Morning all. So I’m joining the club noone wants to be in. Yesterday (on my partner’s birthday ) I was diagnosed with invasive Ductal cancer. It’s grade 2, hormone sensitive which is positive I think? Progesterone coil is coming out Monday . Possibly 1 node involved but won’t know more until an MRI which is tomorrow.
This cancer (I can’t say ‘my cancer’ as it’s too real) wasn’t very clear on the mammograms and ultrasound so they don’t know the size or shape etc to create a clear plan. So the plan to make a treatment plan is MRI, possibly node biopsy and go from there. I feel better for knowing, although I wasn’t surprised as I have a lump, clusters of calcifications on the mammograms and architectural distortions on the ultrasound. Once we have a plan we need to tell our children They’re 12 & 9.
Yesterday I felt very positive, upbeat, ‘this is just a temporary thing to deal with’, this morning I feel tearful. It’s like grief. Shock, disbelief, sadness. I know it’s all normal.
I hate the way it’s consuming my every thought - I’m bored of it already! The last month since being referred to waiting 2 weeks for the biopsy results, it’s consumed my thoughts for the most part. I’d googled and read (science/UK research papers) and researched the heck out of it. Now I want to forget about it but I can’t. I’m just flipping bored of it being in my head all the flipping time!
Yesterday it was such a surreal day - got to hospital, be told you have a serious illness and leave with a folder, carry on with your day. If you went to, say A&E, with something serious you’d be admitted, start treatment etc. But with this it’s “you have a very serious illness. See you soon!” I know that’s how it has to be. It feels a huge event but also like a bit of a nonentity in some ways. It just doesn’t make sense.
I know lots of women & men in here will have been through the same thing.
So sorry to read about your diagnosis and how you are feeling
I for one refused to believe that my breast cancer wasn’t something that could “just be got over” “wasn’t going to be a big deal” “I’ve dealt with worse things” (I lost my dad in tragic circumstances when I was 13, in my head how could anything in life be worse than that?) Your analogies with other medical issues is spot on
“Cancer world” is unlike anything else we experience in life, unfortunately once you’ve walked through the door you are never going back out, but that’s not to say it’s a bad place!
It does feel very surreal at first, and it’s very difficult to explain how you are feeling as there is so much for your head to deal with on top of all the other things we deal with in daily life
One thing I found (and continue to find) really helpful is a journal, just the physical act of putting pen to paper hugely helps in slowing your thoughts down and dealing with them.
The other thing which I found is just talking to others in the same position, be that here on the forums or in real life. There is lots and lots of amazing support available so don’t ever feel like you can’t ask for help: all your feelings are 100% valid
Finally patience is key, in our fast moving world when so much can be available instantly it’s frustrating waiting, but you will get there eventually I promise
Oh @2kittens I remember that feeling so well and it’s over two and a half years since my diagnosis. Everything feels so surreal, and your life becomes a whirlwind of hospital appointments, tests, scans… I remember saying to my breast care nurse “this is a long haul isn’t it”…
Everyone will tell you how brave you are, how strong you are - but you actually have no choice and it’s okay to not feel brave or strong - it’s all a bit shit really. BUT, you will get through it, and you’ll be well looked after by your medical team who’ll make sure they have all the facts, and give you the best possible treatment for you as an individual.
This forum is a lifeline and you’ll find it a great support too - even if (like me) you primarily read others’ experiences to gather information. It’s hard to understand what it’s like to navigate a cancer diagnosis unless you’ve been through it, and everyone on here gets it.
Thank you all. I’m sure it’ll be a difficult, turbulent, physically and emotionally painful period of time. It really does feel a whirlwind - diagnosed yesterday, MRI tomorrow, GP for coil removal Monday then an interlude before a possible node biopsy before another Interlude waiting for node results.
I feel that the only thing I’ve not been scanned by is the self service checkout in the supermarket!
It’s all for the right reasons though. It’s completely shit but it’s here and it needs evicting! Cancer - consider this your eviction notice!!
Welcome to the club no one wants to join @2kittens. You have a similar diagnosis to myself. I was diagnosed on 27/08 and still doesn’t feel real. I found it incredibly overwhelming at first with the sudden influx of appointments after what felt like an age waiting for my biopsy results.
I have found this forum very helpful. I too have young children (12 & 8) and I have to say they have handled it so well! I found being honest and as open as possible with them really helped.
Thank you Do you have a treatment plan now? As much as I’m not looking forward to whatever is coming I’m eager to get started.
Mine wasn’t a clearly defined mass, it definitely has a clear edge one side but the other half just fades away into the breast tissue. The MRI on Sunday is to see what’s actually there, how big it is and if there’s any dodgy looking nodes. One looked ‘unusual’ on the mammogram so it could have cells in it or it could be reacting to something random like a bug or stress.
