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Newly diagnosed September 2020

14 REPLIES 14
Member

Re: Newly diagnosed September 2020

Hi 

I saw your post and wanted to try and reassure you about the "multifocal" element.  I was diagnosed with TNBC in May 2019.  They didn't actually know there was cancer there until the lumpectomy - they thought it was DCIS alone (despite having stereo biopsies which all clearly missed the cancer) so it was a surprise when there was a 12mm lump and apparently a 1mm one next to it.  To be honest they pretty much dismissed it during discussion - it was too small to test so they assumed it was TN and treated me as though it was.  The surgeon was very clear that it had all be removed, the margins were very clear and there were no nodes involved (I had to go back to theatre for an SNB) so I hadn't really thought about it again and no one has said anything.  I don't know if this helps but good luck with the appointments and treatment - you will get great support on the chemo section of this website and it will be over before you know. xx

Member

Re: Newly diagnosed September 2020

Hello everyone

I hope everyone is moving forward and okay.    I have my first oncologist appointment tomorrow so should get treatment plan, they will hate me as I  have typed out a list of questions as my other GP meetings I have felt quite rushed and no time to process.  So I put my work hat on and did what I would do there go prepared!  Plus having to do on own due to covid not great, may ask to put hubbie on speaker but probably not worth it??    I have to get dental work next week before chemo and the flu jab tomorrow so imagine after tomorrow will be all the pre chemo appointments, what a great half term !

I am starting to get quite fearful about it all and the outlook and I must stop reading about TNBC I have started a really good book about it that is helping.   I just keep looking at my two children and hoping for the best.  I know it may be multi focal now the other one is a like a dot only came out in MRI and the original beast is 20mm and I think one node affected but I realise could be more.   Also all the stuff about % of KI 67 confuses me.

I will move to the chemo board once I know so hopefully see you on there if that is your first treatment like me....  I hope everyone is doing ok and feeling positive.. xx

Member

Re: Newly diagnosed September 2020

No, I hate being cold so I didn't ask about it.  I've not actually seen anyone using it so I don't know whether the hospital offers it or not.  Both sessions I've been to have been running over an hour late so I'm not sure the staff have enough time to be adding in even more time for the cold cap.

It's natural to be apprehensive as this is so different from the norm.  I've always avoided putting chemicals into my body so this goes against all that.  Plus there are the unknown side effects.  There's a lot to worry about!  I just hope I don't end up having to go back to the hospital one evening / weekend with a problem (fears of covid).  I also worry that the treatment may not work of course.  I just pray that it will.  Basically I'm a worrier and I find uncertainty hard to handle.  I find it hard to be blindly positive about things even though I know that would make life easier and worrying does not help.  If you find out how to do it, let me know xx

Member

Re: Newly diagnosed September 2020

Had another biopsy mammogram ultrasound today as MRI saw something that concerned them, likely another tumour next door, although is a pin /dot size.. think that would mean multi focal BC and Triple negative!  I am trying to stick with positive thoughts hard at times, got treatment plan consent / meeting next Tuesday.     

Hope your treatment went ok, very apprehensive about it all, same with needles but getting used to this proddding around now.   Are you using the cold cap?

Member

Re: Newly diagnosed September 2020

Hi Jo,

Glad you have got all your test results back now and can get on with the next stage.  I've just started treatment myself (last Thursday) and am learning as I go along.  Never thought I'd be able to do needles, who knew ... and just ordered myself some new headwear.

Take care xx

Member

Re: Newly diagnosed September 2020

Thank you Daisy wow hats off to you all this with a little one as well and you sound like you are coping well.

 

i am a worrier so the tests scans waiting was awful we actually celebrated with a glass of wine from hospital ( it was also husbands birthday) as was told rest of body clear so only right and nodes swollen no idea how many affected.  

A lot to take in and I am not great with needles etc but got used to all this prodding and two c sections I realised I was stronger than thought 

 

everyone on here is amazing here’s to successful treatment for all and putting the c word behind us ☺️ Jo x

Member

Re: Newly diagnosed September 2020

Thank you so much for replying 

I think covid also adds extra dimension but getting used to doing this all on my own already and sometimes it’s better ! My kids are 11 and 7 and have a great Hubbie family friends work so half way there and after a year of cancellations galore for my 50th next summer is focus good holiday and maybe if up to it a party will see.  This forum really helps thank you xx

Member

Re: Newly diagnosed September 2020

Just wanted to say hello, Jo. I am also team triple neg, I was diagnosed in August, 27mm mass in right breast and also in nodes but otherwise contained. I did not take the diagnosis very well! But here I am after my first cycle of chemo, feeling relatively calm and positive (most of the time...) and physically very well. I don’t know if anything could be worse than those initial days of not knowing and all the further tests (I had ultrasound, mammo, mri, ct and pet as each one kept showing up something worrying until thank goodness the pet took us back full circle! That really put things into perspective I think.) The side effects of the chemo have been kind to me so far, as I hope they will be for you. I have a son, only 16 months so not aware of what’s going on like yours will be. He keeps me going although I feel guilty for the stress that’s in our lives now (stupid mum guilt!). I’m 38, also been for genetic testing and awaiting the results of that. Sending lots of love and best of luck for your treatment xx

Member

Re: Newly diagnosed September 2020

Hi Jo

Every cancer is different and you often get the ‘same’ breast cancer (on paper) getting a different treatment. Different MDTs will decide on different ways forward. You will also find that many hospitals no longer use ‘stages.’ Mine is a regional centre of excellence - they told me the grade of each tumour but said they didn't work with stages.

