Diagnosed this week and very frightened

[absolutelyannie]

I was diagnosed in November and agree that the waiting around before treatment starts is a truly traumatic and worrying time.  My nurse told me it would get better once treatment started and it did.  Like you I have invasive ductal cancer and am having chemo before surgery.  I started chemo on 5th December and am on EC treatment.  I had ultrasound after two sessions and was relieved to hear that the chemo is working.  Thoroughly agree that the time of year did not help me either. I did not want to spoil anyones Christmas but mine was well and truly out the window. 

Stay positive and once you have started you will feel a bit better.  

Just a note anyone else start their chemo in December 2018

[Val Beach]

Am I being paranoid ? Had one session of chemo 8 days ago , had period four days after ( not had one for 4 months ) and I’ve convinced myself the lump is getting bigger . It was sore and large before chemo but I dreamt last night it’s growing and spreading everywhere 😬 ( chemo first , then lumpectomy, lymph nodes clear ) I’m hoping it’s hormones , and the lump will change size , feel etc as it’s being treated ?

[JoannaS]

Hi Val. I just wanted to say that my Mum is in a very similar position to you. She had a mammogram recall and was diagnosed with a large tumour last week. They did biopsies of that and also some lymph nodes. These tests are positive but we don’t know the extent of lymph involvement. Last week they said definite mastectomy and maybe chemo/radiotherapy etc depending on staging and hormone results. Today the breast clinic consultant said probably chemo first before any surgery but was evasive about the reasons why. She also wouldn’t reveal hormone testing results saying that the team where my Mums treatment will be carried out will discuss this. Poor Mum is now worried sick about some info being revealed but not other. All the woman would say is that it’s not first stage! They seemed very surprised Mum wanted a frank discussion with everything laid out on the table. I hope you are going on ok and know a little more about your treatment plan. My Mum has been told she has to have a CAT scan and am presuming this is to check to see whether the cancer has spread.

[Val Beach]

I started chemo Wednesday and already feel mentally better that everything is moving forward . I’ve also met some amazing ladies in various waiting rooms at different stages in treatments , who have given me advise , and made me laugh 😄

[Kip]

Hello to you all, sorry you are here but glad to have you all the same!

It is the most difficult time when you have just been diagnosed, so many unanswered questions, new terminology to get your head round and those dreaded waiting times for results.   I was diagnosed with Grade 2 ductal in April 2018.  I had to have an MRI before treatment plan was sorted, they explained it was to give a clearer picture of what was going on.  Gave a definite answer to location, size etc.   Once they had this and the results of the biospy (which sorted out whether it was ER+ (oestrogen) or HER+) I was then given my treatment plan.  Before I could start chemo I had to have a bone scan, a CT scan and a heart scan... all are straight forward and pretty standard as far as I have read.. they just want to get a clear picture before they start.   Unfortunately a 2 week wait for any results seems to be pretty standard.. and boy do those 2 weeks seem a long while... but like others have said before... once the treatment plan starts you do feel more in control and glad something is happening. 

Hang in there, call your BCN and ask questions if you are worried, thats why they are there and obviously come on here and chat, someone always around to answer.

Take care ladies

Kip

xx

[cazchat1]

Hi! I was diagnosed this afternoon and head was reeling - just found your threads and forum which is very helpful and thankfully feeling more grounded x

[Val Beach]

Thankyou sally , I suppose I won’t know until I get there ,x

[SallyG63]

I had to see the oncologist in the breast clinic several times during chemo. They just want to check you're ok and managing any side effects.

[Val Beach]

Started chemo today , all ok so far , but come back to a letter from breast clinic ( different hosp from chemo ) to go in 2 weeks , doesn’t say why , is this normal , all my results are back hence started chemo , is this usual ? Do they just check your doing ok ? Every letter I get I go in panic mode 🙁

[ladybowler]

Susan

I had grade 1 tubular cancer , hormone recepter positive and I never had an MRI, my treatment plan was lumpectomy, sentinel node biopsy, both came back clear so I went on to have radiotherapy and have been on tamoxifen just over 2 years, I will be on it for 10 years altogether.

