Newly diagnosed 2nd time around

[Michelle21]

Fingers crossed it’s straight to rads for you x

[Trowster]

Michelle

I was told at the diagnosis that rads would be in the plan, but until he has the histology of the tumour he won’t know if I will need chemo too, so it’s another waiting game until I see him in 12 days, but I haven’t had an appointment date, my discharge letter just says 12 days to be confirmed, so I think it might be a bit longer to allow for the Easter Holidays, so I’ve signed myself off work for this week then I will phone the doctor for a sick note until I know what’s happening, 

[Kitkat23]

Glad you are home safe and sound Trowster......that is some Sleep  😴  😴 you had! Enjoy your pasta dinner and you will be drinking that Baileys before you know it x x

[Michelle21]

Gosh Trowster sounds like it wasn’t plain sailing however so good you are home now and your husband is looking after you well. Good idea starting the exercises straight away, they really make a difference. 
I’m so pleased you are able to tick off a stage of this horrible ordeal, what’s next for you? Do you have rads to come or are you done?

Take things easy, enjoy being pampered and I hope you have a swift recovery.

[Trowster]

Hi Ladies, this is me just home, I think he went a bit OTT with the anaesthetic I was first on the list and went down at 9am but slept till 6 pm, then I had awful sickness even after being given extra anti sickness meds, I wasn’t the only lady this happened too, there was three of us kept in overnight, then this morning I spiked a temp of 39 but I told them this always happens to me and to my sister, but as he hadn’t written me up for any paracetamol the nurse had to phone another doctor to get me some, so I got my first pain meds at 9:30 this morning, the day nurse was quite shocked that none of us had been given pain meds,  my throat was so sore I’m not sure if it was from having the tube down my throat or all the wrenching, they have sent me home with paracetamol, ibuprofen and a mouth wash for my sore throat, but I must say the pain is only about a 1/2 it’s more discomfort than pain, but I have already started to do some exercises and it’s not too painful, he has told me to keep the dressing on till I go back to see him in about 12 days time, I had no drain and dissolvable stitches so I’m a happy bunny, I can shower with the dressing but try not to get them too wet, he phoned the ward this morning to check on us all when he heard how sick we had all been, so all in all I’m comfortable and happy to be home, bless the hubby has made me a lovely pasta meal for tonight, and he has used the left over chicken from Sunday to make some chicken n veg soup, I feel a bit redundant, but I have some lovely flowers from my niece in Scotland and a dear friend sent me a very large bottle of Baileys, I’m looking forward to sitting in the garden tomorrow if it’s as nice as today, 

[Kitkat23]

Hi Michelle....I was the same....I asked for a mastectomy after 3rd diagnosis ( already had a left mastectomy after 2nd diagnosis) .....but my surgeon said predicted outcomes for my cancer wouldn’t be any different regardless of which surgery I have, he also printed off lots of research papers for me to read which was very helpful and reassuring.  I know where you are coming from though, I said to my surgeon, I don’t want to be sat back here in front of you in years to come....and if a mastectomy could prevent that then I would push for it....but the reality is that mastectomy can’t prevent a recurrence.....my lump this time was 12mm .... so a reasonable size for a lumpectomy even though I have small breasts.   The only time I had a wobble about this was when I got my surgery results and cancer cells were found in 1 node ( they looked clear on the ultrasound) .... but my surgeon still insisted that the lumpectomy was the right choice and that radiotherapy to my breast and also lymph nodes would be the belt and braces approach.   I like my surgeon....but I also trust him having had him all 3 times....have you got the same surgeon this time?  Obviously you have a different cancer to me but as long as you are happy with the rationale given as to why you are being directed towards a lumpectomy....that’s the main thing....hope you’ve managed to enjoy some of the weekend....I’m just going to bed....I’m always tired since radiotherapy but I can’t sleep until around midnight To 2am....then I wake up shattered because I’ve not had enough sleep🙄..... I’m back in work now but able to work from home for the foreseeable future which has been a godsend.

