New and in limbo

Hi, I’m Karen and new to this. Three days ago I had a mammogram, ultrasound scan and core biopsy after seeing my GP with symptoms of sore, bleeding nipple and thickened area in my right breast. I was expecting to wait for results and I do have to wait til 6th April for biopsy results but they told me there and then that it is cancer. I’m devastated and confused, having no answers as to what type or how bad. They didn’t explain anything, just said they were very sorry. I’m in limbo now just waiting and trying to carry on as normal. What do I do? My eldest sister died 9 years ago from bc so don’t know if there is a genetic link. Only my husband and remaining sister know. I have three children 10yrs, 13yrs, 22yrs and can’t bear them to know. Any advice?

Hi Karen sorry to hear this. I too was diagnosed last week with BC, have they said what happens yet? Did you see a nurse and have her explain anything on what your treatment plan will be?

No nothing like that, just said that would happen at my next appointment which was booked for a fortnight’s time. It seems such a long time to wait with no answers or plan. Sorry for you too, hope you’re ok its so frightening x

Hi Karen, I’m sorry you have had to join us here but you will find plenty of support amongst the many lovely ladies here across the forum.

Im sorry to hear you have lost your sister , my mum also died of  breast cancer so when I was diagnosed 2 years ago I was expecting genetic testing and a definite link to hers but that wasn’t the case, mine was quite a rare type and not one known to be genetic and mums was a bog standard type so they reassured me it was highly unlikely there was any connection we had both just been unlucky. 

This limbo stage is awful and things do get much easier once you have a definite diagnosis and treatment plan, we told no one until I knew for sure and then only those who needed to know, you don’t have to do anything right now and I didn’t tell my sons until I had all the details so I could be totally honest with them, they are in their 20’s but it was still so hard to have to drop this on them , they dealt with it brilliantly though ?

Just take things a day at a time until you have more information, I know how hard it is but trying to second guess everything is just mentally exhausting, dealing with facts is so much easier, I know you will be thinking about your sister right now as I did my mum but we are all different so don’t write yourself off! Xx Jo 

Hello Karen
I’m a little bit ahead of you and just waiting to see my oncologist for my treatment plan … this waiting part is just the worst. Our brains run away from us and tons of ladies on here find themselves wide awake at 3am - the hour of the wolf I’ve heard it called.
Just try to relax and look after yourself. The hospital are looking after you and you are in good hands. It’s quite usual not to get the full results until the biopsy is done. Hang on in there and use this site to get support from some wonderful ladies…I know I did and their caring positive words have helped me many times. Here if you need to chat - Nina xxx

Thank you for your kind replies, it helps already finding this forum and knowing there are people who understand. Just need this time to pass quickly as my mind tends to lean towards the negative.

Hi Karen, I’m in similar position. Told ive got BC but still waiting further results and a plan. It is difficult to get it out of your head for a minute day or night. x

Hi Karen - same happened to me in December… told me at time of biopsy it was cancer and had to wait until 10th January for biopsy results. I cried cooking the xmas dinner - it was an awful period so I feel you pain at this present time. On a more positive note, fast forward 3 months and after a mastectomy due to having 10 areas of malignancy in my lead breast, I have had all the cancer removed and am going back to work on Monday. You are at at awful frightening time but it will get easier once they get your results back as they will be able to give you your treatment plan tailored to you. This forum is amazing and everyone told me the same, it will be more clear once you know the plan and they were so right. Keep positive, treatment is amazing now x

Supposed to say left breast, not lead breast - mind you after the silicone implant at time of mastectomy it did feel like a lead breast lol x

Hi Karen, the wiating is torture, and it seems to go on once diagnosed, waiting appointments, plans, op, treatments.

 

I only recently diagnosed, in midst of appointments preparing for op on 12th April.

 

Thats six weeks after diagnosis, though many have it sooner.

 

BUT the doctors are so positive, have so many treatments they can offer, its certainly not a dead end, just a diverted journey in life I feel.

 

Anything that helps you relax, destress, do it.

 

Start a journal, write your feelings down, offload them, or paint, draw, I have made a corchet shawl and doing a blanket now.

 

And I find myself talking, telling people is helping me process all this but still overwhelmed.

 

Sharing here has helped and reading the hints and tips section I find really useful.

