are all doing. Xx

[1852]

Hi to any beamers out there just want to say hope you all have a good Christmas and a healthy new year 🎄🍾🎀 best wishes to everyone on the forum too.

[1852]

Hi pam what are we like with chronic pai but hey it could be a lot worse  my oh as tinnitus he wears tiny hearing aids but he says they don't really help we are like ke a couple of crocs but keep going . Glad you got your 3 year clear . I seem to remember you had a lot of cysts didn't you . Are you still on Facebook was it warriors .Dont think I'll be going topless anytime soon either🙀 Take care keep in touch DEN X

[Whitfield]

Hi Den and PaulS,

Glad you’re both doing okish.   I’m still here but have lots of health issues now.  Pain under arm has never got e away, nor has pain from hand surgery.  I also now have Objective Tinintus or so they think.  Waiting for private tests as NHS was useless.  Odema on Breast is kept under control but now have slight odema in arm. Just has three year mamo and all okay.  Cycst remived right side non BC breast has scared badly but hey I’m not going topless.

im also still in a trial for Triple Negative but all the hospital wants is my blood now and then.  Something to do with doctors being able to know the exact ami7 t if chemo is best for outcomes.  You might not remember I had eight and 20 rads.

sending much love.

pam x

[1852]

Hi P glad to hear that you have got the all clear . The trial sounds very good but I understand your concern regarding being back to have tests again ,they still struggle to get blood from me so I wouldn't be any good ! I too wonder about the other ladies from this forum I just think they are ok and getting on with their life's . My issues arnt too bad just doesn't let you forget  but I am making the most of life spending time with GC who wear me out but it's a good tired our youngest is now 6months and a very smiley chap and is very cuddly 😊🚼you do very well keeping up your running , take care let me know if you get on trial .Den🎀

[PaulS]

Lovely to hear from you Den!  I'm well - and have just had the all clear from the three-year check so am very relieved. At the appointment they asked me to be involved in a huge clinical trial. 2000 women from UK, France and Belgium.  All like me had non-specific cancer, WLE and node clearance so have a higher risk as there was node involvement.  It involves taking the drug - alongside the Letrozole - that they currently give to women with very advanced BC. Drug for 2 years, double blind so half get placebo - and 5-year follow up. Lots of blood tests and other scans.  I have had the two phone calls from the research nurses, and am meeting the oncologist on 12th October to sign up (if they want me!).  I have several anxieties about it. The list of possible sdie effects is long, and I worry that I will become 'medicalised' again, as I have moved on in my head (mostly).  The UK involvement is the Edinburgh Cancer Centre, so at least I know two of the oncologists. I'll let you know how it goes. 

Ladies, I often think about you and wonder how you are all getting on. Den, I'm sorry to hear that you are still struggling with health issues as this must be so frustrating and debilitating and will stop you from finally putting this all behind you. Let us know what you decide about the surgery. Take care.  P xx

[1852]

Hi to any beamers out there thought I would say hello . Hope everyone doing ok . I was back in waiting room for a couple of weeks due to swelling of breast tissue under mastectomy scar which to be honest as never really settled it is very painful at times anyway had u/s and scan and it shows a large haematoma . I am seeing surgeons in 6months but trouble is there's no guarantee if I have it cleared that it won't come back so have to decide if risk of op is worth it . 😱I am just happy it wasn't anything else 🙂It would be lovely to hear from any of you . I know some do Facebook but I'm not on there . Take care and love to all DEN

[Whitfield]

For some reason I'm not getting g alerts so have missed these.

Pauls - Nice to hear from you and know you have moved forward as have I.  I still get a lot of pain and lymphodeama but am still here.  This month I'm two months post surgery.

I. have a minor op (yes, another one) to remove cyst from breast tissue as it gets infected and is affecting my MDL.

Bio of vulva but all okay.  Lady part had eczema!  Took seven years to get final diagnosis but now no itching as cream is great.

Hand ops still give pain but I have full movement 😊

Sending ❤️ 

pam x

[PaulS]

Warmest congratulations! What is his name?
My newest grandson will be 1 inJune! Unbelievable! Stay well ladies. Pxx

[1852]

Hi beamers hope everyone doing ok just thought I would let you know we got another grandson this week we are so lucky 🍼

[1852]

Hi paulS. It's lovely to hear from you and that you are back to enjoying life I retired just a couple of months before I found out I had cancer must admit have no regrets . It is hard to believe it's nearly 3years ago I would love to hear how others are doing but I'm sure they are also getting on with life . We have a new grandchild due in approx 5 weeks so getting excited now . Hope your family ok  take care x Den 

[PaulS]

Hi ladies, Just dropping in to check that you are all OK and that you are getting on with life and enjoying yourselves. I am now on sabbatical - January to June - and my intention was to see if I would enjoy early retirement.  I have to work of course but can suit myself when and how I do this and the freedom is quite liberating! The only thing I have to do is my supervision but again I can make sure that I am only spending one day a week at work to do this. My daughter suddenly needed help as she did her back in and it was good to be free simply to step up and help her.  