Heres to a less stressful week for you x x

[Kitkat23]

Good luck 🍀 for tomorrow Trowster.....hope it goes well for you....let us know you ok....when you up to it x x 

[Michelle21]

You sound very prepared for your op Trowster. I had a lumpectomy last time and they are talking about it again this time but at the moment I feel like I want a dx masectomy. I had a pretty drain bag last time, it makes it feel slightly less medical.
Best of luck with it all, hopefully you will get clear margins.
Let me know how you get on xx

[Trowster]

Morning Michelle,

this time it’s a lumpectomy but I am concerned about them leaving some behind n having to go back in for a mastectomy, last time I just wanted the whole breast gone, but Mr Khatar is very nice and assures me the lumpectomy is all I need, I remember after all my ops the nurse saying most ladies get weepy 3 to 4 days after the op and they said it’s a mixture of the anaesthetic and a release of tension, and I can believe this because pre op are emotions are everywhere and we are so worried then we have the reality of what’s actually been done to our body, I had a lovely meal last night and even phoned a medical friend to ask if I would be ok having wine, I don’t drink often but really fancied a nice glass of chianti, so relieved when she said yes, well I really must pack my case today, can’t put it off any longer, my friend has made me a lovely drain bag just incase I have a drain fitted, 

[Michelle21]

Hi Trowster

Thanks for your kind words. I feel like I should get a grip I don’t remember crying this much last time although I probably did. 
Hopefully your covid test will be negative and you can go ahead with your op. Are you having another mastectomy or a lumpectomy? Either way I hope it goes well for you. Enjoy your chilling time this weekend xx

[Trowster]

Michelle I really feel for you we all have a horrible journey to travel, and we all go into that dark place on occasions we are only human after all even though we think we are superwomen for coping with this crap that is thrown at us, stay strong you have this and we have you, 

Kitkat, so sorry you have had such an awful journey I really hope things turn a corner very soon and better days lie ahead, 

i’m hoping To have a nice chilled lockdown weekend before I go in on Monday n hoping my Covid test is all ok, that was the worst thing so far, I nearly chucked up on the poor nurse, missing being out with my buddies on the bike this weekend but they have promised to tease me with photos of cake, Take care everyone, love n hugs 🥰💖🥰💖🥰

[Michelle21]

Hi Kitkat

Im so sorry to hear everything you have been through, it is a stark reminder of how brutal chemo is as a treatment. I hope you are able to make a full recovery in time and that BC never tears it’s ugly head again. 
I had managed to put it behind me a fair bit, but agree it was always bubbling close to the surface. 
Right now I feel so worried that the chemo isn’t going to work, I know I have to slow down and take it step by step but as you know it’s so hard. 
I must sound awful, I know everyone here is going through this but I just feel in such a dark place at the moment. Thanks for your messages they really do help xx

[Kitkat23]

Hi Michelle....my 3 diagnoses were all ER+ .....so I can understand it was a shock to find out this new diagnosis was triple neg and different from last time.......I imagine you are still reeling from all the info at your Onc appt....I remember thinking Ok it’s s**t but I will just take what they throw at me....I have since had a blood clot from the Picc line ( still self injecting fragmin every day🙄)....I have developed a ventricular ecoptic heartbeat from the EC chemo ( am under the care of cardiology) and have lost 2 stone ....so now have an unhealthy BMI...l but I would do it all the same again even if I knew what was to come....I guess you had managed to put some of that fear to bed over the last 3 years.....even though if you scratched the surface it was still there.....and now it’s all back so you wouldn’t be human if you weren’t scared....it’s been a massive week for you so well done you for getting through it....hope you manage a bit of a chill this weekend x x x 

[Michelle21]

I am back on the cancer rollercoaster. After the relief of the scan being clear I have now been told I am Triple Negative which has stunned me because I was Her2 last time and really hoping it was the same again.

There was so much info at the oncologist appt, testing for BRACA, heart test, pic line discussed, different type of chemo this time, longer and harder apparently. I don’t care about that as long as it works. 

I just wish I could stop feeling so scared.
 

[Michelle21]

Hi Kitkat

You wayhey away! I am massively relieved to be over that hurdle, keeping my fingers crossed for HER2 + now. 
I really just want to get on with treatment. I feel as though I’m wearing a suicide vest that could explode at any minute. At least once treatment starts you feel a bit more in control and it can start to kill off the cancer. 
I see the oncologist tomorrow so hope to know more then. xx

[Kitkat23]

Hi Michelle

i want to shout ‘wahey’ !! for you as long as you don’t think that a bit odd!.....but right at this moment it’s the best news😁......I remember messaging everyone to tell them the ‘good news’ after my scan results.....yes get your HER2 results then crack on.....onwards and upwards Michelle....have a good day today and keep in touch x x

[Michelle21]

My CT Scan is clear. I am so relieved. Like you said Kitkat I feel so lucky to ‘just’ have another primary cancer, and yes 9 lives does spring to mind! I’m keeping my fingers crossed it is Her2 +ve which would be the same as my first cancer. 

