Evening all. I was diagnosed in April and after a long wait (felt very long anyway) for treatment to begin I had a mastectomy in august and they removed one lymph node. Last tues was told the lymph node was positive and they wanted to get me straight back into surgery (that Thurs) for axillary clearance. I am home recovering and waiting for results on 14th Oct. They were so positive initially that my IDC grade 2 ER/PR + HER2 - (two tumors 12mm and 3mm) were early, easy to treat and relatively slow. Now they seem less confident and the consultant seemed so surprised that the cancer has spread to my node. I am struggling to feel positive. I feel for the first time that I wonāt win this.
I am 44 years and my kids are 9. 14 and 16. I was hoping that others who may have had a similar journey might be able to share their experience.
Iām sure I will find my positive feet again, but this week has been hard.
Hi Jenny.
Wishing you all the best. I seem to be in a really similar situation to you and waiting for full lymph removal. I too was told treatment would be straightforward and it was really unlikely there would be lymph node involvement. And the consultant was surprised there was.
I donāt have wise words of wisdom, but just
reaching out to say hello, to say your not alone and to send you hugs.
Thanks @frazzle100 for your reply. I hope you donāt have to wait too long for the node clearance. The waiting for treatment and then results is the worst. Best of luck with it all x
So sorry you find yourself here on our āforum we love, but would rather not be part ofā.
Please do not despair about having nodes. I had a mastectomy for a grade 3, 4.3cm lobular tumour with 3 nodes involved. I had chemo and radiotherapy after, and hormone blockers for 10 years. That was all nearly 18 years ago, and here i am still, disease free. A good friend had a tumour with 4 nodes involved over 30 years ago and she is currently still cancer free.
So bring back the positivity, stay focused on the path forward taking one step at a time. Just keep in your mind that there is life after breast cancer. There are thousands of us out there getting on with life but sadly we mostly hear in the media about the relatively few who are not so lucky,
I wish you all the best with the next few months. Look out for the surgery and chemo(if you have that) posts here on the forum and remember the nurses are available on the helpline any time. When you are through treatment do look out for a āMoving Forwardā course near you.
Hello Jenny I had full lymph node clearance along with Mastectomy 5 weeks ago. The cancer was only in the first 2 and my breast cancer 2.5 cm. It is better to get any pathway cleared in case the cancer made its way further along the nodes. Even one tiny cancer cell can grow so by having the full lymph node clearance you get rid of that chance. You will benefit from doing excercises before surgery as it keeps the muscles flexible which helps with mobility after Op. I am about to start treatment again and not looking forward to side effects, hoping they are mild. I do know we deserve a HUGE medal and send a hug X
Thank you @Eily for your reply and positivity. You are so right and it is all to easy to focus on the sad stories of loss and miss all the thousands of women who live long lives after breast cancer diagnosis. It is very comforting to hear about you and your friend, with lymph node involvement and 18 years and 30 years, on from your diagnosis.
I just wanted to send some positivity your way. Iām the same age as you with an 18 and 14 year old so I can relate to the fear and uncertainty that all of this brings at our age and stage in life. I finished radiotherapy in July and on tamoxifen, but Iām feeling good so far. Youāre still in the thick of it, but it will be okay. Xx
Yes I did. I did send in an email to Pals asking whether a transfer to another hospital would get me into treatment earlier, when I found out there was a 62 day nhs standard (diagnosis to treatment) target, but it didnāt help me. My consultant said the delay was just unfortunate and it was a trust wide delay, but that I should be reassured that my two tumors were small and idc grade 2 pr/er +, her2 -, so unlikely to have spread in the timeframe. The start of my treatment was 122 days from my diagnosis, so double the target.
I donāt really know, but from this forum I feel like that is quite a long delay compared to most (but maybe thatās wrong). I accepted what the consultant said, and felt like I was making a fuss. Anyway, the same consultant had to tell me it was unexpectedly found in my lymph node and that heād moved some other poor ladyās surgery so that I could have the axillary clearance in 2 days time. I just felt like they were trying to make up for lost time. I think the saying āclosing the stable door after the horse has boltedā, best describes how I feel. I hope I am wrong though x
This is a tough one for me because I donāt want to make you feel worse for something you had nothing to do with. The delay was NOT your fault. But itās also inexcusable and does matter statistically. There is no telling if that delay was responsible for node involvement but the fact that theyāre now moving quickly tells you that they are thinking it could be and donāt want to make any further mistakes. However, as much as I hate to read you had node involvement, it was only one. And it seems theyāve corrected themselves which at this point is all you can expect. The chances that you will still end up NED at the end never to hear the word breast cancer in relation to yourself is still great. But I would advise you to not accept non optimal delays any longer without a fight and maybe research a bit on this site to have an idea on what good treatment should look like. In other words, no more mistakes from your medical team. And good luck!!!
Thank you @Kay0987 for your reply. I do appreciate it. I have felt powerless throughout my experience to date and though I feel that I have advocated for myself, it has not helped me get treatment quicker and if anything, I just came away feeling more helpless and seen as a complainer.
