Dcis

Hello biddygirl.

Things have advanced a lot in 11 years I would think but here is my story..

In 2010 i was diagnosed with DCIS...high grade....aged 50...had a mastectomy And told I would be seen by consultant 5 weeks after the surgery and then ? Radiotherapy approx 8 weeks from surgery, the consultant said it had almost infiltrated but that they had removed good margins..I returned for my post up visit and he told me I no longer needed radiotherapy......so off I went thinking I had a v lucky escape (mammogram picked up left breast lump...4.5 cms

So for 11 years I checked under my axilla both sides, had my mammogram as required for the remaining breast all ok.

July this year after battling to lose 2 stone in a healthy way over 2 years and at 5 foot 1 and 8 stone I felt great and at over 60 was delighted I'd ate proper good healthy meals and enjoyed my walks with my husband who also cast almost 2 stone off.

I iwas skinnier and while running my fingers down my left side approx centre of left side of mastectomy I could feel a Clam like lump stuck tight  and that's the start of my journey yet again...a Recurrence ...so my c had not all been removed last time...Invasive Ductal Carcinoma this time 7mm and in the lymph nodes x 3..total axillary clearance beg sept, seroma of breast so radiotherapy can't go ahead..see oncologist 15th Oct to reassess again as radiotherapy scan done 4th Oct but not successful as too much fluid, am on ananastrozole  as her 2 neg....also to have chemotherapy.

I think back now and wonder if I had have had those radiotherapy treatments in 2010.....would I be here now on this much  tougher very painful journey at almost 61...im glad to be alive and very thankful to have discovered the lump and now removed and v lucky to have had the her 2 neg result as it was growing very slowly and silently and I felt well....no symptoms for...11 years....

Consultants made the decisions probably with the input of the Multidisciplinary Team at that time...treatments etc have changed and much more research.  .....

im on my journey yet again and taking one Minute  at a time. Had hot flushes for 15 yrs as couldn't take hrt patches  after mastectomy in 2010...hot flushes were baddies........left me wrecked and I was working full time as a nurse......now anastrozoles side affects are hot flushes...lol....internal heating for the winter....only rid of the hot flushes 6 months ago....ha

 Biddygirl your MDT will make that decision and you can discuss that with them as you are very important in the decision-making process.

Good Luck.

Take care.

Katrina xx

Katrina21....hello. I'm sorry to read you've had to begin again with treatments but thought you might find the last convetsation I had with my surgeon as he signed me off this year, interesting.

He told me to be vigilant.....which thank goodness you have been....because he said some recent research appears to be showing that whatever caused the first cancer may cause a second, totally unrelated cancer later on. He wasn't referring to secondaries which after 11 years yours probably wasn't. The research is still in progress but because of the successful treatments being developed women who had BC are living and therefore there are a number of people like yourself who are developing a second but new cancer 10, 12, 20 years on. Nothing that you did or didn't do first time around would stop it if something in your bodies make up allows cancer to develop. That is what the research is trying to investigate.

So try not to feel guilty that you didn't have radiotherapy last time and be glad that by checking yourself you have found this cancer too.

As I say, it's early research but it is interesting. There are certainly a number of posters on these threads who are going through BC again but don't have cancer elsewhere which would suggest some truth in the research.

Take care. I hope all goes well for you. My own BC....tnbc....was six years ago.

Hi Katrina. 

Wow, your story is quite a journey. I've heard so many different outcomes. I'm quite confused. Some say the surgeon doesn't tell you until after the surgery. My surgeon did say, three weeks of radiotherapy. I had mine done at a private hospital, through the NHS, they didn't tell me very much, just to wait until Monday, when the NHS nurse will call me. 

I'm 61 and have been okay with the menopause, had my last period a year ago. Not many symptoms, apart from insomnia and exhaustion. 

I wish you well going forward, sending hugs..xx 

Hi biddygirl

I have my surgery for low grade dcis on Tuesday.  I was told by the consultant I might not need radiotherapy afterwards but I think they like to see the results of the surgery before a final decision is made.  How was your surgery on Friday - bit scared about mine ....

Thanks lancomtekp.

My C was confirmed as a Recurrence by my consultant....I've read that it just takes 1 cell....a few cells can be left behind at the margins etc at time of surgery, I thought it must be a new c after almost 11 years ......but it wasnt, it's not a new cancer just a progression of what was left behind, I did think at the time in 2010 that I would rather have had the radiotherapy and was surprised not to have got it as 4.5cms removed by mastectomy after failed lumpectomy and bigger than they thought and description of dcis was "disease present at the inferior and superior margins" 

It has made me question everything now because I've been here before and the oncologist said we need to be totally rid of This Nasty thing or it will come back!....I agree.

Take care and thank you.

Being vigilant is important but only I had lost the 28lbs I would not have felt anything through my fat....no symptoms yet had worked it's way silently in to my nodes.

