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newly diagnosed with grade 2 invasive ductal bc

18 REPLIES 18
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Re: newly diagnosed with grade 2 invasive ductal bc

Hi everyone,
Just come back from yet another whirlwind of hospital visits, had a 3d scan ready for my Mx on Tuesday, having a reconstruction from my tummy!!!! Then to get results from sentinel node biopsy, they took 5 out and 1 has come back showing mininal amounts of cancer cells (think thats what she said) they are gonna remove another 6 when they operate on Tues.......... has anyone else had this? What does it mean? I try to take it all in but struggle!!!!!! Looks like I'll be having chemo, I'll take whatever I need to get rid of this nightmare. I'm so scared , I never seem to get good news, was really hoping for clear nodes, desperately trying to hold it together but feels like I'm falling apart!!!! I know that compared to some people I'm probably in a better position but everyone I see my children cry or look worried it breaks my heart! I don't know what the future holds but I'm buggered if I'm gonna let it beat me!!!!!!! Big hugs to all you amazing ladies, together we are strong xxxx
GIJaneH
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Several of my contemporaries cried in the shower....
My top tips for chemo are: take ginger tablets day before and for 3-4 days (helps with the nausea if you have any).. take seriously what they say about mouth care...be gentle with yourself.... phone your breast care nurse/chemo suite if you have ANY concern/questions. There is no such thing as a daft question! I ended up with a great system - ring BCN... (mine was fab and always rang back and asked good, open ended questions).. she would often say "I think you need...." and I would rign the GP surgery, get a call booked with Practice Nurse. When she rang back I'd say "BCN says I need..." and she'd leave me a prescription for it! Worked a treat for us! I have to say though, that whenever I rang the surgery and said "I'm on chemo" they bent over backwards to be helpful.

Top tip for surgery: take ear plugs to hospital. Accept all the pain relief offered (not that it's too bad, but it helps you sleep!) do the exercises gently, but don't try to get your arm up too high too soon (there's some research now that says it can set of lymphodema to do too much in the first week or two).. I found an audio book was easier to cope with than holding a book...

Top tip for rads: use Aloe Vera Gel as soon as you finish. Use buckets of moisturiser starting weeks before rads, covering large area. Traditionally most places recommend acqueous cream. I used that for washing, but a baby moisturiser otherwise. Anything for babies is OK I was told. I used the Arbonne one because it felt as if it cooled the skin. Whenever it feels hot, slap some more cream on. I got suntanned and peeled as if I was suntanned, but nothing worse...

Top tip for survival: use this site - join a thread of people going through what you're going through at same time (start one if there isn't one) Be prepared to have good days and bad days... take each day as it comes (reign in those thoughts that go shooting off into the future, the "what-ifs") Live in today....
Find a Look Good Feel Better session and go and enjoy... you get a goody bag with over £100 worth of make up in it, and a good afternoon being shown useful things like how to put your eyebrows back on!!! It's good to feel human again!

Give yourself little treats.... as the advert says "you're worth it" !!

You may find that friends you thought would be there find it hard to cope and disappear... you may also find that people you knew a little turn out to be stars...

Some people will say the stupidest things to you - try to laugh..... there was a thread "well meaning but annoying things people say". My classic was my Father in Laws girlfriend who rang the night before surgery to wish me well, saying "it happened to a friend of mine a few months ago. She's in the mental health unit now" What the ??? Laughter is the best medicine!

hang on in there....

Jane (On a day off from being back at work!)

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Re: newly diagnosed with grade 2 invasive ductal bc

Hi Girls
Jlr - hope you know my first reply (starting Hello! How lovely...) was for you? New to this so will take me a few attempts to get it right!
Amber D - you also seem to be at the same stage as Jlr and I. My chemo is FEC-T, are you the same? Hair loss and sickness - my biggest fears but a necessary evil on this journey. Still terrifying though.
I feel a bit brighter having read all these stories. What a revelation!
Thanks and hugs to all xx
Jlr
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Pretty pink dress, My side effects are not too bad fom chemo, am on FEC_t and had first one 14 days ago, it's really not as scary as you think its going to be. My hair has started to come out but only slightly eg hairbrush is full of it but it's not noticeable when you look at me. I seem to have stopped all the crying not sure why as I don't feel any calmer inside but since starting chemo the crying seems to have jst dried up, perhaps I have just cried everything out of me. To be fair have never cried infront of my son mainlly just as you say when am alone! check back with me any time and please feel free to pm me with any questions you have, it sounds as though we are both at the start of the same journey! Take care janey xx
Jlr
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Thank you jane, it's so good to hear from someone who has been through it and is doing well! Xx
Amber_D
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Hi girls,
There are so many of us in this situation but its good too chat and support each other
Pretty Pink Dress- I start chemo 2/4 so just a few days behind you what type are you getting.
i was diagnosed grade 2 invasive ductal nodes affected, had WLE & ANC histology report stated grade 3, 3/22 nodes affected and cancer had spread outwith one of my nodes. The good thing got the required clearance and now just waiting again.
I feel I have to be strong for my kids and oh but it is ok to cry and let it go
big hugs to all xxxx
Guest user
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Re: newly diagnosed with grade 2 invasive ductal bc

