63310members
332999posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Still getting my head round all this

17 REPLIES 17
Member

Re: Still getting my head round all this

Oh Maryjv, I am so with you here! Work is a big unknown here. So far my workplace have been amazing and very supportive. Ironically I changed team to have a better work life balance, 2 days after starting I was told my lump

was highly likely bc. I work in child protection for a local authority and my office requires travelling on the overground and the tube and my office is an open plan. When there is a bug around it usually impacts massively (this was never an issue for me, I rarely picked up bugs but aware this is about to change and i

do not want to compromise anything and put myself at risk). I love work, it’s a big part of my identity and I am of a view it is key to keep some

kind of normality however like you I worry about infections. Chemo might decide for me, I might be too tired to go. Friends and profs are divided about it - it is another big decision to make and it is hard. I am going to get the flu jab on Monday (first time ever) and buying some face masks. It is about making the decision that will compromise your recovery the  least . It’s a big dilemma and I have not resolved it yet - the answer might come up naturally in the end. (Obviously there is also the financial aspect). 
hope your work supports you 

 xxx

Member

Re: Still getting my head round all this

Thank you...just downloaded the book.   I am mentally ready for chemo but now worried about exposures to infections at work...I work in a dialysis clinic.  So many things to consider and worry about!

Member

Re: Still getting my head round all this

Thanks Shi, 

I have checked Patricia Prijatel on your advice and somehow had read about Shannon Doherty. 
will check the other ones too...

x

Shi Community Champion
Community Champion

Re: Still getting my head round all this

Sending ❤️ To you both, a good book that helped me was Patricia prijatel surviving triple negative breast cancer. Other tn’s Shannon Doherty, robin Roberts, joan lunden. Take it one step at a time, tn is treatable and there are tn survivors on here 👍💪👍💕💕✨✨Shi xx

Member

Re: Still getting my head round all this

Oh Maryjv

i am sorry for the news, I totally get it !  Today the consultant said to me « I know right now you can only hear TN but there are some positives and you need to remember » so I am holding onto this - that’s hopeful.

A referral has been sent for genetic testing but this might take a few months but no cardiac echo planned as far as I am aware (strangely today I wondered if they would check my heart). 
It takes some time to digest the info and process. You are definitely in the right place ... 

Very likely we are going to find ourselves on the Dec 19 Chemo group. 
x

Member

Re: Still getting my head round all this

Hello ladies, praying for everyone here🙏 We are warriors and fighters!!! I had my apt yesterday for results: triple negative bc, 1.8cm, will need chemo soon and then surgery tbd. Waiting for genetic testing results but hopeful since ct scans and bone scans look clear...until start of chemo I need cardiac echo, ct scans for lymph node check and lots of education. So glad I have somewhere to vent and share with people who understand what I am going through 🙏❤️

Member

Re: Still getting my head round all this

Hi lvp84

 

A bit of a dramatic morning as 30 minutes before my appointment with the oncologist I received a call from her secretary informing me that my appointment was cancelled as the team had decided I might benefit from a clinical trial. I got into a panic and requested to be seen regardless. They organised for me to be seen by the consultant who explained the miscommunication. Basically it was confirmed the CT scan and bone scan were clear, tumour shown a little bit bigger on MRI (21mm instead of 18mm) and 1 lymph node enlarged (armpit). He also confirmed the triple negative diagnostic. The team thought I might benefit from the Barbican clinical trial (immunotherapy) at Barts and will meet the oncologist leading the trial most likely next week. I am in two minds about the trial and need to know more about it before making an informed decision. That is another big decision to make... I am still none the wiser about my treatment plan but obviously chemo as a starter but no details about what chemo yet. So a little bit more waiting to do and still some uncertainty but getting there... 

Getting the markers fitted on Monday followed by flu jab... 

thanks for checking up on me 

Aurore xx

Member

Re: Still getting my head round all this

Let us know how it went? 

Member

Re: Still getting my head round all this

Hello, 

 

thank you all for your positive and encouraging replies, it is very helpful. I have my appointment in an hour with the oncologist so will have answers - the last 3 weeks have been tough! 

Maryjv, I hope your appointment went well - sending positive vibes 

aurore

Member

Re: Still getting my head round all this

Hi Aurore, feel like I am in your same boat...recently diagnosed with IDC, waiting for oncology visit tomorrow...have had breast MRI, ct scans and bone scans but no results yet.  Diagnosed 11/22 and I feel like since then I have had extreme lower back pain and shoulder pain...hoping and praying this is related to stress and anxiety but so much unknown!!

Community Champion

Re: Still getting my head round all this

Hi Aurora, You’ve had some lovely replies and I hope that’s made things a bit better, at least for a short while!  X

Shi Community Champion
Community Champion

Re: Still getting my head round all this

Aurora, if your diagnosis is tnbc, there are plenty of us tnbc survivors on here ❤️ Please get Patricia prijatel book surviving triple negative breast cancer, it helped me a lot. You will be better when you’ve met with onc and have a plan going forward. Just take it one day at a time and you will get through treatments, your team will have seen it all before. Md Anderson in USA are very good as is our nhs, so please don’t leave any support network here in UK unless you do feel better having your treatments in France. Keep 💪💕💕✨✨Shi xx

Member

Re: Still getting my head round all this

Aurore, it's good you are continuing to post on here as that at least gives you a little bit of an outlet and support. I think it is perfectly normal to feel frightened and I certainly was engulfed with fear.