I have no idea if my experience with delays at Peterborough City Hospital is normal, but the BC team certainly made it feel as if it was and talk constantly about North West Anglia Trust wide delays. I had thought that maybe my treatment was delayed to allow other women with larger or more aggressive tumors to be treated earlier. But again, I donāt know if that is how it works?
I will never know if the delay has allowed my cancer to spread to my node. I hope it hasnāt spread further than the one. I will find out in the 14 Oct when I get the results to my axillary clearance.
A small correction to my earlier message, the 62 day standard is from GP referral to treatment (not diagnosis to treatment) and that is what was 122 days for me. I just wanted to correct it in case anyone else read this who was experiencing delays, and my error misinformed them.
Dear Jenny
Something my consultant told me is even if cancer was not in lymph nodes it could find its way around the body so, in a strange way, having a full clearance is a good thing as at least we are taking steps to prevent the blighters spreading. Stay positiveā¦ they develop new trreatments and cures every day!
@jenhopeful I know the worry your feeling. The direction of treatment changes if the cancer status changes and it can feel like a real blow when something unexpected crops up. Donāt give up hope. I was in the very same situation last year. Full right mastectomy. ER/PR + HER2- until that point my armpit had shown clear in all my scans but the surgery found 2 out of 3 lymphās taken were positive. My consultants advice was to treat it with radiotherapy to chest wall, collar bone and armpit. I had 15 rounds condensed into 5 super blasts. Also chemo as a standard belt and braces approach. The most effective treatment for mine which was slow growing & not agressive is the hormone therapy. I chose to be put into menapause. Have ovarian function shut down so I could go into Abemaciclib and letrozole as long term treatments. I was 47 at the time with an adult daughter and small grandchild. A year later Iāve adjusted to life on the meds. There are some side effects but not debilitating. Iām back at work after a phased return and just about to start back full time. My hair grown back into a short cropped style and life is getting back on track. I know everyoneās situation is different but I hope this gives you some positivity to know how others with the same diagnosis have come out the other side of the tunnel and there is light. Take care. Much love to you xxx
Hi, Iām the same age as you with 2 kids (13 and 7) and a similar story. Thought to be small and no lymph nodes but I ended up having 2 positive nodes and quite a lot of dcis. A difference for me is that I was also BRAC positive and so had a preventive bilateral mastectomy. I was diagnosed in October 2023 and had my first surgery in Jan 2024.
The point you are at was the worst point for me, just feeling it was all so much worse than I expected. Itās now nearly 2 years on and things are much much better. I had radio but no chemo as I took part in a trial which tries to determine which patients with a small number of lymph nodes (under 9) and early stage hormone positive tumour can avoid chemo. I am on tamoxifen and ovarian suppression and managing fine.
Feel free to PM me if you want to talk or message over WhatsApp. A lovely lady on this site did the same for me when I was at your stage and it really helped.
Thank you @sap1981 for your message. Itās so helpful to know about other similar scenarios, especially as your wait for surgery seems to be similar to mine. It makes it feel less frightening. I really appreciate it and glad you are doing so well 2 years on x
Hi Jen, yes same thing similar happened to me. early Jan 2023 I was told I had a smaller tumor that could be removed with a breast saving procedure or mastectomy. Unfortunately, based on that info I went with the breast saving procedure. Come to find out after surgery the timer was almost 6 cm and would have to have a mastectomy after all. It was scheduled for a month later, then got cancelled because my surgeon had covid. It was then pushed to mid March, 3 months after original diagnosis. They removed 20 lymph nodes. 16 were positiveš„; going now to stage 3C and aggressively treated as stage 4. I went through 5 mo chemo, radiation, hormone therapy and Verzenio, a chemo pill for 1.5 years as of now.
It was a shocker to say the least. I have done my best to stay positive throughout, sometimes think Iām an ostrich with my head in the sand.
I pray yours ends up less, but want you to know that Chemo and radiation all seemed to go by, before you know it, and my symptoms werent as bad as it might be for others; the worst was just so tired and no appetite so lost 50 lbs. I didnāt have small children, so hope you have a good support system.
We are all here for questions as you go through your journey. It makes me feel better listening to others who have had a lot of positive lymph nodes that worry was been there for me and gives me hope as well. I have a CT scan coming up in Nov and will keep positive. After listening to others, there are so many warriors out there and positive outcomes to pray for all of us.
Thank you @lb_hopeful for sharing and you are right it does really help to hear others stories. It makes it feel less frightening. What you have gone through sounds tough and I am glad that you are coming out the other side of treatment. I wish you a clear scan in November and hope the wait is not too anxiety provoking x
Keep the spirits up! I was a bit like this lymph involvement down the road despite an initial positive prognosis following an mx. I had the axillary clearance, the chemo (ACT) managed to keep my hair thanks to Cold cap (and with Daniel Field products) and then had the rads and am now on preventative treatment having had a few clear tests a year later (and feeling like myself).
For sure itās a rollercoaster and the hardest part of all is what you are going through now, the waiting. Make sure to take someone to your appointments as diff people hear different things and itās hard to take everything in.
Some of the latest drugs are achieving great results so try not to think too far ahead. Wishing you the very best.