[Michelle21]

Hi Kitkat

Thanks for your message, it is comforting to hear from someone who has been where I am now. I will hopefully get CT results on Friday but will have to wait maybe another week or so for the HER2 result. 
I will try and search out some of those old threads are they in this section? 
Thanks again x

[Kitkat23]

I’m really sorry Michelle....it’s crap isn’t it......you are bound to be completely floored..... it feels like all that hard work of getting thru treatment last time was for nothing cos you are back in the same place....and it’s really hard to find that strength to get thru it all again at first.....and I know you need to get the scan results before you can focus on anything.....It’s amazing what we think of as ‘lucky’ isn’t it....I went from being devastated that I had another  diagnosis to feeling like a cat with 9 lives that it was another primary.  I found some comfort in some of the older threads about people who have had 2nd and 3 rd diagnoses like us then gone on to live cancer free lives.  I hope Friday comes round quickly for you....Did they say they would have the HER2 results by then?  I hope so...I will be thinking of you x x 

[Michelle21]

The BCN confirmed oestrogen -ve, still awaiting HER2 results. I was HER2 + last time and it has gone into my nodes which it had last time. 
no results for the CT scan until Friday when I have an appt with oncologist. I will be starting chemo in about 2 weeks. 

I can’t believe this is happening again. I feel completely floored and scared that I won’t be as lucky as last time. I really want to curl up and wake up when everything is back to normal again. It’s so hard. 

[Michelle21]

Hi Kit Kat

Thanks for your message. Scan went ok, I am thinking of calling the BC nurse this afternoon to see if she can give me any details. I’m praying for good news xx

[Kitkat23]

Hi Michelle

hope your scan went ok yesterday....really hope you get your results ASAP 🤞.... and news is good 🍀

thinking of you

[Michelle21]

Good luck with the Covid test on Friday Trowster, I’m sure it will be fine if you don’t get too close to anyone. 
I had my CT Scan this morning, one step closer to knowing. I have an appt with the consultant on Thursday so not sure if I’ll hear anything before then. The BC nurse did say she would call Tuesday, but I’m not sure if she is still going to. I’m not sure if that’s better or worse. I want to know the results but only if they are good. 

[Gygi]

Hi Michelle, I just read your posts and am sending you lots of hugs and more. Will be thinking of you Monday. Take care Gigi x

[Trowster]

I was told to have my test 72 hrs before going into hospital so I’m going to book it for Friday, then stay indoors till I leave for hospital, just got to hope n pray it’s negative or the op would be pushed back I suppose, 

[Michelle21]

Yes I’ve been trying to keep myself busy, been for a walk and done some gardening, 100 miles is impressive. I’m more of a runner than a rider.  When do you have your covid test? 
I suppose I don’t have too long to wait now but I am just so scared about the results. Still like you say things will be a bit better once I have a plan and know what I’m dealing with. 

[Trowster]

y

Michelle21 you are so right the waiting is the worst, once you know what your dealing with you can set plans in action, it’s no easier but you at least have some answers, try and take your mind off it, not easy I know, I’ve been getting out on my bike this week to just enjoy the outdoors, I’ve managed 100 miles so far, but once I’ve had my Covid test I’m assuming I will need to isolate until I go into hospital, n then the brain will go into overdrive, just want to go asleep n wake up when it’s all over, 

[Michelle21]

Waiting for tests and results is like torture. Time goes so slowly and my mind is doing somersaults. One second I’m thinking it will be ok the next I’m thinking of my funeral. I’m trying so hard not to worry because what will be will be but it’s difficult 

[Michelle21]

Thanks for your message Kitkat, I do wonder can I be lucky again to ‘just’ have primary. It feels crazy just thinking that! 
Someone on here once said it doesn’t matter if there’s only a 1% chance if you are that one which is so true. You must feel better now you are through the treatment, have you had a mastectomy this time around or lumpectomy? Did you want to have a mastectomy? I feel like I just want rid of them both.  I didn’t feel a lump either time. I mentioned that to the radiographer and she said she could only just feel it and that was knowing what she was looking for and where, which made me feel a bit better. I had felt so stupid not noticing the first time until it was painful. 

I don’t remember the big girl pants saying but funnily enough Kip quoted the same thing to me this morning! Yes she was a community champion and she is very supportive. I guess that’s the good thing about going through it again I don’t feel quite so alone. Thanks again for your support xx

Trowster Sorry to hear your results showed cancer but good news you have been booked in for an op soon. Good luck I hope it all runs smoothly for you. Xx

[Trowster]

Yes, I have now had my results and there were abnormal cells in the breast and node biopsies, Doc has booked me in for a lumpectomy and node clearance for the 29th March and he says it should be done as a day case, I know it’s bad news but I feel it doesn’t seem as bad as last time, that was a full mastectomy, and it’s a separate cancer, I’m greedy with chocolate n cake but never had a desire to be greedy to want seconds of Breast cancer, but it is what it is, so here we go again n let’s kick it in the butt, 

