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Newly diagnosed and worrying

20 REPLIES 20
jomich50
Member

Re: Newly diagnosed and worrying

Wow that’s quick we are similar and I haven’t started quite yet and diagnosed nearly four weeks ago. Pre meet and picc next week so not long xx

jomich50
Member

Re: Newly diagnosed and worrying

Hi daisy /alikat

 

hope you doing ok

i think we ate similar I am triple negative but multi focal ( other tiny areas only found on mri) and auxiliary involvement and soon to start carbo / taxol then EC as yet don’t know cycles but will be over quite a few months / weeks.   Then Mx ( multi focal family history ) turned life upside down like all of us ready to just get going ! They have been Thorough cat scans ( all clear phew) and quick but seems forever now since diagnosed 30.9 but picc is next Monday and pre meet Thursday !  Xx

Shi
Community Champion
Community Champion

Re: boys jammers

Do you need me to ask you to stop posting your sales promos in a language you can understand? You obviously do not read English. 

Shi
Community Champion
Community Champion

Re: racing Swimsuit

You have already been asked once to stop posting about swimwear sales, you are clogging up the forum which people going through treatments or living with breast cancer turn to regularly. Do you understand.

Shi
Community Champion
Community Champion

Re: swimwear for girls

Stop posting about swimwear on these threads it’s not a sales forum.

Shi
Community Champion
Community Champion

Re: Newly diagnosed and worrying

Hi alicat I kept mine on all the time and just redid each 3 weeks between cycles, I just kept eye on everything to make sure no infections while on chemo 👍 I kept my nails short too, which helped 👍💕💕Shi xx

Ang3lf4ce
Member

Re: Newly diagnosed and worrying

Morning, glad yesterday went as well as you could have expected. I hope you are feeling ok this morning.

This black varnish thing is news to me.  I've sent my nurse an email to see what she thinks and get any tips. I'll report back when she replies.   I hope I'm not too late, although I was only thinking yesterday that my nails looked fairly healthy at the moment.

Have a good day.

x

alicat45
Member

Re: Newly diagnosed and worrying

Hi Shi,

Should I keep the nail polish on inbetween treatments or is it just important to have it on whilst having threatments?

Also, I'd heard that nail polish remover should be used as little as possible because it's not great for the nails - any truth in that?

Thanks for all advice xx

Shi
Community Champion
Community Champion

Re: Newly diagnosed and worrying

Hi alicat45, I painted my nails with black polish during chemo and kept them all 👍 toe nails took a bit of a battering though. Remember if you don’t feel right even with no temp, ring your rapid response ❤️Keep safe 👭💕💕Shi xx

alicat45
Member

Re: Newly diagnosed and worrying

Thank you for the good wishes Angelface.  As you said, it was a long day!  My nurse was lovely and I had a seat next to a window which overlooked a garden so the view helped calm me down.  I'm sure next week will feel easier now I've got one session done.  I was sent home with various tablets to see me through the next 6 days and I just have to hope that I won't be needing all of them but we'll see.  I painted my nails (I'd heard that black varnish can help protect them) although didn't try the cold cap.  Not only do I hate being cold but I really wanted to be in and out of the ward as quickly as possible.

I'm feeling a little calmer after today and one less unknown.  How are your stress levels? xx

Ang3lf4ce
Member

Re: Newly diagnosed and worrying

Hi Alicat45 and Daisy4762, looks like we are all at very similar stages in this process and it's good to know the treatment plan seems the same.

Alicat45 - good luck today, I know exactly how you feel as it's such an unknown, I was terrified but once at the unit everyone was so lovely and explained what was happening.  I had about an hour of premeds before the actual chemo so it all takes quite a long time.  I've also extended my day in the unit by using the cold cap. 