 

Once doctors get pathology report they will start planning, I took a notebook with me, wrote down questions, still doing this as its so hard to remember all they say and my worries.

 

Knowing we not alone, how big this ‘club’ is, somewhat eases the panic as so many have had great results.

 

I am also using some herbal destressing teas and suplements till I settle down.

 

You are not alone, its amazing how many experience this.

 

:slight_smile:

 

 

 

 

Thanks Alex and Annie for your kind words. Alex didn’t you have to have chemo or radio after your op. I’m visualising about a year off work for treatment .

Hi Karen I’m similar to you too- told on the eh day of my appointment 3 weeks ago (a shock!)which was then confirmed the following week (invasive lobular) but I’m still waiting as I have an MRI this week and more ultrasound and biopsies next week which means even more if a wait! This limbo is awful as I am just imagining it is everywhere! Xx

Diverted journey is a nice way of looking at it Meri. X

Also re advice about your children - you must go with your instincts I think. We told my eldest 2 as I couldn’t hide it as I was so upset. I just wanted them to know the truth rather than worry about a secret problem. However that’s not the way for everyone. It was the most awful thing I have ever had to do but it’s out there now. We could contact their school and friends parents who have all been a fantastic support to us and them and hopefully will continue to be once everything kicks off. My boys were distraught but after a couple of days everything went back to ‘normal’. However it will be tough once the surgery etc starts. There is no right or wrong way. Just your way. Good luck xx

Thank you for your comments, it really does help.  You’re right, the nighttimes are the worst, I’ve been awake since 3am this morning.  If only there were a switch to turn off our thoughts!  I’ve just come back from an appointment with my GP, she’s lovely and I thought it might help to talk to her.  It did help, although she couldn’t really give me any answers she did see on the system something which led her to believe my lymph nodes were unaffected.  I realise I will need some more tests but that was reassuring and also telling me if I need time off work she will happily sign me off.  This at least helps me to think if I can’t face going at some point I can take time off without worry.  I’m not telling work until I have more information and know what treatment I am likely to have, but it is hard turning up everyday and trying to act as though everything is normal. The alternative and staying home alone doesn’t feel like an option either, better to be busy.  Gosh, it’s so tough isn’t it?  The hardest part is definitely the children, I think for me I will leave it as late as possible to tell them.  Once they know they can’t unknow it and I want them to have as much time as possible without knowing.  One kind of good thing in that respect is that I have an auto-immune disease and regularly have hospital/doctor appointments which they are used to and don’t question.  Does anyone find local charities helpful?  My GP recommended one but I’m not sure exactly what they do or if it’s something I’d feel ready for.

Hi Carole - no I didn’t need chemo or radiotherapy after my mastectomy. I was diagnosed with invasive ductal 17mm but MRI found more areas and so bad mastectomy rather than lumpectomy as they wouldn’t have got clear margins with lumpectomy. The pathology came back as all removed but did have the other areas ranging from 0.5mm to 9mm aswell as the original 17mm. It was grade 2 and i’m ER+ PR+ HER2 neg so just on Tamoxifen x

Alex yours sounds similar to mine, I’ve got 2cm invasive ductal cancer that is ER+ and I’m waiting on biopsy results of two other small areas of calcifications. Appointment tomorrow should give me plan of action. I don’t know about HER yet. They think from US that my lymphs are ok.
I’m expecting from their previous comments that I’ll probably have to have chemo.

Hi Carole - my lymph nodes looked normal on USS and pathology confirmed they were clear. Why do you think you will need chemo?

Hi Karen. I’m like you and have my MRI tomorrow and hopefully full treatment plan Thursday. It’s a bit of a whirlwind being told at the initial appointment but they have so much experience the doctors can tell just from ultrasound. I’m 34 with an 11 year old who I told becauE he knew something was wrong. There is no right or wrong way but this group of lovely ladies are definitely here for you. We all are. I’ve already made one good friend on here and taking to someone who actually knows helps a lot. Just don’t google anything because all sorts of horror stories pop up.

Try and stay positive ?

Hi Alex, at my first appointment the BCN said if it was cancer I’d probably have chemo and if pre cancerous then radio.
Well its 2cm cancer grade 2 and two small areas of calcifications that I find out results on today. So in my mind I’m expecting MX and chemo and hoping it’s not gone further. If they don’t do chemo how do they know it’s not gone anywhere else??