Hi everybody,
I don’t need specific advice, I think i just need to know that I am not alone I’m 32, was diagnosed in July, was told that my initial tumour in fact had two satellites, and so had an mx. At the time I was told that the chances of it having spread to my nodes were low, and so my operation was planned with immediate recon with expander, and if my nodes were clear, then I wouldn’t need chemo.
I woke up in the recovery room to hear a nurse saying ‘Well I can’t see anything of an expander’ and knew then that my sentinel node was positive. It has been such a blow as I wasn’t mentally prepared for the disappointment or fear that cancer in my lymph nodes would bring. I don’t have a treatment plan yet but every doc I’ve spoken to says to expect chemo, rads etc.
I am completely paranoid about the cancer in my nodes. I had nodes removed from my armpit but can’t helping about spread. Is there anyone else in the younger women’s forum with spread to the nodes?
You are not alone. I’m older at 49 but still, apparently,considered in the younger woman category by breastcare team, just. My ultrasound said I had 3 areas of cancer tissue and the largest was approx 2.7 cm. However, pathology, after my mx, measured it as 3.5. I was horrified at the discrepancy, and that a micromet was found in one of 5 nodes. BCN said it’s not the news you wanted, but it’s the next best thing. Surgeon told me they wanted to do a clearance, just to make sure, but any other node involvement very unlikely…wrong. 2 nodes with full blown cancer cells well established. I went into meltdown. I had already decided, at the point when I was still borderline for chemo, I would have it. I had my first session two weeks ago. Now I feel very lucky they went back in. What if the pathologist had missed the micromet after the first op. What if my surgeon had decided not to do second op. My BCN, from the start, repeatedly said cutting out out is the best cure. Well, I don’t know if there is anything still lurking, but they have cut out as much as they can, and what we know was there is no more.
Hi Mel Im 39 and had a mx in July with no offer of recon. Dont think they offered me recon as they knew had spread to lymph nodes. The Ba**ard was in 12/16 lymph nodes. Had them all out so now they cant harm me anymore the cancer is in the bin!
I started chemo a week ago and even though its hell I wanna make sure I throw everyhting I can at it
Think chemo largely depends on if in LN or not but as you are so young you may be offered it too
I gotta have rads too so there would have been no point in me having immediate recon. I know how hard it is to wake up without a boob it is heartbreaking then you feel guilty for crying and mourning it thinking you are being vain at least I did anyway.
Concentrate into fighting the disease first as your focus.
I would like recon when this is over but first I want rid of the other boob too as I will be afraid that it will come back in other one. I honestly think will be less traumatic for me going round with no boobs rather than one uddr and then nothing on other side I hate feeling lopsided
I am in Manchester dont know where you are located but please pm me if you wanna chat more
cheryl x
Hi Mel, you are not alone. I’m 41, dx at 40. I’m having chemo before surgery to try to reduce a large lump. Initially a lymph node was enlarged and was biopsied twice but twice the results were inconclusive. Last week I had the results of my mid chemo MRI and I asked the onc if there was any chane to my axills. He replied “No, still enlarged nodes.” I said, “Plural? How many?”. He wouldn’t answer me, saying it was an irrelevant question until an SNB / anc had confirmed what they were enlarged with.
This has really knocked me for 6. Surely if it was a low number of nodes he would have told me, given that I know it’s more than one? I think he is trying to hide the possibility of really bad news from me until it is confirmed by path results, but I know he must have made a working assumption they are positive because before chemo he told me chemo would give me a high percentage extra survival chance, and I don’t think you get that without multiple node involvement. I can’t get it out of my head now that most of my nodes must be positive, so so scared about the future.
On the other hand, Mel, I have had a CT scan and bone scan and these have come back clear of secondaries thank God, so even if you have node involvement it doesn’t mean it’s gone further. And I have found plenty of positive posts from ladies on here who have had nodes involved but have been well for many years now. I’m holding onto that.
Hiya I too am having chemo before surgery and I don’t know how many nodes involved but definately one as it was biopsied at dx and came back positive. Ifell apart at that stage but the BS was very relaxed about it and said “We can fix it”. I am hanging onto that and also that a good friend of my sister was dx 20 years ago with a huge tumour and multiple nodes involved. She had to have 9 months of chemo and surgery but is well today with no recurrance or problems. Node involvement is not the end of the world it just means they have to throw a bit more at it. As someone once said (can’t remember who). “we cannot direct the wind but we can adjust the sail.”
Thank you Jayney. I treasure every positive story like that of your sister’s friend. I have actually cut and paste lots of positive stories like that from here and have printed them out to help me stay hopeful. Xxxxx
"Chemotherapy is often given after surgery to reduce the risk of breast cancer coming back. This is called adjuvant treatment. Your cancer specialist will explain what the benefits are and what side effects you’re likely to get.
Adjuvant chemotherapy is usually given after surgery when the cancer is:
large
high-grade
has spread to the lymph nodes
triple negative
HER2 positive (chemotherapy is often given with Herceptin).
Chemotherapy can also be given to shrink a large cancer before surgery ( neo-adjuvant treatment ). If it shrinks the cancer successfully, only part of the breast may be removed, avoiding the need for a mastectomy.
Cancer research trials are looking at improving the effectiveness of chemotherapy and how side effects can be reduced. You may be asked to take part in a research trial comparing different types of chemotherapy."