Sending you both positive thoughts at this really stressful time in our lives. 

x

alicat45
Member

Re: Newly diagnosed and worrying

Hello Ang3lf4ce,

Glad you found us!  It's nice not to feel so alone going through all this.  You're lucky that things have moved so quickly.  I was diagnosed before you and only have my first treatment today (which I'm very nervous about!).  Pleased to hear that your side effects have been manageable xx

Daisy4762
Member

Re: Newly diagnosed and worrying

Hello Ang3lf4ce, so sorry about you being in the same boat, but very glad to hear that you have no further spread and also that the side effects aren't too bad so far. Same here - triple neg in nodes but no further spread and same treatment plan. I felt a bit tired/funny tummy the first week, but have felt really good this week so maybe the Carboplatin had a bit more side effects? Can't believe that's me finishing cycle 1 this week already, time is flying in and I just cross my fingers that it's working. I'm awaiting my genetics results as well. We have no family history of BC, but we have had some other cancers so I'm not sure what to expect. Bit worried about having passed any wonky genes onto my child, but other than that I guess it may just influence surgical options? Not sure! Sending lots of hugs, glad we can support each other through this xx

Ang3lf4ce
Member

Re: Newly diagnosed and worrying

Hi, my first post here. I'm glad to have found you! The original post struck a chord with me.  I was diagnosed on 17 Sept and it was only in my first oncologist appointment that Triple Neg was mentioned. Also in nodes. I found it extremely hard to concentrate on the rest of the meeting once I heard that phrase.  Things have moved extremely fast - within 12 days of diagnosis I had all the tests and started chemo. The one thing I have clung on to was that my body scan didn't show anything had moved elsewhere.  My treatment is the same - 4 x cycles Carboplatin every 3 weeks with weekly Paclitaxel, then 4 x cycles of EC. Then surgery and radio. I've also sent off the genetic test and await results.  I have no family history so am keeping my fingers crossed.  I had my first chemo in my arm and have been bruised since!  This week I had a port fitted and second chemo (just Plaxitaxel).  3rd Platitaxel next Monday and that's 1 cycle crossed off the list.  So far I feel reasonably well.  Am able to go for a walk and work a few hours (I can work from home).  

Good luck to all of you who are going through the same thing.  It is good to connect with people in the same situation.

x

 

alicat45
Member

Re: Newly diagnosed and worrying

Thanks Evie xx

Evie-S
Community Champion

Re: Newly diagnosed and worrying

Hi alicat45 - you have already had some lovely helpful replies, but I didn’t want to read and not stop by without giving you a big hug at the very least. ?

You might want to look at the various chats about triple negative BC, or even start one with that specific heading if you have particular questions and want to get attention from those with TNBC.

When you do read don’t forget that by its very nature a forum like this tends to lean towards more negative stories, those who are well and getting on with life don’t always come back on here - that’s not a criticism, just a fact. I have one dear friend who was diagnosed with triple negative about 15 years ago and touch wood all is going well for her.

Do feel free to ask your team any questions you have, and from my experience teams tend to be very conservative so they wouldn’t have told you it was treatable if it isn’t - they don’t want to give false hope.

Your comment about anxiety could have been written by almost everyone on here. It’s very normal to feel as you do, not good but normal. I found the waiting the hardest, and I hope you will feel even a bit better once treatment starts and you feel like you are getting rid of it. You might want to look into counselling, or the Someone Like Me service on here, or even just continue chatting on here - whatever works best for you.

My very best wishes to you as you go forward. Evie xx

alicat45
Member

Re: Newly diagnosed and worrying

I think I might have applied for the trial you found you're not eligible for.  I'll wait and see what response I get.  My treatment plan is the same as yours (assuming I get on the trial otherwise my timings will change slightly but same drugs).  Suddenly I don't feel so alone 🙂

I've not told many people but what I really don't like is when they say "I'm so sorry that's awful".  Just makes me feel worse and on the outside of a life I used to know.