I'm ready for the rest of my journey and will try to cope with the seroma, I have a lovely oncologist and radiologists which is great but I ask a lot more questions now because of my history of recurrence.

Great biddygirl, 

Good luck and I will be following your journey.

Katrina.

Hi Foxy16 .My surgery was fine. Not too much pain afterwards. I'm a bit in limbo. Just separated from my husband, selling house and builders have been in for the last few weeks, which has meant I'veeen staying in various places. Just want some normality back. The timing has been awful. Good luck for Tuesday..I'll be thinking of you and let me know how things go..

Hi Sounds like you are very busy - so thanks for the reply!  Great to know your surgery was fine and thanks for the good wishes.  Sending you lots of luck that you won’t need that radiotherapy x

Hi Katrina

I am having acupuncture for my hot flushes caused by letrozole I was referred by my oncologist.I’ve had 4 out of 6 sessions at Royal Marsden and it’s amazing.

I would have night sweats and have to change my pjs and probably 4 to 6 during the day.....now the night sweats have gone and I get one or two flushes a day.It’s a huge improvement for me 

Its 28 needles every time but you don’t feel it at all ....and there is no blood! They don’t needle your arm on your affected side but everywhere else 

Its worth asking if they do it at your hospital.

Hello Exraygirl.

Thank you, Great you are finding the acupuncture is helping you.

My hot flushes are not bad compared to what I had for 15 years so that for me is positive and they are not as severe so I am blessed..only started anastrazole on 4th oct, that is good advice and I will see if they get unmanageable.

I am very confused about treatment..had total axillary clearance beg oct, v painful experience, coping good, along with a very swollen painful seroma holding up my radiotherapy, it's v swollen filling half of my breast and trapped by my 2010 mastectomy scar, pushing up in to my axillary and around my back,v slightly pitting oedema on left side from ribs up to axilla, no more space for expansion and it's stretching the skin all around as pressure high, so tight...so up arm but I keep it up as best as possible..Like several bullfrogs expanded throats..ha

Below my breast is mottled pink and purple right down to my waist line..like I've been kicked black n blue, also missing breast area now swollen n purple pink also, v painful n hard breast area compacted with fluid and under arm, no temperature, doesn't feel any warmer than rest of body(was nurse in past) feel ok except pressure preventing me breathing properly, backpain aching, cannot get full chest expansion as pain left chest area catches me and prevents this.

Saw oncologist 2 weeks ago, then 3 days later back to get marked out, my seroma was only slightly less congested when she saw me 3 days prior and radiologists questioned on that day of breath practice if oncologist okd me for marking out , then that day of marking out I failed breath hold as arm so painful n less range with bulging tight fluid, and breath hold causing pain in chest arm area,

then on marking out the 3 days after radiologist. questioned me if oncologist okd the drawing out as they thought too much fluid, they asked another oncologist to look and she questioned if fluid had increased, I said just the same from Friday to monday, they drew me out, then x-ray rang few days ago, that planning radiotherapy scan was unsucessful, unclear so appoint made going back this friday to radiotherapy dept to see oncologist again? Another planning appoint, I know there's too much fluid...

Meanwhile I've been in touch to tell bcn and she sent oncologist message but no reply that fluid increased n painful, told to ring bcn at any time, no point, they can't do anything until they get confirmation from oncologist..I'm taking cocodomal and in pain night n day, don't want to ring radiotherapy to tell them as I'm being seen by oncologist on friday(original oncologist)....I'm just doing my best to cope with all, don't know if calling radiotherapy will make a difference...suggested fluid may need to be drained or may be left to see if reabsorbs, v difficult for them and I'm too scared to bother them by letting them know how things are, they may well say see your gp, I will just keep going with the swelling, pain n mottled pink purple mottled large areas..I feel v alone and like pass the parcel so I'm shutting up...Friday 3 days away...

Bcn told me all c removed a few days ago and it's just a 'bib and braces' job!!!never heard that expression, then went on to say I know your keen to get this all over with...no I'm not, but when I am told your c has all been  removed.....that's what I was told in 2010....and this is classed as a 'Recurrence '....how does anyone know if c had left the lymph nodes this time and moving around now as bone and cat scans over a month ago....no one knows.

I felt bcn made v light of this situation and complicated with the seroma the hold up with radiotherapy, oncologist described it as a nasty thing and she' needs to get rid of it as it was there a long time and will try and come back!  and also the mention of chemotherapy, signed consent form for 10 days radiotherapy....would chemotherapy be on same consent form.

I'm going to ask more questions on Friday as think oncologist distracted waiting on fish result while I waited for 3 hrs in waiting room as 1 month after surgery n she needed the result then started me on anastrozole, fish test  turned out to be her negative.I

I think I'm oestrogen receptive but deep down in mixed up

Thanks for your kindness to me and for caring, I'm a bit lost...

Katrina.

Exc iPad mistakes.lol

Read your story, Thank you for helping me and so many others , you were a manager of a radiotherapy unit, what a great job you did.

Hope you are keeping very well.xxx