[Kitkat23]

Hi Michelle!

i too had those ‘conversations’ 🙄.... think it’s our way of ‘preparing’ Ourselves for potential worse case scenario news.... I had my CT scan on a Friday and got my results on the following Wednesday and it was like time stood still for 5 days..... so I get where you’re at..... I think 2nd ( or 3rd time!) round....it’s like .... well, I can’t possibly be lucky 🍀 enough for it to be ‘just’ primary cancer this time...... anyway you not even in that position yet..... so put those Parrots 🦜🦜 on your shoulders back in their cages and don’t listen to them pecking at your head filling it full of doom and gloom 😁.  

I remember Kip! She ended up a community champion I think....always there with a kind and helpful post! 

first time ( 2012 ) I had DCIS non invasive 4mm ER+ ..... so had WLE and that was it.... told I had a 2% chance of recurrence...... 5 years later recurrence of DCIS in same breast 37mm this time but ER+ again..... so Mastectomy.   Then 2 years ( 2020)  mammo picked up 12mm ER+ IDC in opposite breast...... so always ER+ and HER2-  ...... this time 1 node involved so had chemo and rads.  What is scary is I never once felt a lump.

Do you remember around 2018 there was a lady who always used to send a picture of ‘big girl pants’ Like lacy bloomers!.....with pockets in, to those ladies who were having tests and results!! Well I will jump in those pockets for you on Monday! ..... try to have a good weekend doing nice stuff ( as much as we can in lockdown!) 

x x 

[Michelle21]

Hi Kitkat, yes your name is familiar too. I was in the April 2018 chemo thread and had surgery in August but I dipped in and out of a lot of threads around that time. I still keep in contact with Kip and Phoenix  if you remember them? 

I am so sorry to hear you have been through this 3 times, it is frustrating no one can say what causes this and why it keeps happening to some of us. Has the cancer been different each time and was that why you had chemo this time? 

You were lucky with the mamo during covid. Mine was cancelled so I booked a private one which I am so pleased about now because it means we know it has appeared in the last twelve months and yes like you mine is in the other breast this time. 

I feel similar to you as long as I can get through the CT scan with nothing showing elsewhere I think I can do this, even if I have to have chemo again. It’s just the CT scan that is worrying the hell out of me. I have conversations in my head where they are telling me it has spread and i have them saying it hasn’t depending on how I’m feeling. Thankfully it is all happening quickly so the not knowing won’t last too long. 

It sounds like you are at the end of treatment now and I really hope that is the last time for you.

Lovely to hear from you

michelle 

[Kitkat23]

Hi Michelle
 I remember your name from back in 2018 ..... I was part of the April 2018 Surgery thread..... so I’m guessing you had your surgery around the same time.

Sorry you back here again....but nothing is confirmed yet so there’s still a chance it’s nothing serious...,but I know that won’t stop you worrying like crazy all weekend.

I have just had treatment for my 3rd BC .... surgery, chemo, rads and now hormone therapy ( after diagnosis in May 2020) ..... this time was the other breast.... was that the same for you? It was picked up during annual mammogram ( which thank the Lordy my hospital didn’t cancel due to Covid..... as many hospital trusts did cancel) .

The way I’m looking at it this time is that I actually feel ‘lucky’ that it is another primary cancer and can be got rid of..... it’s crap ...... and I wouldn’t wish it on anyone but it is what it is and I can’t change that....but it’s hard to stay positive all the time so I don’t even try.   I seemed to bounce back after the first 2 times as I didn’t have chemo but this time round has taken more out of me physically.

I will think of you on Monday and hope that you get your results quickly.

take good care Michelle 

[Michelle21]

Sorry to hear about your mammogram Trowster, have you had the biopsy result yet? It’s strangely comforting to hear of others who are having the same experience. It makes it less isolating, thanks for your reply and good luck with everything xx

[Trowster]

good luck with your results, try not to worry until you know what’s happening, but I know that’s not easy, I had Mastectomy in 2008 chemo radio n recon, had my routine mammogram 2 weeks ago and it has shown up something, so I know exactly how your feeling, sending love n healing thoughts, 

[Michelle21]

I had BC in March 2018, Her2, had chemo, surgery and rads. I was just starting to get back to myself and feel positive about the future when bam! Went for my annual mammo and they called me to tell me they’d found something. 
I have a CT scan on Monday which I am terrified about them finding something awful. I had a complete response to chemo first time around and had felt positive about that but now I am so scared. 
I used this forum in 2018 and there was  so much support here. Any advice much appreciated. 
Hopefully I will know more next week.