Not sure where to begin really - it all seems such a new territory of terms, abbreviations & trying to come to grips with treatments.
I was diagnosed 14th Oct with grade 2 invasive ductal breast cancer. The treatment suggested was surgery to remove the lump (2cm in size) & 2 of the lymph nodes, where if there were clear margins, I would then under go Radiotherapy & take Tamoxifen for 5 years. My surgery was the following week.
Last Monday I went for the surgery results & was told there was nice clear margins, that my lymph nodes were clear & that no more surgery would be needed - hurray I thought… Then came the “however”. Apparently the grading has changed to grade 3 so therefore its been suggested that I now see an oncologist to discuss chemotherapy.
Now I don’t know what to think. How come you only come up with questions after you’ve left the appointment!
Has the grading actually changed since the biopsy or does this only become really clear following surgery?
Is having to have chemotherapy a strong probability (apparently my age means I’m more likely to be offered it - I’m 43)?
Will I still be needing to have radiotherapy too & will I still be offered Tamoxifen?
My consultant said my hormones “were feeding the cancer” & with me still having periods, I’m petrified that until these are stopped, this thing could suddenly start up again.
I asked about screening for my 2 teenage daughters (17 & 18), but apparently that will not start until they reach 30. Is there a blood test I can try & push for them now?
It seems to me that I don’t really know as much as I should about what I’ve got - many other posts I’ve read on here with people around the same stage as me appear to know much more. What should I be asking? My oncology appointment is this Friday morning & I would welcome any heads up on what will likely happen. I would rather be as prepared as possible should she recommend chemotherapy.
Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site. Also you might find it helpful to give our helpline a ring and have a chat with the staff here, lines are open now until 5pm (weekdays 9-5 and Sat 10-2) 0808 800 6000
Hi Sweets
No wonder you are feeling confused, there’s so much to take in isn’t there? Support and advice is never far away on here though.
Firstly, I think that if you contact your breast care nurse she will be able to talk through the details of your cancer. For instance, do you know its staging? Stage is different to grade. Stage status is based on the size of the cancer, whether its contained within the ‘lump’, or whether cancer cells have escaped into surrounding breast tissue and/or any lymph nodes or beyond to other parts of the body.
As your surgeon.described your cancer as being fed by hormones, you could ask your BC nurse if that means it was both ER+ and PR+ (Estrogen positive/receptive and Progesterone positive/receptive) or just one of those.
For instance I had 100% ER+, grade 3, stage 2, invasive lobular cancer, and it had spread to the first (sentinel) lymph node only.
Only when the cancer is taken out and analysed by pathologists, is the whole picture seen. A biopsy sample will give the surgeon a good idea whats going on, but its not that uncommon for a biopsy result to differ from a whole tumour analysis.
A grade 3, hormone receptive diagnosis is usually a reason for chemo, rads, and tamoxifen. You could ask your oncologist how effective chemo is likely to be in your case, as against say, just taking tamoxifen only.
Thats as much I can advise really, as I have no knowledge about relevance of getting your two daughters tested.
Hope I’ve helped, if only in some small way.
Happy to listen, anytime x
((hug))
Hi again & thank you so much for your replies - all of a great help & lots for me to go forward with to ask the bc nurse & onocolgist
There’s something else that’s been eating away at me too… I’ve not felt “right” since last Christmas really. Not ill, just not right - sort of tired & uninterested. I had put it down to getting older, stress with my business, etc. I asked the consultant if the bc was the reason for me feeling like this. She replied that I shouldn’t be feeling ill unless the cancer was worse than they thought or it had spread, which would bring about other symptoms. But I did have symptoms in that I had an itchy breast, followed by an ache - i thought i’d found a lump, which made me go & get this checked out, but where i thought i’d found the lump, but neither my GP or the consultant could find it & the cancer was found in a different area altogether (around where the ache was). Did my mind imagine the lump to make me do something about this or is there a lump there & they’ve just seen the other area? I’ve also had this achy shoulder blade for a long time too. Now this feeling won’t go away.
Another thing that’s confusing me also, is howcome certain consultants press ahead with different treatments first? I was speaking to a lady last night who’s lump was around 3cm, so she’s gone through three courses of chemo & then her lumpectomy is scheduled for next month (her lump has now halfed in size). She said her consultant (we are under the same hospital, different consultants) felt it important to zap away as much as possible with chem before surgery. Am i just getting over anxious by thinking that would have been a better way for me too? Does cutting into the cancer before chemo encourage the cells to spread? She’s also had an MRI scan & is quite confident that it’s no where else in her body. Will I be offered one too?
Please forgive me if these questions seem daft.