It is really tough. I was diagnosed 2 weeks ago and my emotions have been all over the shop. It feels completely surreal, even though I’m now booked in for surgery! I found as time has gone on my emotions have settled a bit though I do still have random moments. I also have kids similar ages 11 & 8. We told them the evening we found out as everytime I imagined telling them I cried and I figured it was best to get it over with! And actually didn’t cry when I was telling them 11 year old was quite pragmatic and wanted to know would I get a new boob, and would my hair fall out. 8 year old was quite tearful but I think it was the thought of me being ‘ill’ as I’m not sure she really gets it, and the idea of surgery she is finding tricky. However the more we have talked about it casually over the last few weeks the more she seems to be taking it in her stride.
It is a real whirlwind.
I had surgery 12 days ago. I had a single mastectomy with tissue expander implant as well as a few lymph nodes removed for testing although MRI advised nodes clear, they wanted to be sure. I am now awaiting results to determine whether or not I require chemo/radiotherapy. Have been told will be 6 weeks. As mine is ER+ I will also be going on to tamoxifen for 10 years. I am also awaiting genetic testing results as am 39 years old and not sure of family history as my dad is adopted.
I felt the same in wanting to have a plan as felt more in control. Wishing you all the best for Sunday xxx
Hi @2kittens I replied on your earlier waiting for results post to say I’m a couple of weeks ahead with grade 2 IDC. Mine in ER/PR+
Can see we have another similarity - I also have a 9 year old. Like a few others in this chat I early told her - on 11 september post biopsy and I think knowing weeks before any surgery has been helpful for her. I could then explain MRI, answer questions about fears over recent weeks. Telling her early did mean I couldn’t rule out chemo etc when hopefully , following further tests, it wont be needed in my case. So there are cases to be made re when you have those conversations. It did mean telling the school welfare team about diagnosis ahead of most family and friends, just so they could keep an eye on her too. To my great surprise while my 9yo is capable of feeling teary about a school camp in 12 months time she currently seems to be taking surgery for cancer in her stride. Suspect it will be tougher once the date (28 oct) looms but felt my instinct to share early was right.
Absolutely feel you on the ‘you have a very serious illness, see you soon’ vibe. Has been very strange to see results picture build up (I got biospy results in 3 bits) but no plan to focus on and communicate to work and family.
Best of luck with the ‘hurry up and wait’ that is likely to be the next few weeks. Hope the MRI helps with the uncertainty re size and that the dodgy node is clear.
Hello,
Well done for reaching out. I’ve found this forum very useful. All your feeling are validated and I too felt exactly the same. Some days good some bad, some in between. I was diagnosed 6 weeks ago - grade 2 her2 + ductal invasive breast cancer. I go into hospital on Thursday for lumpectomy and sentinel lymph node removal.
I have 2 children similar ages to you - daughter 14 and son 11 and both my two reacted similarly to you. I desperately wanted a plan (I’m a teacher so used to consistency, planning and being organised). The hardest thing was not knowing what happens next- the whole picture and end result. I’ve since made peace with just only focusing on each step, each next appointment. Cancer is a very individual journey so I’m learning.
The biggest thing is the amount of care and support available. You’ll be showered with caring nurses and a councillor will check in on you at the next few appointments. No question is a daft question.
I’m so sorry you’ve found yourself here. I never expected to be posting or asking questions but here we are.
Allow yourself to feel the emotion. I’ve screamed, shouted, cried and laughed all at unexpected times.
A child councillor told me it was ok to let my children see me cry so they knew it was safe to cry to.
Yet they’ve also see me be open and honest about the whole thing. They’ve seen me be brave and vulnerable. My biggest fear was telling them. I never wanted to have that conversation. I stuck to the facts and filter information to them as I get it.
I’ve found they do ask me questions (often while walking the dog) I tell them what I know and if I don’t know the answer I write it down and find out at my next appointment (or ask in here).
You’ve absolutely got this and this whole community is here who will absolutely get all your worries and frustrations!
Sending lots of love
I had the MRI and it all suddenly hit me. I held it together through the scan as I couldn’t move but as soon as I came out I burst into tears in the changing room. The health care assistant was lovely though. It was a proper “shit just got real” moment.
A positive was discovering the hospital gives free parking to chronic patients and cancer counts so at least that’s a plus!
Then today another spanner in the works. I managed to get a quick appointment for coil removal today. Guess what?! The threads are missing! Now have to have another referral to gynaecologist for them to locate and remove them. It was super uncomfortable having it fitted in December (3rd coil I’ve had) and reduced me to tears despite having prepped with paracetamol and ibuprofen, and today wasn’t much fun either. I’m absolutely dreading having this procedure.
It’s starting to feel like it’s one thing after another.
I now have a date in 2 weeks for a 2nd look ultrasound under my armpit with possible node biopsy depending on what the MRI shows.
I heard someone say having cancer is like a full time job in itself…I completely get that!
Hi
Yes we’ve all felt like this. It totally consumes you at the beginning.
Stay positive , it’s the only way forward, although on the dark days it can be hard.
As others have said there is lots of support on this forum , all who are going through similar experiences.
I’m going for my 4 th chemo on Friday!
