Hi
I’m 51. In August 2024 diagnosed with ILC. All is going from bad to worse since then. Started with diagnosis of 14mm and lumpectomy. After scans situation turned ugly - 29 mm, ER and PR 8/8, her2 low, grade2. Double mastectomy with sentinel biopsy in November’24. 3/3 lymph nodes with metastasis with extranodal spread. I have recovered well from operation. Still did not get any other treatment. Doctors wanted to complete surgery part first.
I was insisting on PET scan before next step - my logic was that if I have distant metastasis we should start chemotherapy first before surgery, so my body has more fighting chances.
I was refused.
They did CT scan instead, which came back absolutely clear, it even says on CT scan results “no evidence of metastasis in lymph nodes”!!
That is the “beauty” of ILC, CT scan is not the tool to find lobular web, it can find tumours.
6th January I had axillary clearance - on Monday (20th) I have got pathology results back - 16/16 with metastatic carcinoma with extarnodal extension!!! Overall cancer was in all 19 out 19 lymph nodes and beyond!!
Since operation I have extreme fatigue, all blood tests (including blood from artery) - normal.
Oncologist agreed with me that it looks like Stage 4 - as this is the only one logical explanation of that fatigue and hellish recovery ( as I had no problems at all after double mastectomy ). My body seems to fight cancer somewhere else in my body with hugely compromised lymphatic system.
Waiting to see oncologist on Monday. Now they want to do PET scan! It makes me feel angry. If I had this scan before it might have give me at least chance to fight.
I know I shouldn’t Google, but if you do not get any answers - just being passed from one team to other - you do Google.
According to medical literature I have found - it is death sentence. I am so fatigued that I do not think I am suitable for any treatment now. I don’t think I would survive chemo now.
Putting aside median survival rate, it looks like I have 1 to 7 months without treatment, or 1 to 3 years if aggressive treatment starts right now, which doesn’t sounds realistic, as I can barely function now.
I feel weak, worthless and useless. Defeated. Alone (in very literal sense)
I have no more energy to advocate for myself.
I am scared.
@kateunlucky
So sorry your in this terrible situation
Sounds terrible what your going through
But please don’t feel useless and worthless , there’s alot of people going through similar to you ,maybe good to speak to one of the nurses on the helpline
Hope your energy levels pick up just try and stay positive sending virtual hugs take care xxx
Thank you, but that’s all I can feel now.
It is so hard to die. Just vanished.
I wish I was stronger. I know I should enjoy every day, cherish every moment but I don’t know how.
Hi, I just wanted to say that , if I’d had the same diagnosis , I think I would feel the same . Cancer and all the scans , waiting and diagnosis are debilitating for your body and mind . It’s exhausting . You are in constant fight or flight .
Have you got a maggies nearby ?
Or a MacMillan centre ?
They have people who you can talk to .
Or speak to one of the nurses on here.
I think they have a “ someone like me”, who will know what you are going through , ad they have been there x
I am with Mcmillan. Talking with their nurses is helping but they kind of dismissive about death.
I don’t even know what to ask? What question?
I know I’m losing this war, there is nothing to do.
I can only imagine how you must be feeling. I remember how I felt when I was going through my diagnosis. They missed my cancer initially and then I found out it was aggressive. I was so anxious and stressed - I have never felt like that in my life. The waiting to find out what they might be able to do was awful. However, they did find a solution for me and I am through the other side and very well now. I know your situation is different to mine, but don’t give up. There are so many amazing treatments now and so many people who are doing so much better than they ever imagined. I am hoping you will be one of those. Sending hugs and love your way. xx.
Hi Kate, as everyone else here I fully understand how you must be feeling and how easy it is to get to the point where you cannot see a way back up. Even in a room full of people this disease makes you feel alone and isolated, you are definitely not over imaging things, to be blunt you are simply so blooming scared. In your situation we all would be. This waiting for answers period is the worst bit of it all. I bet there’s not a person on here who can say they weren’t scared witless while they waited. Nothing is for certain until you get your results and hopefully things are not as you are thinking and there is a light at the end of that dark tunnel you are in.
I can’t tell you how to get past this awful time, I would ask you to go to your gp though and get something to help you with the stress. I dreaded doing that but my gp fully understood how hard dealing with cancer is and was extremely patient and helpful. Try to remember there is always someone here to listen, you are never completely alone. I wish right now I could reach out and give you a big hug and remind you we are all here for you, we are holding your hand, we’ve got your back. Sending you love and hugs xxxx
I have recent ILC diagnosis. I thought it was a slower growing cancer.
Do you think the Axillary Node removal caused all this fatigue? I wasn’t sure what you were saying about PET scan first.
I agree that you should get some support from Primary Care or better care team that can ease some of your concerns and address your fatigue.
@kateunlucky
Please try and speak to somebody
Help line or macmillan believe me it does help especially when your so low or in my case I was angry , you took first steps joining forum xxx
Firstly, we all send our love and although no diagnosis is the same, we have all felt hopeless and scared and my first advice would be to go to your GP and get some medication- talking is great, but I needed cold hard drugs (diazepam and mirtazapine) to get me through the early days.
I genuinely thought I was going to pass out every minute, have a heart attack, and I told my husband I wanted to die because I couldn’t see how I could get through this. That’s where the drugs helped me and although I was still scared and upset, it helped me be more rational and the mirtazapine helped me sleep.