Almost everyone fears chemo. The actual experience is a huge surprise - a bunch of socially-distanced patients wired up to bleeping machines, chatting over cheese and pickle sandwiches and tea from the trolley! And if you are having the treatment every 3 weeks, you’ll have a steroid boost for about 5 days that can work wonders. They have dealing with most of the side effects down to a fine art and every treatment begins with half an hour of everything you need to avoid nausea, reactions etc. It’s moved so far away from the appalling public image, believe me. You’ll complain more about boredom than nausea! You’re also sent home with a goody bag/first aid kit to help if you feel nauseous etc.

All you have to do is look after yourself (especially with two youngsters), be super-vigilant about avoiding any kind of infection and get a flattering buzzcut (I went for a no 6) In week 2 or 3 before you start losing hair. That way you aren’t upset by long strands slipping out and you can decide when you need to turn to beanies (2 cashmere beanies took me through it all) or start wearing a wig. You might decide to cold-cap but that will add several hours to your treatment time so you have to decide if it’s worth it.

I’ve had emetophobia (obsessive fear of vomiting) since I was 5 and I have panic disorder. You can imagine what chemo meant to me. My team bent over backwards to help me and I just left them to it. It’s not pleasant but it’s completely manageable and worth every drop. So, good luck and let’s hope the side effects are minimal xx

Member

Re: Newly diagnosed September 2020

Thanks for the advice, sounds like we have very similar prognosis.   

I was told today chemo every 3 weeks, but that could change as that was the nurse but certainly before surgery.     I feel so much better now  today had news not spread than nodes, who would have thought there is good news in breast cancer!  Yes I will be same, scared of chemo and the effects and loss connected to that but know will be doing its job and then move to the surgery.   Meeting oncologist next and guessing the team will then explain chemo etc they said before end of month anyway.

Good luck x

Member

Re: Newly diagnosed September 2020

Hi Jo, I am sorry you find yourself here.  I am new (this week) here and have too been diagnosed TNBC, have now had my first 2 chemo sessions (weekly for 12 weeks, then every other week for 8 weeks, eek!) and next one on Monday.  My lump is 3cm and also node involvement.  Body scan showed it hadn't spread which was fab news. I'm waiting for the genetic tests (although no known family history) which I guess will steer the surgery options in a few months time.

The unknown is the worst bit of all of this I have found.  I am much calmer since starting the treatment and thankfully so far have felt pretty ok.  Although I'm realistic enough to know that I wont always feel like this.

Let's hope you get a date for your chemo quickly. 

x

Community Champion

Re: Newly diagnosed September 2020

Hi Jo - I typed you a welcome message but it has vanished (or I am losing the plot!), so I don’t know whether it will reappear and this will be a repeat...... but a big welcome from me too. 

I think I’ve seen other posts you have made so you probably know your way around the forum by now, but please ask if you have any questions about treatment or services offered on here. For example you may be interested in the “Someone like Me” service where you get paired up with someone who had similar diagnosis for additional support.

Re TNBC, I have a friend who had TN about 14/15 years ago and is doing very well. Statistics can be meaningless - they don’t take into account your unique make up or circumstances.

Very best wishes, Evie xx

Member

Re: Newly diagnosed September 2020

Thank you for your advice much appreciated.   Yes I have now stuck to here Macmillian, and my consultant said today any reoccurence in TNBC is 12% which is much lower than suggests on google!  I think I googled more at start as had no clue what was going on, and with all the other scans was freaking out, but been remarkably calm so far, even with the added hinderance of COVID.  My husband couldn't come in with me today.  I have lots of questions for the nurse as it was so quick so gave them a ring.    Plus they didn't give me the stage!   I know it is grade 3 but will ask more when back for biopsy next week.

 

Yes I think I am more worried re: chemo  /hair loss than the operation but time will tell.

End of day at least plan in place now, and it could be worse but sure my emotions will be all over the place like the last few weeks of waiting for full diagnosis.

Will join the Chemo group good idea, think it will be end October by time the next bits happen.

x

Member

Re: Newly diagnosed September 2020

Hi Jo

Welcome to the forums. You have found yourself, I hope, in a warm, friendly and helpful place, definitely preferable to Google, which is not recommended. Steer clear at your emotional peril!

I’m pleased for you that there is no spread and, although a mastectomy sounds terrifying, the reality isn’t as bad as we imagine. It just requires a shift in thinking. I wish you luck with your chemo, which will start very soon, and hope you react well to it. Remember, there are no rules now - everyone is different and you may be almost as fine as usual or completely wiped out - or somewhere between the extremes. Whatever happens, it’s right for you. Consider joinIng your chemo starters group (for whatever month) on here. It will be a great support for you. 

One piece of advice for chemo - have two thermometers. They aren’t foolproof and you’ll need to be sure your readings are accurate (voice of experience ere lol). I wish you all the best x

Member

Newly diagnosed September 2020

Hi All

I am Jo, just turned 50 a few weeks back and my first mammogram detected calcifications and the recall after biopsies found lump in my right breast 20mm, grade 3 and affected nodes.      Today I went to my next appointment after bloods, MRI and CT petrified and actually came out relieved because it has not spread any further.  There is also scatters of paint on the right one (left one clear) which having another biopsy next week for peace of mind but mainly to take the decision as they recommend a masectomy.  Also was told today am triple negative so chemo is first stage.  So it is not good news but could be worse I guess as worrying all week that it was worse.      Scared of next few months will be bring, I have two children 7 and 11.  Also have gentic test as runs in family.

Just thought I would welcome myself officially to this group as wasn't sure until today.

 

Jo x