Jane, I think you rock!! Hearing stuff like this definately makes it more bearable.
Thank you, thank you, thank you xx
Guest user
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Re: newly diagnosed with grade 2 invasive ductal bc

Hello! How lovely to hear from you. Isn't it just the worst shock in the world? I still feel as if I've been hit with a sledgehammer. My tumour was 2.5cm and only 2 of 10 infected lymph nodes, also hormone receptive. My treatment plan is exactly the same as yours! No wonder you are freaking out - as if all of this isn't enough to contend with, never mind the ct scan showing indeterminate nodules on your lung! I had all my scans yesterday (more waiting for results...)and my head is still spinning today!
How are you getting on with the chemo? Have you lost your hair yet? I apologise for all the questions but it just so good to know I am not going down this long, scary road by myself! Do you have these dreadful crying fits when you're alone?? People think I am strong, and I am most of the time, but sometimes I am a crying mess!!
I absolutely know what you mean about your son, I want to weep everytime I look at mine. I play everything down a little because he is at such a tricky age - prelims, highers, school prom, hormones.....poor wee soul. He knows what's going on though and if I can be strong for him, he will be for me. So far, so good, he is amazing.
Thank you so much for replying, hope to hear from you again soon.
Take good care of you xx
GIJaneH
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Hi Ladies - just popping in as an oldie... i was diagnosed with invasive gr 2 ductal cancer with lymph node involvement 2 years ago, and I'm doing well.

For me, they knew that at least one of othe lymphs was "affected" but no-one mentioned chemo at the beginning. I chose to have a radical MX as the choice was that or take out what they knew about, see what the margins were and I might need an MX anyway. Go for it, said I. Get it over and done with. It reduces risks as well.
So... MX... and node clearance 10/18 nodes affected.... so definitely rads... after chemo! The works! Well, the op was a doddle (really).... chemo affects different people differently. I read on here the other day of a lady who sailed through it. Others found it worse than I did.... Wasn't my best time, but you cope (with the help of information and support on here)... and after chemo, rads were a breeze... It took a lot longer than I'd thought or hoped to get "back to normal" and learning to be gentle with self was a challenge!

It is human to have our feelings going up and down ... especially with what your brain and emotions are trying to process.. When I had my first lump (which was only a cyst as it turns out), my children were at primary school, and I remember being asked how I was coping (during the waiting for results phase) I replied "I'm choosing to think positive, but then, every so often, I wonder how the children will manage without me". I was sharply told I "shouldn't think like that". Well, tough....(frankly) that's how I felt... When it really WAS cancer many years later, the kids were a great support... well, my daughter was fab and my son tried!

Still taking the tablets... still thinking positive MOST days... but we are allowed wobbles...

and this forum has been a life saver!

Bless you
Jane

Lucy_BCC
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Hi pretty pink dress and welcome to the BCC forums

In addition to the support here our helpliners are on hand 9-5 weekdays and 10-2 Saturdays with further support, information and a listening ear on 0808 800 6000 so please feel free to call

The following links will take you to further support ideas from BCC such as our 'One to one support' and 'Live chat' along with further information packs and support around treatments and hair loss and you can read more here:

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk

http://www.breastcancercare.org.uk/treatment?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=treatment

Take care

Lucy

Jlr
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Hi pretty pink dress, I think we are very similar, I am 44 with a 17 year old son also. I was diagnosed on 4th feb and have had lumpectomy and full node clearance. It was a 4.9cm tumour and 9 infected lymph nodes grade 2 and hormone receptive. I had my op on 19th feb and started chemo 2 weeks ago, I will have to have radiotherapy at end of chemo and 5 years of tamoxifen. I am still freaking out and imagining all kinds of spread due to the amount of infected lymph nodes and especially as ct scan showed some indeterminate lung nodules that need to be checked gain in 6 months. I am staying strong on the outside and keeping things as normal as possible but every time I look at my son my heart breaks! I know I should be thankful that he is nt a toddler and that yes he is nearly an adult but I just can't bear the thought of not being there for him at any age! Xx
Guest user
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Re: newly diagnosed with grade 2 invasive ductal bc

Hello, I have been reading the forums on this Site since I was diagnosed on 15 Feb. I also have invasive ductal bc, grade 3 and am also struggling to cope. I have had a lumpectomy and snb, followed by an anc a couple of weeks later. I am a single parent, my son is 17 and the light of my life. I have an amazing supportive partner and the best family and friends but I have never felt so scared and alone. It has been hugely comforting to read that these feelings are normal. I start chemo a week today and I am also frightened about this. I am really upset that I will lose my hair. I am 45 years old and would love to chat to anyone in a similar situation. I hope I don't sound like a terrible moan 😞 Hate these feelings x
poemsgalore
Member