Diagnoses change all the time - I went from simple lumpectomy to bilateral cancer and double mastectomy with four sentinel lymph nodes removed - and I can tell you the mastectomy was much easier than the lymph nodes so I would suggest one possibility for your fatigue could be recovering from that.
I’m just a few months past diagnosis and still at the stage where every ache feels like a secondary - yesterday I was very dizzy, nauseous with headache and Google suggested I go to the ER because possibly secondaries in my brain. Today I woke up and just ran 6 miles. Our bodies play tricks and Google doesn’t know your exact diagnosis.
But even if it is stage 4, look at all the fabulous women on here living with stage 4, or the fabulous Bowel Babe who lived many years with stage 4 or Tricia Goddard and Jacqui Beltrao both with stage 4 breast cancer.
Please don’t give up - there are many drugs and clinical trials you may benefit from, and who’s to say even if Google was right and you had three years, that a new drug doesn’t come along in two years which works for ILC.
I saw something the other day which said something like don’t die before you’re dead, and it really hit home. There’s still options and experts out there and always hope.
But I would start with your GP and getting some drugs to get through this. Good luck xx
@kateunlucky , the waiting for scan results and full diagnosis is agonising. But once your oncologist has those results you will be able to discuss a treatment plan and feel more in control. As has been said above, there is a lot that can be done even for stage 4 breast cancer but dont forget that you have not had that diagnosis yet!. I am surprised that your oncologist mentioned without scans and I would recommend you record all of your appointments in future. Its hard to take all the information in and it you can listen again when you’re at home. I would also stop googling, at least until you get your scan results as you dont have your final staging so may well be googling the wrong thing. Survival and recurrence statistics are really scary as they look at averages of thousands of women and not at the person.
In 2021 I was also diagnosed with a 16mm ILC. I had a lumpectomy and sentinel node removal. 5/6 nodes were positive. Due to the christmas period it was decided I should start chemo as there may be a wait for surgery to do a full clearence. So 8 weeks of chemo then surgery. I was devastated to find that not only that I had 27/28 nodes positive but that the chemo hadn’t worked and the cancer was active. I have had radiotherapy, on hormone blockers for 10 years and just finished 2 years of abemaciclib. At the time of my biopsy results, like you, I was devastated and so scared for the future. I had counselling through Macmillan which really helped and is perhaps something you can do whatever your diagnosis. The waiting is terrible but please dont write yourself off before you’ve had your full diagnosis. My very best wishes to you.
Hi
Fatigue after axillary clearance is expected but not to that extend - according to my oncology surgeon.
I think that mine was found in very advanced stage and diagnostic wasn’t the best. Because ILC has different pattern of grow ( not as a lump/tumour but in web like pattern ) it is very often missed on mammograms, ultrasounds or CT.
After mastectomy and positive 3/3 lymph nodes sentinel biopsy I have asked to have PET scan. As I have mentioned before - my logic was:
scenario 1 - no distant metastasis, I will have axillary clearance, radiotherapy and hormonal pills. no chemotherapy needed in that stage
scenario 2 - distant metastasis, no need to weaken my body with operation, go straight to chemotherapy - as chemo will target whole body including lymph nodes.
But I was refused PET scan, they did CT scan - it came clear, stating - " no enlargement of lymph nodes or any sign of distant metastasis".
Two weeks later I had axillary clearance and 16 / 16 lymph nodes came positive and enlarged (it is impossible it grew so fast - CT scan is wrong tool for ILC ).
So now I am in scenario number 3 - I had an operation and I am in no position to survive chemotherapy now.
HI
I am so happy for you that you have manged to win this battle. That’s amazing I wish I had a bit of your strength.
I am just not doing well. I am not doing - period. I had 4 sessions through mcmillan, they do not offer more than this. I had to borrow money and went private. My money is running out and UC and PIP still not giving me any financial support - demanding more and more documents.
I have absolutely no energy for this.
Because I am horrible person - I am single, live alone, have no friends or family ( I am not looking for sympathy, just stating fact ).
Hi,
Hopefully you are at the bottom of this horrendous Sh.t show and you will find the strength to move forward. I wish you well and send my best wishes.
Hi Kate,
Thanks for clarifying. Honestly I may be in the very same boat. I did the scans; no one mentioned PET scan to me but I might ask. Supposed to get lymph node follow up surgery.
I hope that if there is spread in your case they can get to the point of where and maybe there is more targeted therapy to get you back your energy so you could tolerate chemo if needed. I think the main thing is to not give up and get more opinions if you need.
Dear @kateunlucky, once you have your results you will have a plan of action. That may well be dealing with a stage 4 diagnosis but you will feel a bit more in control at that point. If you are not happy with your oncologist you should be able to change, you need to trust the person treating you going forward. It may be worth going to your GP, they should be able to refer you for NHS counselling and perhaps give you something to help with your anxiety. I am so sorry that you dont have anyone close to support you. Is there a Maggies centre nearby or a local cancer support group or other group you could try. Out hospital has a cancer support department so you may have something similar. Even speaking to your breast cancer nurse might help. Please dont give up, there is a lot of support out there including this forum.
Hang on in there I wish I could give you a hug you have been hit hard and the news is overwhelming to put it mildly I wish you all the best of luck you are due some Take care of yourself
xx.
I wish I had a bit of your strength.