Hard to believe we were in the middle of chemo in 2014 - and here we are nearly three years later!  I still can't quite believe that I have had BC though I just need to look in the mirror!  But, I'm fine and grateful to be through it and out the other end and leading a normal life again. I hope that all the niggling after effects of treatment have eased and that you are all feeling better. I know that some struggled and they seemed as if they would never be resolved. 

Anyway, I wish you all well and hope that life is being good to you. P xx

[PaulS]

All the best for 2017 lovely ladies. P xx

[1852]

Hi beamers just wanted to say happy new year to you all . Best wishes to everyone on forum those who 

have finished treatment .those just starting and those living with the big C ❤️💐

[Whitfield]

Hi Den and PaulS,  I'm still here and recovering.  Just after effects from treatment which I would agree is vicious.  Still seeing pain clinic, lymphodeama, lady garden problem and tinnitus.  But majority of time I'm well and enjoying life.  Yesterday did some shopping buying bits for Christmas treat and then to cinema.  Husband is now part time in a much less stressful job so we try to do things.   

Put in lots of spring bulbs which gives me something to look forward to.

Hopefully appointments will subside as I fully recover.

sending love and best wishes for good health onwards.

pam x

[PaulS]

Lovely to hear from you!  I'm fine and I hope most sincerely that you are all fine as well.  My lovely grandchildren continue to delight and the baby is now 5 months old and developing a real little personality. I continue to work which for me is definitey the best thing at the moment though the thought of early retirement has begun to creep seriously into my head  - especially when it is cold and I don't want to get out of bed!  I also find that I can't be bothered with some of the nonsense and politics at work which in the past I would take in my stride. However, I applied for and got a sabbatical  - 6 months from January to June - so while I will of course have to work I can be away from the actual buildings for most of the time and won't have to do any teaching, marking, meetings etc etc which will be great! Just supervision but I can organise that to suit me to a significant extent.

I find I can go long periods (whole days) without thinking about BC and then it suddenly to pops into my head and I can't really believe it has happened!  But I try hard to get it out of my head quickly and not dwell on it.  My friend who went through this 13 years ago told me she never once though she wouldn't be all right after her treatment and she had an endlessly positive attitute and I am trying to do the same.  I do have twinges and tender bits but the consultant said this was completely normal and would be for years - as they had assaulted my body with surgeries, chemotherapy, radiotherapy and now hormone drugs and I therefore shouldn't be surprised.  He also said that ther VAST majority of women who return to the clinic after treatment are there BECAUSE of the treatment which is 'vicious' - his word. My hair has returned again and is thick though much more wavy and at time looks fluffy. Skin, nails, eyelashes, eyebrows all fine again. And most importantly I have lost the hollow awful look that came with the chemo for me - not a good look believe me!

Ladies - I wish you all a lovely Christmas and a happy and healthy New Year.  You all deserve it.  Like 1852 I think about you all and I hope life is being good to you. Stay healthy and happy. With love, P

[1852]

Just thought I would log on to see how everyone is and to wish you all a very happy Christmas and a healthy 2017 .we are expecting another grandchild in March we are so lucky .i think of you all at times and wonder 

what is happening in your lives now . Take care to all beamers 🎀

[PaulS]

1852 glad to hear you too are clear. It is so hard isn't it? And all these tests must keep it all to the front of your mind. I found after the lump I had in March that I was thinking about it all the time again but when all was fine it did recede quite quickly again.
Yes I'm running a lot - 8-10k a day - to keep weight off., I eat very healthily and drink very little. My two lovely grandsons are a delight! The baby is growing fast - 10 weeks now! He is very good natured and giggles when we play with him. His big brother adores him which is great. Yes they keep me positive and determined to be fine! I don't want to miss anything. Hope you are all ok lovely ladies. P xx

[1852]

Hi paulS glad to hear your results were good sorry to hear about brother-in-law hope it gets sorted quickly . I have just been to muscular skeletal about frozen shoulder ?? Cause he as referred me for MRI so back to waiting again I had gastroscopy. Last week which showed hiatus hernia I do try to put cancer behind me but having tests just keeps bringing it back saying that i find I am thinking about it less generally my 2yearly tests were all fine . Are you still running ? How are grandchildren ? Mine keep me cheerful and put things into perspective . If you feel you can let us know how b--in-law gets on .lovely to hear from you . Hope all beamers ok and are getting good results take care DEN XX

[PaulS]

I was diagnosed at the beginning of June, surgery July and August ,and chemo Septermber onwards.  My 1st year check was last August, me 2nd year check was August and I have my appointment for the 3rd year check next August. So, for me it dates from the surgery which was my first treatment.