Helena xxx

[SallyG63]

Strange, my recent cancer was lobular and I still didn't have an MRI.

[Jill1998]

Hi Susan ,I didn't have an MRI either - like Ann says certain types of cancer are harder to see on mammogram so MRI is needed .Higher grades of cancer and those where spread to lynphnodes is suspected may have MRI as a precaution but 95% of Breast cancers have not spread beyond breasts or lynphnodes so it really is a precaution .

[ann-m]

Hi Susan,
As Sally says, not everyone has an MRI. It’s usually done for certain situations, such as if the intial biopsy shows ‘lobular’ bc. If it is ‘ductal’ it’s not usually done as this type of bc can be seen on mammogram more clearly. Lobular bc is more diffuse, so needs another imaging technique.
If you’re not sure, do check with your team.
It is a shock getting a diagnosis, so it takes time to get your head around, but we all do.
ann x

[SallyG63]

I never had an MRI, either first time or this time so not everyone has one.

I had a bone scan and a CT scan this time to check for spread but 1st time round I never had then either. I think it depends on the size and grade?

[SusanCampbell]

Hi..just been diagnoised yesterday grade 1cancer...tteatment plan next week. Is an mri part of all plans. It was not mentioned at diagnosis meeting

[interestingtimes]

Thanks for the reply. I am pretty resigned to waiting... And I keep reassuring myself that a week or two won't make that much difference.

[PeggyCat]

Hi Jill,

Sorry for taking so long to respond. I'm doing fine although real life has taken over this last year, which is  good thing I guess but has given me less time to spend here. I do know that you have had a very challenging time lately, to put it mildly. I'm so sorry about that and hope 2019 gives you some respite on that front. Happy new year and hope to catch up more this year. 

Take care.

Ruth

[Bluetit]

My results took 2 weeks - pretty much each step has taken 2 weeks! So frustrating xx

[interestingtimes]

Bluetit,

Thank you for your reply. How long did it take from MRI to receiving your results? We have decided to tell the children while they are still on school holidays. Hopefully that will give us all time to process it. It will also explain why I keep having to go back to the hospital! I will keep you posted on how it went...

Happy New Year everyone. Onwards and upwards. 

xxx

[Bluetit]

Interesting times - you sound very much like I was last month. We also chose to wait until I had a treatment plan before telling our children. Looking back we were right to do that as we wouldn't have been able to answer any of their questions. The MRI contrast injection is really easy, I bizarrely found it quite interesting. It didn't hurt at all, I was quite comfortable and it just felt slightly cool as it was pushed in half way through the scan. Be good to hear how you get on xx

Val- thank you for posting. I also had a large lump, seemingly much bigger than many who have posted here, which still frightens me. My boob is now off & I'm waiting for my chemo date. I also had a CT scan for bones, liver, lungs etc which by far has been my most anxious time so far. To reassure you, the scan itself was fine & very quick. The contrast dye they used was a warm one that sometimes makes you think you've wet yourself (I didn't feel that myself but thought it was worth mentioning in case they don't tell you!) The wait for results also was very quick but totally agonising. I'd love to hear how you get on, hopefully all good.

Keep in touch x

[Mai7]

Hi ValBeach, sorry you find yourself here, especially at Christmas (but then there is never a good time to receive a diagnosis).  You are right that this is the worst time whilst you are waiting with nothing being done and you can get very paranoid about cancer spreading.  Once your treatment plan is in place you can chat with others going through the same on the "going through treatment" thread.  Here is my story which I hope you find some comfort from :  lifeafterlola.com.  I hope you have a good New Year in spite of it all. xxxx

[interestingtimes]

Thanks Helena.

[ladybowler]

interestingtimes

Hello and welcome to the forum, know it is not somewhere any of us would choose to be.  Just wanted to wish you well for your MRI on Wednesday hope it all goes well.

As you can see on here we are a lovely bunch of ladies who will help and support you in whatever way we can.