Take care
It’s certainly a rollercoaster I’m two weeks post mastectomy and full lymph node removal, I know of one positive sentinel node and am back Thursday for results from surgery, recovery has been so much better than I had imagined I’m doing housework, walking every day able to dress/shower etc and am now not taking any pain meds
Hoping Thursdays treatment plan isn’t too awful but I’m prepared… @denrob1 what chemo regimen are you doing?
As far as I know from initial biopsies I am grade two ER 8/8 PR 7/8 HER2 negative shower I had two more areas that weren’t biopsied prior to surgery so the called it multifocal x
Bless you and huge hugs!!
I am one year in from hearing those words and it feels like yesterday. Once everything kicks in you won’t know if you are coming or going so try to just take this time to process and plan. I spent that time trying to enjoy my time the best i could knowing the next few months were going to be consumed with hospital visits, appointments, weird days etc.
I had almost the same as you - at first one tumour, then two, then three - only one showed on mammo, only two on ultrasound - had to have MRIs and MR biopsies to locate the third. DCIS was never apparent until surgery. First surgery was lumpectomy but the DCIS was deeper than thought and so a mastectomy in the end.
What i will say is - the first few weeks are the hardest, it gets easier. Be prepared that it is the gift that keeps on giving, just when you think you are done, something else will pop up. But for me, meeting women who were 16 years post treatment, 18 years post treatment and more was what kept me sane!! And i was brutally open - i announced my diagnosis on my Facebook because like you - i have a child, i have various different circles of friends. I did not want rumours or gossip!!
Talk - to anyone that will listen, because what has become your reality is every other womans fear. I was adamant that i was going to ROCK cancer and there were very few days that i did not put my make up on and dress nice. My radiotherapy sessions were my catwalk days where i made a huge effort to look good for my days out!!! Yesterday i started Ribociclib and i feel like shite, but i’ll get up and carry on because we are women, wives and Mums and it’s what we do!! But however you do it - you’ll find your path and navigate it YOUR way - there is so much love and support for us out there!! Good Luck and welcome to this club that nobody wants to be in!!!
Hey @2kittens I remember how surreal it was being told I’m seriously ill…yet I’d been living normally and feeling normal.
You will find your way, and there is alot of support on this forum and sounds like people around you. I worked in my allotment every spare minute after diagnosis to take my mind off the unknown, but the stress of constant appointments and investigations had me in tears at points. It will get better. My friend who’s a clinical pathologist told me when they are dealing with someone who has cancer they want to get it right for you so the treatment is right first time so they triple check and then some hence all the tests. Doesn’t make it easier on you at the time though.
Keep posting and keep asking questions, you will get there x
All of your messages feel so close to home! I’m almost 8 months post IDC, hormone +, HER2 neg, stage 2B, grade 3, 1 node involved diagnosis. It’s a crazy roller coaster you are forced to go on and then you realize there are things to learn, ways to grow, and the beauty is in the deep letting go, acceptance and rediscovering yourself. I went through a unilateral mastectomy with two lymph nodes removed, TC chemotherapy treatments, 16 rounds of radiation and now figuring out which hormone blocker will be best as I am technically perimenopause (even though chemo stopped my period). It’s a wild ride and community is best thing to get through plus your care team. You will get through this even though it’s scary as #%^* sometimes. I still worry about spread and all the things, but discovering the beauty of reframing my thoughts. Day by day.
I’m praying for you. I lean on God and this forum for great advice and help to be able to vent and discuss my journey. I’m in remission but taking a blocker, tamoxifen after I tried other blockers. I have 4 years left to take this treatment and I still am not confident it won’t come back. It’s an everyday thought that occupies my mind. I understand. I was diagnosed with the same as you but no lymph nodes removed and the mass was tiny in the duct and did not travel. I’m 70 years old did my radiation and I pray and let God hold me up. Good luck and know you are not alone. Lots of love in this forum. I will keep you in my prayers. God Bless and love you.
That’s how I felt the first time. What kept me sane was that I continue working and shopping like there was no tomorrow. Now 4 years later I am paying the price, the credit cards are my worst enemy. You’ll be fine.
Hi there, sorry you are having to go through all of this and now having to contend with a lost coil to. You will be sent to a Hysteroscopy Clinic where there is the option of Hysteroscopy retrieval. Please request local anaesthetic and take the oral pain relief an hour before your appointment. You’re going through enough with out experiencing unnecessary discomfort and pain. xx
) I was diagnosed with invasive Ductal cancer. It’s grade 2, hormone sensitive which is positive I think? Progesterone coil is coming out Monday . Possibly 1 node involved but won’t know more until an MRI which is tomorrow.
They’re 12 & 9.
xx
Do you have a treatment plan now? As much as I’m not looking forward to whatever is coming I’m eager to get started.
11 year old was quite pragmatic and wanted to know would I get a new boob, and would my hair fall out. 8 year old was quite tearful but I think it was the thought of me being ‘ill’ as I’m not sure she really gets it, and the idea of surgery she is finding tricky. However the more we have talked about it casually over the last few weeks the more she seems to be taking it in her stride.