Thank you all for reading - hope everyone’s having as good a day as possible
The following links will take you to the BCC ‘Treatments’ and ‘Just diagnosed’ information and further support ideas which you may find helpful over the coming months:
This booklet contains information about familial breast cancer as you have mentioned you are concerned about your daughters this may help you to understand the process:
Also, as my colleague Jo has already mentioned, our helpliners are on hand with support to help you through this so please do feel free to call to talk any queries/concerns over
Hi Sweets,
Every doubt or fear you have is valid and needs to be addressed, so don’t be hard on yourself about worrying. We’ve all had/got worries, doubts and fears… its part of the BC journeys we have found ourselves on… Its par for the course. You haven’t said if you’ve taken any painkillers for your achy shoulder, if you have but they don’t help, then I would urge you to mention the ongoing ache at your next hosp appt. I feel sure they will organise an xray or scan to have it checked out.
Also ask your oncologist why you weren’t a suitable candidate for having chemo first prior to surgery. Hopefully it will put your mind at rest, having the reasons explained. Understandable that you are wondering why that other lady had chemo before surgery. But I’m sure your oncologist will be happy to explain why that wasn’t appropriate for you.
Good luck, and hope today has been a bit better for you.
Lesley x
Hi again, just to say, having read your latest post about nurse not telling you complete description of your cancer. Ask your oncologist, he or she will definitely tell you, stage, grade, type… everything.
Protocol and guidelines dictate that your breast surgeon and oncologist, and rest of breast care team, must not hide anything from you, so ask your breast surgeon or oncologist anything you need to know regarding your cancer or treatment. Maybe that nurse thought that you only wanted to know the bare basics of your type of cancer at that specific moment. Definitely it wouldn’t have been a case of her keeping you in the dark, or keeping something sinister from you. I reckon she just ‘read’ you wrong.
Hope that helps x
Hey Suzanne
Think Mary’s spot on about asking for copy of your pathology report.
Don’t remember that being an option for me 10yrs ago when I had my first encounter with BC.
So… If a cancer is described as being fed by hormones, then its hormone positive.
HER2 is different, its a certain protein that causes cells to multiply quickly.
Good luck for Friday. I’m having my pre-op assessment that day.
I’m having a lumpectomy and sentinel node biopsy on 20th.
Almost got to 10years no evidence of disease as well! Damn!
Keep telling myself, ok, so I’ve got cancer in my unaffected boob,but its been spotted early and its the size of a pea, ultrasound showed lymph nodes look clear, I only need breast conserving surgery then rads in January. So no mastectomy, with 14 nodes removed, no chemo…
Its all good, right? So how come I’m back on the rollercoaster of emotions again? tough and strong (the real me) one day, an emotional quivering wreck the next, worrying about every ache and twinge etc etc
Thank goodness for this place, just wish there weren’t so many of us
affected by this awful disease.
Love Lesley x
I have been doing my homework on here too and found out so much in a short space of time.
I looked at cancerresearchuk, Macmillan and NHS and they all explain the grades and stages. When I was first diagnosed (2 weeks after mammogram, ultrasound and needle biopsy), my doctor could tell me the size of the lump, the grade and whether my hormones were receptive.
They now have to find out the stage by a process called TNM (tumour, node, metastasis). My doctor booked me in for a CT scan, MRI scan (this is because I already have breast implants) and a bone scan. All these freaked me out but I was assured that EVERY diagnosis at my hospital has to have them done.
I also had to have the sentinal lymph node op (I was in at 8am and out by 2.30pm) and this was to see if my nodes under armpit we’re clear. The ultra sound didn’t pick up anything but this is routine to back that up. The first place breast cancer is likely to spread is to the nodes (I was told not to panic if it had because they would simply remove all nodes from armpit).
There is a tool online called predict.nhs and my oncologist shoes me a similar prediction, where you can type in your age, grade, hormones etc and it will show you whether chemo would benefit.
Everyone has told me to stay away from google so the best advice I can pass on is stick to the websites above and the booklets from the hospital then you will be getting reliable information. I was driving myself mad with survival rates and statistics but most websites are really outdated.
My nurse made me promise not to go in google…which was hard! But I thought if I go on the official websites then they can’t be wrong can they? The predict tool I use everyday, I also drive myself mad with that and type in call case scenarios. It’s hard not to xxxx
Hi, I also saw the oncologist on Friday and start FEC-T 6 sessions on the 29th November. This really does make everything seem real and I feel so frightened of the unknown. I’m hoping to use the cold cap and save some of my hair but have booked in next week to have this cut to shoulder length as it’s quite long at the moment. I’m not sure if I should join the November thread as I’m right at the end of the month.
it’s so unfair. I just want to hug you tight sweetheart xxx