Hi Im 40 and had WLE & SNB
25mm Cancer NO Node involvement
Grade 2
But trip Neg
So im going to have to have Chemo and then Rads. Not what I wanted but thats all there is
Hiya I was dx in may ( 47 years old) . I was told no the day of biopsy that it was bc and they also did a fine needle biopsy after ultrasound of lymph nodes so I knew that day I had lymph involvement to. Final results 3.6 mm tumour 4 lymph out of 25 involved had full ANC and wle no awaiting chemo…
throughout this dx and surgery my bc surgeon and bc nurse do not appear to concerned about lymph node involvement, it obviously leads to chemo, well in my case anyway. On the day of surgery the surgeon came to see me and asked why was I so worried I explained that I was concerned about LN involvement, his general reply was but it will be gone after today, lots of ladies have this but we sign them off after 5 years.
My bc nurse has a similar attitude ( I’m struggling to have the same) but if we have all the treatment offered then we have done our best. I know people that are 7 and 12 years down the line from bc with a lot of lymph node involvement. Ten years ago the outlook was not the same but thinks have improved regarding treating bc so much that I really think we can all look forward to a happy healthy future. I know ther are no guarantees but there never was for any of us before our bc dx. If we can put ourselves through all this worry and treatment then we owe to ourselves and loved ones to grab life when we finish and to try and put some worry aside, easier said than done i know but if not what’s the point of it all.
lets get this done, get back to a new normal , then get out there and enjoy our lives xx
Hello,
I was 33 when diagnosed and was also dripfed the bad news. I was misdiagnosed for a long time and when i was finally given a biopsy (after many tears abad much begging), I was given the diagnosis of a small lump, I’d need a lumpectomy, then radiotherapy and hormone therapy. Next appointment I was told it was in my nodes and I would need chemo. The following appointment I was told that the lump was actually massive (8.5cm) and that I would need chemo prior to surgery which would now bar a mastectomy. About a month later I was then told I was HER2+++. The most annoying part? My surgeon knew all of this from the initial diagnosis but wanted to give it to me in bitesize chunks. I don’t think that worked as each time I got my head around something, i then felt as though they dropped another bombshell and then another. I’d rather have had one big bomb in the first place.
Over a third of young women will have lympno ode involvement, so you are definitely not alone.
Are you a member of the Younger Breast Cancer Network on Facebook? If not, come and join us. It’s a completely private group and you’ll find plenty of similar stories and support there. You are not alone.
Hi everyone.
I’m. 33 and was dx on Mon with 10mm grade 2 IDC. There is another 2 “cysts” in there so had mri this morning to determine what surgery I’ll be having on the 20th of this month. I think I’m only getting through this week because of this forum.
Can anyone enlightened me on what is the crack with LN? How many do we actually have under our arm anyway? And what are satellites?
Mind boggling stuff this BC…obviously not as straight forward as I thought before I had the bloddy thing. ignorance really was bliss!
Sarah x
No expert, Sarah, but here goes. Whatever surgery you end up having, the surgeon will definately be taking some nodes from your armpit to check for any sign of cancer cells. We all have a unique and random number, but general rule of thumb is that there are a handful of nodes whose job it is to look after the breast. These nodes are identified prior to and during surgery, as these are the ones most likely to contain any naughty cancer cells, if any.
Hi Mel, I’m also in my 30s, didn’t need an mx, just WLE but surgeon was confident nothing in nodes as had several a ultrasounds and an MRI, the SNB showed it in nodes and this completely threw me almost more than initial diagnosis ifi’m honest, they did a full clearance and in the end there was cancer in 11/28 nodes. they do seem to offer chemo to younger ladies where they might not to others, (my surgeon said to me that if without it you’d be ok for 30 years then if you’'re in your 60s you’ll prob be dead of old age in 30 years but if you’re only in your 30s now they need to keep you going for double that!) and as it’s in your nodes they will almost certainly want you to have it. All I can say I that for me it’s not been as bad a I thought it would be. xx
Good luck to both of you. Mel - I have met so many young women through this journey - the younger womens breast cancer facebook group is a wondeerful peer support group. You will always find somebody who has been through or is going through what you are there.
sarah, they will most likely do a sentinal node biopsy to get a sample of the first nodes that the breast fluid drains to. if these are negative then the chances are that there is no cancer outside of the breast itself.
take care.
Deborah
Hi, I am 43 therefore not superyoung but still young, I had the same experience, fine needle was negative but then I had tumor in my armpit, do not panick, I had one limph with metastatic cancer but the oncologist was very encouraging, you will be fine! Chemo is hard but you are not alone, there are so many women in our situation! Be confident, be strong! You will beat this and live to see your grandchildren! xx
Hi i am a 43 yr old mother of 4 children .atthe end of november last yr i was diagnosed with breast cancer ( invasive) whic had spread to lymph nodes ( only 1 was cancerous) .i had my op 2 weeks before xmas but because lump had grown to 3.5cm theyhad,nt taken enough off ,so after xmas had to have more shaven off to get a clear margin .
i have had 6 months of chemo ,finished radiotherapy end of august this year due to see oncologist on the 17th october .
the last week or so my operation arm has been going numb occasionally and whilst checking myself foun some lumps in my arm pit .i have rung my breast nurse whom i will see tomoro but slightly nervous .just hope things are not what they seem .also because of what we have gone through does anyone think have they actually got it all xx
I’m 32, was diagnosed in July, was told that my initial tumour in fact had two satellites, and so had an mx. At the time I was told that the chances of it having spread to my nodes were low, and so my operation was planned with immediate recon with expander, and if my nodes were clear, then I wouldn’t need chemo.