Helena xxx

[interestingtimes]

Hi Val,

I was diagnosed on the 21st December so I am with you 100%. I completely understand (as do most of us on here apparently!) the fear, frustration and thinking that it's growing as we speak! I have an MRI scheduled for Wednesday but that's because I have super dense tissue and they want to be sure of what's there. (The bit that freaked me out was the contrast chemical they will use!)

Like you, I just want it sorted. I haven't told my children and won't until we have a treatment plan. I am probably waffling now but just wanted to say I am with you and we're in this together! xx

[ann-m]

Yes Val, that is exactly how in feels in those grotty early days of diagnosis, we’ve all been there, but it does pass.
As ever it’s the not knowing & the ‘what ifs’ that’s so hard to deal with in the early days.
It’s quite normal to feel all over the place & it’s ok to feel the way you do.
Although it doesn’t feel like it, getting diagnosed means, thankfully, it can now be treated.
Loads of support here whenever you need it.
ann x

[Val Beach]

Thankyou eveyone , it’s so lovely to be able to speak to other ladies . I feel like I’m sitting here with this “thing “ and nothings being done to get rid of it , which I know isn’t true . You think it’s spreading with every ilittle tinge you get in your body ! From what I’ve read it seems this can be the worst bit , tests , scans , more tests , and trying to get your head around having it as well , I’ve got to stay positive and except I will have down moments , Merry Christmas all you lovely , strong , positive ladies ( and men ) and thankyou for all your lovely words 😬😄

[Jmm]

Hello Val. It's entirely understandable that being diagnosed with breast cancer is causing you to feel panicky, frightened and unable to eat or sleep. Four days after diagnosis, I blacked out, cracked my teeth and ended up with two black eyes! Not a pretty sight but it certainly took my mind off cancer! So you are in the hands of professionals who are well versed in working through all aspects of the process and getting data at every stage to inform the next step in the process. I too had a bone scan to potentially inform future medication choices. So sending you a virtual hug, and encourage you to look after yourself. It may feel that time moves slowly as you wait for your next appointment/set of results but as other people are saying, you are not alone, there is love, support and experience to draw upon if you choose to do so. xx

[Jill1998]

Happy Christmas Ruth ,hope you are doing ok ?

[PeggyCat]

Hello Val, so sorry you have had to join the forum, especially at this time of year when the waiting is likely to take a bit longer because of the holidays etc. This really is the worst time when you are waiting for results and want to know the whole picture. At this stage we all feel/felt helpless and distressed and I'm sure lots of other people here will come along and back me up on that. 

Initially there is a lot of waiting around for the full story but once your team know the full picture and share it with you things will get easier. The vast majority of people who have BC will have sucessful treatment and go on with their lives. This period you are living through now really is the pits but you will get through it. 

This time three years ago I was half way through chemo, facing Christmas with no hair and worrying I would feel too sick to enjoy it. I actually enjoyed that Christmas and I enjoy life now more than ever. 

Do you have a date for chemo to start? Really don't fret about it too much. For the vast majority of people it's a lot less traumatic than you would imagine. 

You will get lots of good advice and friendly banter here so stick around.

Ruth xxxx

[Jill1998]

https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/January-2019-chemo-starters/td...

[Jill1998]

Hello Val ,welcome to the forum.Not the Christmas present you wanted ! It's a very horrible, shocking time when you are first diagnosed but it does get better - the initial uncertainty and anxiety is awful but once you know exactly what is going on and what your treatment plan is you do feel a lot better - no matter what the outcome of scans etc .There is lots of support and advice here from people who understand how it feels .If you are starting chemo in Jan - join the Jan monthly thread - you will get loads of advice and support .We are all here for you - you are not alone .Best wishes Jill x



.

[Val Beach]

I was just diagnosed with breast cancer. I’m told it’s invasive ductal, treatable with chemo before op as I have a large lump. Don’t currently know grading or anything. In huge panic as I had node biopsy today ( get results next week ) and have come home to letters re nm bone scan ? Is this the normal ? Can’t sleep , eat , panic all the time , any advice x