Its also natural to look for solutions, but personally I'd agree it is better to stay away from Google and trust the medical experts looking after you, be that in UK or potentially in France. 

If you feel emotionally exhausted its time to eliminate all unneccessay stress and perhaps chat with your GP for something mild to take edge off the anxiety. 

I found thinking about practical things also helped, setting up the basics of someone to help with groceries and suchlike so there is a system in place if you feel unwell or too tired once treatment begins. Also stocking up on things to comfort me such as lovely soft pyjamas, lots of books etc. 

I know how hard it is, so here is a HUG.

Wonky x

 

 

Member

Re: Still getting my head round all this

Don’t let your mind run wild, take this in baby steps and I have had back and arm pain since my diagnoses couple of weeks ago. It’s anxiety and tensing up, so relax a bit if you can. Regarding France you can always get a second opinion when you get your pathology report and treatment plan? What sort of treatment / drugs do they do differently? I can tell you that I have a friend who’s wife was diagnosed and they are french and she is following treatment here (although no chemo for her, she was borderline)

 

I looked up the COC protocol, also reading Jane Mclellards book and finding it fascinating. Meet with them and see what they say after you have your results, as you move along this the pieces will start making more sense. Stay away from google and trust your doctors and yourself to get through this. IF you are TNBC know that all research efforts are pretty much in that direction, so lots of stuff going on to help. Deep breathes, strong morale. You got this 

Member

Re: Still getting my head round all this

Thank you Mai7 and Wonky for your responses. 

so many fears and worries 

- diagnostic of TNBC is terrifying me and I am so worried the already limited treatment will not work and/or cancer will spread quickly. I am so so upset and scared of this diagnostic 

- I am a French citizen and heard there are more treatments and drugs available in France. My life is here but shall I consider treatment in France. I am due to start chemo ASAP (1 or 2 weeks) 

- I am obviously scared of the chemo and not being able to hack it or for it to be effective. How do I prepare for this? 
-  reading about alternative options such as COC protocole, suppléments  and diet etc and it’s so overwhelming 

some days I feel I can do this other days i feel hopeless 

First meeting with oncologist on Friday and I am quite anxious about it as I will receive results of MRI and scan and we will discuss treatment plan.  I am preparing questions but it’s overwhelming. 

argh I feel exhausted 

Aurore2000

Community Champion

Re: Still getting my head round all this

Hi Aurore, glad to hear your CT scan is clear and I hope the bone scan is too.  If your lower back and rib pain is new since diagnosis then it’s probably caused by anxiety as you be holding yourself much more tense.  I had chest pains from anxiety when I was diagnosed.  It’s no fun at all.   Can you give a few examples of the “thousands of questions” you have?  Maybe if we just tease a couple out we can put them to rest!?  Sending hugs. Xx

Member

Re: Still getting my head round all this

Aurore2000.

I have never been keen on roller coasters, but they kind of go with the territory. Personally I felt the term "waiting for treatment is the hardest" was a bit of a platitude which doesn't really give justice to what goes through your head. 

You are covered by Disability Discrimination Act as regards work - maybe time to put work behind other things on your mind, or start a dialogue with your manager so they can work with you.

Best of luck; you seem very 'held together', but be kind to yourself. 

Member

Still getting my head round all this

Hello

 

i had just under 3 weeks of hell trying to get to accept the news that I have BC. This has been a hell of a ride and thinking it’s just the beginning makes me dizzy! I have never been one for rollercoaster .... 

anyway here I am 18 days later from being told my lump was U5 with 2 suspicious nodes. Since then, blood test, CT scan, Bone Scan and MRI. I am meeting the oncologist Friday. 

So far I know that my CT Scan did not show evidence of distant metastasis, blood results are good. I am oestrogen negative (bummer) and my HER 2 is borderline (so it’s been retested) but conscious i have a good chance to be TNBC.  I will start with chemo I imagine very soon.  Waiting for results for MRI and bone scan so quite worried.

i have started sleeping a bit more but have a 3:30 wake up time and have tried to keep going to work (but my productivity has been limited) and I have a ridiculous lower back pain and pain in a rib (since diagnostic).

I don’t know why I am writing or what to ask but I guess I am trying to adjust to this.

i have read people say things gets better when treatment is in place and gets started - I hope it’s true but that brings its own worries. 

I am worried that I will have to give up work as I work in a big open plan and bugs go round (the more I think about it the more I think it does not make sense to be in such an environment). 

I hope the oncologist will support an integrative approach or at least will be open to it. I hope I will be strong enough to question and challenge if necessary. 

I have thousands questions in my head that can’t be answered .... 

Thanks for reading 

 

Aurore