I hope you've made it through your first session ok this morning, at least you know what to expect from this part of the treatment now.  Hope your toddler is not too lively while you're recovering, although it sounds like his liveliness has helped you through a bit xxx

I'm liking your oncologist's tough love 😀 think I need to pull myself together too 

Daisy4762
Member

Re: Newly diagnosed and worrying

Sure, my treatment plan is 4 cycles of paclitaxel and carboplatin - with weekly paclitexel and the carbo added every 3rd week. Then 3 cycles of EC - that’s one dose every 3rd week. After that I’ll be assessed for surgery - lumpectomy has been discussed, but if I have a wonky gene we’ll discuss a double mastectomy. Also a full or partial node clearance depending on how that looks. Then rads and maybe more chemo too - I sort of lost track after that! I’m also on the Personalised Breast Cancer Programme at Cambridge where they’ve taken another sample for genome profiling or something - I’m not a scientist so I’m a bit sketchy on the details even though I do like to ask a million questions! There was another trial I was unfortunately not eligible for because they discovered my tumour is androgen positive which ruled me out of that one.

 

I know exactly what you mean about hiding away, I have hated telling people, I hate the sympathy and I hate that a lot of people treat me differently. At diagnosis, I could not stop shaking and could not really get out of bed but I have a toddler and to be honest he sort of forced me to get up when I would otherwise have just laid there! I also got some beta blockers from the gp which helped a wee bit with very bad days. To be honest the only thing that perked me up was my oncologist basically telling me to pull myself together 😆 Tough love. Hang in there xxxx

alicat45
Member

Re: Newly diagnosed and worrying

Hello again Daisy, thanks for the reply.  I've only had 1 counselling session and that was mainly the counsellor gathering background info so we haven't really started yet.  Next session is not till 8th October and by then my head will be in even more of a mess.  You're lucky to be talking to someone regularly.  I've been eating well although my interest in 'normal life' has taken a bit of a nose-dive.  I've been staying home a lot, hiding away I suppose apart from the hospital appointments (that sounds so gloomy, reading back!), but today I think I've got to make the effort to go out and see if that helps.  Fresh air normally does.  Yes, this is all so incredibly unfair and I keep wishing it away but I know I need to plough on through.  I think I'm still getting my head around it.

Good luck today; I hope all goes well over the next few days too xx

PS Can I ask what your treatment plan is?

Daisy4762
Member

Re: Newly diagnosed and worrying

hi alicat! I remember you from another thread where I was having a wobble. I am also triple neg and also with lymph nodes. From the moment I was told to prepare myself I thought “please at least let it not be in the nodes, and at least not triple neg”. So I did not take the diagnosis well! 😆 These past few weeks I have been for every scan under the sun and at one stage it was looking like it had spread to three other places. But it turned out those were random findings so here I am back at square 1, but now feeling much calmer because now I know it could have been worse if that makes sense? I fixated on triple neg from what I’d read online but actually when I thought about it, my team had never even mentioned it, just said this is curative treatment. So I’m trying to focus on that. I’m speaking to a counsellor which helps a lot, especially processing things like being told initially it was nothing to worry about... I have also had a genetic test done and waiting for results to inform surgical options. Sitting in the oncology suite rn waiting for my first chemo! I won’t pretend I’m happy and relaxed about it all the time, but the best thing my counsellor has said so far is to concentrate on things you have control over eg for me this is healthy eating, exercising, or whatever other hobbies you enjoy really. It is all so unfair and I’m still *beep* off about it, but we can beat this, the odds are honestly in our favour. Don’t Google stats - they’re all out of date, maybe especially for triple neg because the docs now know to treat it differently from other bc, with better results. Sending strength!xxxx

alicat45
Member

Newly diagnosed and worrying

I found out I had BC (grade 3) with spread to lymph nodes last month.  CT and bone scans came back clear so I was starting to feel more positive about things but then two days ago I had a meeting with the oncologist who told me I was triple negative.  That really knocked me back.  I'm due to start chemo the week after next followed by surgery and rads.  I'm going to get gene testing done too.  With the triple negative diagnosis all my hopes are on chemo, but I was told that in some (admittedly rare) cases that does not work.  From my first appointment when I was told that cancer was highly likely, I was told that this was treatable, but now everything feels like its unravelling.  There's so much uncertainty and I don't think I'll ever get peace of mind again.  How does everyone cope with this?

A xx