I have to stop reading about BC and stop thinking about it!

P xx

[Whitfield]

All you can do is support them PaulS.  This disease is affecting a lot of people.  I hope they get good results.

px

[Whitfield]

Hello PaulS,  Know exactly how you feel.  Hospital say from diagnosis but this can't be right can it?  I was diagnoisis August 14 but didn't start chemo until mid Sept.  I'm counting from September so end of next week is around two years for me.  I've got this rinning in the ears which is worrying me a it.  I've emailed the hospital as its not going away and like you say it's in your mind always.

Px 

[PaulS]

Just received result of two year check and no sign of disease. Very relieved on Friday but over the weekend couldn't stop thinking that I'll never really stop worrying about it! Do you think we'll ever really be at peace again? Sorry to be down when news has been good.
Lovely brother-in -law told last Monday that very likely he had either myeloma or tumour at top of his spine. Sister and he very distressed as they thought they had gone for results of MRI for back injury. Then they got call 9.00 pm Wednesday from consultant that it was neither if those cancers and they were going to investigate his kidneys. So stressful for them.
Take care lovely ladies. P xx

[PaulS]

I don't know - I had surgery first in July then August, and was told that for me the two years started from the August date. I think it is the beginning of active treatment so for you it would be the chemo - but I'd advise you to ask.

P xx

[Whitfield]

Thanks PaulS,  thing is no one can tell me when I reach the second year as I had chemo first, surgery then rads.  Is it start of treatment date, surgery date or end of treatment?

Pam x

[1852]

Always here for you PaulS and all beamers who want to stay in touch I don't talk about it much unfortunately with b-in-law waiting for results and friends hubby waiting for bladder op it's still very much around me take care everyone DEN

[PaulS]

No surprise you are fretting Pam as you have had to deal with a lot during this journey. Good we can continue to support each other.  I don't really talk about the BC at all at home or at work so I value the chance to do this with you ladies.

Have a lovely Wednesday.

P xx

[Whitfield]

Thanks PaulS much reassurance.  I also know the passing of the second year brings our stats down.  Just a bit of fretting but will be okay.

pam x

[PaulS]

Hi Pam,

I have that as well.  I went back in March for tests and it is called fat necrosis.  Apparently there is scar tissue from the surgery - and I has two surgeries - and then the radiotherapy literally melts the fat (which is different in the breast than elsewhere) amd then when the fat begins to solidifty again some attaches to the scar tissue and dies, hence the lump. I also have a little cyst in this lump which is apparently liquid fat.  I asked a lot of questions.  Other information:

- this is VERY VERY common!

- the cyst was not drained as it was so small and may solidify and disappear on its own. If they do decide to drain it this is done on the spot. No waiting for appointments.

- the cyst cannot become cancerous. It is not than kind of cyst.

- the lump may or may not disappear. It is not painful which is what they look out for. If it becomes painful I am to go back.

- the vast majority of women back in the clinic are there for side effects of the original treatment, just like this one.

- easy to say, but try not to worry.  Of the 7 women I meet up with for lunch/coffee who went through this with me, 6 of us have this!

- once we clear the second year we are on MUCH safer ground statistically.  So, I am trying to look forward to my August appointment rather than dreading it. Hard, I know, but I am trying.

Hope you are all OK ladies. Have a lovely Wednesday.

My gorgeous new grandson is thriving which is such a relief. P xx

[Whitfield]

PaulS,  same here on 24th August.  A bit worried as I have some dead fat cells that have caused a large lump where the tumour was.  So worried.  P x

[1852]

Funnily enough I have not really worried about mammogram think it might be that my lumps were not found on mammogram also think I have had so many other results to wait for they all blended together I am going to muscular skeletal in a fortnight got elbow X-Ray result yesterday that was n a d  so pain is either muscular or some damage to nerves just know it's bl--dy painful . How's your new addition doing bet he's growing .

how you doing pam when is your mammo think you said Aug as well didn't you 

[PaulS]

Brilliant news Den!! My appointment is 23 August and result two weeks later. Trying not to wind myself up! But feeling fine. Hope you are all ok lovely ladies. P xx

[1852]

Hi beamers hope you all ok I have just got n.a.d mammogram result that's another test ticked off good luck for yours  DEN🍷

[PaulS]

Den I'm sorry to hear that you are still having yo deal with so much - you must be desperate to be de- medicalised and get away from hospitals!!! Let us know how you get on. P xx

[1852]