Re: newly diagnosed with grade 2 invasive ductal bc

I was told I was HER2- before surgery, but as lydia said, there are a lot of factors to consider.
chascat
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Oh pja, it's a horrible place to be, you'll better when you know what you're dealing with I promise, you will notice every ache and pain, welcome to our club paranoia! Im 14 months on from diagnosis but where you are now, my god, terrified doesnt begin to describe how i felt. Regarding chemo, it's not just node involvement that determines chemo, tumour size, grade and your age play a part (I was 44 with clear lymphs, small grade 2 tumour but chemo was advised because of my age), also the her2 status isn't usually determined until after your surgery, if this is positive you'll need herceptin which has to be given with chemo. I realise that's a lot to take in, any questions, please feel free to pm me.
Take care
Lydia

poemsgalore
Member

Re: newly diagnosed with grade 2 invasive ductal bc

Hi PGA

I too was dx with invasive ductal, after mx, it turned out to be 3cm and grade 3, and I have heard of tumours bigger than that. As toriaconey said, it's more about what kind it is. As you know you will be having Tamoxifen eventually, it is obviously hormone sensitive, which is good, as it is another layer of treatment. You may not have to have chemo, depending on whether you have affected nodes, which they won't know until after surgery when they usually perform a sentinal node biopsy, and what grade it is. Have they mentioned radiotherapy? I was initially told just rads, followed by hormone tablet, but they found cancer in nodes, hence I'm currently having chemo. Another option might be to have chemo before surgery to shrink the lump, then have a lumpectomy instead of mastectomy. As for hormone sensitive lumps, they can even occur after menopause as the body can form Oestrogen from fat via a chemical reaction. I'm 62 and long past the menopause, which is why I will have to have Anastrozole which is an aromotase inhihitor, to stop my body from making the hormones. There are so many options nowadays, but whatever happens, please keep coming to these forums for the support you will get.
Big Hugs
Poemsgalore xxx
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Re: newly diagnosed with grade 2 invasive ductal bc

It's strange....when we're dx we think of all the aches & pains. We imagine all sorts of things.
I'm nearly 5 years out and the early days are really scary. It does get better.
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Re: newly diagnosed with grade 2 invasive ductal bc

Crikey what a lot of things for you to contend with all at once.
I can't answer about the various pains you have or the voice loss. I suppose if it were me i may ask to speak with the Breast Care nurse who may have been at your appointment and therefore would have a record of what was said. It would be a start point to tide you over whilst you wait for these other things.
It's the pits not knowing what is going on in your own body and nobody being able to tell you in a timely manner (as far as you are concerned).
As far as size of breast cancer - i think it's more of an issue what sort it is rather than the size. However, depending on what treatment is offered according to your eventual need/diagnosis, a larger lump may need a larger operation in terms of tissue taken so, depending how 'large' your breasts are or/and where the lump is - there may be advice regarding eventual outcome cosmetically with a 'lumpectomy' vs. a mastectomy. This may be why a mastectomy was reccomended or perhaps you opted for Mx.
That's about my limit of knowledge but no doubt others are better experienced to give you more support. I guess just to say that the forum is here for you.
angiepops
Member

Re: newly diagnosed with grade 2 invasive ductal bc

hi
you have exactly what i had, diagnosed on 13th feb , i am now 10 days post mastectomy and anc and feeling good. i have to say that where you are at now is the absolute worst place you will be in because there is time to wait before anything actually gets done. what a shock it is though, and i so feel for you, but i have to say just be as normal as you can be, if you want to moan or cry or whatever you need to do, then do it. you will think that every creak and niggle is major but i think thats just normal feelings for us all.
mine was actually 3cm, and im fine.
good luck with your treatment, keep in touch with us. any questions feel free.
happy thoughts, angie. x
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newly diagnosed with grade 2 invasive ductal bc

Hi everyone
Looking for some reasurances ,had my results on 13th marchnow have to go back to bc clinic in 2 weeks for lymph node biopsy!!!! Thought I would remember everything I was told but I really can't, I know I'm having a Mx and probably chemo then 5 years of tamoxifen, the cancer is between 24-45mm ........is that big?? Also because of my age (44) and not having gone through the menopause it's feeding off the oestrogen in my body!!!!! On top of that I've had a very snotty nose and a nasty cough for about a month,last night when I got back from the clinic I started to lose my voice, today it's nearly gone completely!!!!! Don't know if it's connected, I've also got a strange kind of pain in my back that feels like something moving around in side it, sorry if I sound like a drama queen but I keep worrying the pain is the cancer That's spread!!!! I am trying to be positive but I'm all over the place at the moment. My consultant told me to carry on with my job (aerobic instructor)as normal but I so worried Ivan stop shaking and having bad thoughts  sorry for the rant...... love and hugs to you all Xxxxxxxxxxx,