Welcome to your new grandson P hoe you are getting lots of cuddles 🍼I have had my mammogram on remaining boob 3weeks ago was difficult because I am still having probs with left arm am having another X-Ray on elbow this time have appt to see muscular skeleton team in Aug hope they can help am having gastroscopy in Aug as well so still a lot of apps. But moving on .just hope d not have to have another mammogram til arm sorted avnt heard if ok yet hoping no news is good news .glad lump was nothing P it was sad to hear about jinny I remember her posting on forum at beginning .PAm hope you ok love to all DEN

[Whitfield]

Hi Pauls,  I'm looking forward now.  Sorry to hear you have same as me re dead cells bit I'm reassured by this as well.  My boob has a couple of large to dents now but hey I'm still here.

love to all.

px

[PaulS]

Hi Pam,

Yes, I too found a lump in March and was scanned and I was told it wasn't cancer but fat necrosis. Apparently the radiotherapy melts the fat then as it hardens it sticks to the scar tissue from the two opetations and then dies - hence necrosis. I had a small cyst in the middle but they decided not to drain it as it was so small.   Yes, it is a shock and sets us back and I suspect this will be the case for quite some time to come. The consultant told me that the women they see after treatment are there  - mainly - with problems arising from the treatment itself and that it seldom has anything to do with the original cancer.

It is a shock to hear that women on the forum die but we have to be strong and look ahead. When I was having chemo there was a lady who was at the end of her options and she was being given a hugely expensive drug. The hospital trust had to meet every three weeks when she was in and sign it off each time. It was so sad to watch.  But the nurse whispered to me - 'it is not you. Your cancer is different.' and I think that is what we have to hold on to. I am trying to accept that my breast will never feel the same as the other one because of all that has been done to it and aches and pains are and will continue to be the norm for that side of my body. But it is hard.

I am pleased that your hands are improving.

Hope that everyone else in our little group is doing Ok. Enjoy the sunshine lovely ladies.

P xx

[Whitfield]

Hello everyone,

nice to to hear we're all still here.  Like PaulS my next mammo is 24th August.  I've had a few scares recently as I had chemo, lump removal with node clearance then Rads my remaining breast has odeama and I found a lump which was US last week.  They tell me it's dead cell tissue.  This makes checking boobs harder but at least it's not cancer.  My hand operations were extreme,y painful but even they are now getting better.  Must not complain.

so all in all I'm ok.  I was in shock a few weeks ago when I heard Jinny passed away but I think she's was on the Triple Negative part of the forum so unsure if anyone hear knew her.  I remember her first posts when she was so scared and now she's gone.  That was hard to deal with emontionally even though we hadn't met.  It seemed to really being it home that this decease can be fatal for some.  Sent me in a tailspin for a while.

hoping we all carry on being well.

Pam x

[PaulS]

Sorry for typos - can't edit in mobile!

[PaulS]

Hi ladies,
I hope you are all doing well and settling into a more normal life. I'm ok though struggle not to panic with every pain and twinge! My next check is August 24 at the two year stage so hoping of course that everything is clear.
My lovely new grandson us now 3 weeks old and is just lovely. His big brother adores him which is you'd - no jealousy yet!
Keep in touch and let me know how you are doing. P xx

[1852]

Thanks p hope you ok how's work yes I think they know I am there for them both have supportive families which we know is good to have at times like this . Keep in touch it's good to hear how you are doing I often wonder how everyone is going on but respect their choice of not posting anymore .take care DEN

[PaulS]

SO pleased to hear that news Den. You must be relieved. I'm sorry to hear that friends and family are now ill but you will be a source of support to them I'm sure.
P xx

[1852]

Hi just to let you know scan ok and colonoscopy went ok today some polyps removed but dr said they were tiny and she wasn't particularly worried about them must admit I was a bit anxous today wish I could stop worrying as much I have mammogram in acouple of weeks and a appointment to see gastric surg regarding upper abdo and chest pain have never been to hospital as much . One of my very good friends hubby as been diagnosed with bladder cancer broth-in-law diagnosed with bowel cancer this week it never ends does it hope you all ok DEN

[PaulS]

That's hard I know but you just have to think that they are bring super careful with you and that tests rule things out! I think we almost expect bad news after the BC diagnosis and that's normal. When I found the lump in March I was almost surprised after all the tests and scans that it was not the cancer back. Try to be positive and know that we are all here for you. P xxx

[Whitfield]

Oh Den how awful.  Keep us posted.

pam x

[1852]

Hi beamers I am in for a stressful month I have been referred to muscular skeletal for arm problem , AV appt to see surg team regarding pain in upper abdo travelling into chest have yearly mammogram after colonoscopy and AV just received appt full body ct scan I am trying not to think about it all but as you are aware it's difficult . Hope everyone ok .

[1852]

Hi pam post went before I had finished glad to hear hand improving . It will be good when hubby takes over and you don't have to trek to hospital . Are you having a holiday this year ? It's really cold today hubby as just put heating on ❄️