Hi all, this is my first time posting. Been looking for some reassurance so my nurse recommended this forum and I must say, the posts have been giving me comfort.
This isn’t my first rodeo, I was diagnosed with Hodgkins Lymphoma in 2004, which is a blood cancer of the lymphatic system. Due to the severity of my treatment plan I have been on checkups every since and mammograms for the past 7 years.
I felt really poorly during the first lockdown and was self isolating as I was in the extremely clinically vulnerable group. My mammogram was put back a few months so I went in the end in early September 2020. The mammograms showed a lump and I was diagnosed with breast cancer in October 2020. It looks like it was caused by the mantle radiotherapy I had from my previous cancer.
Due to the new diagnosis, the position and my high risk I had a double mastectomy on the 25th November. I have had a few problems and am still having treatment for an infection. Due to COVID, biopsy results just seem to be taking an age!
I went for the results yesterday and was told that 2 out of the 5 nodes they took have cancer present so I am now waiting for a CT scan, bone scan and an axillary clearance…not the best start to 2021 when I hoped all surgery was over. Hospital is such an awful place during COVID and lockdown…my experience in November was awful! I am treating is as a set back and not a disaster but deep down I’m pretty scared and just pray it hasn’t spread.
Due to my previous treatment, I can’t have any radio therapy and they are reluctant to give chemo again if they can help it as I had a very aggressive form last time. I know I will be having hormone therapy/ treatment after but my consultant said we would discuss the treatment plan after the scans and additional surgery.
If you have cancer present in the lymph nodes is it always bad? Just not enough information out there! Thanks for reading
Hello, I’m sorry you find yourself here after all you have been through, but there is lots of support here and people to cheer you on. You’ve done it before and you can do it again if need be! No, it is not always bad if in the nodes, but it does mean your team will be extra thorough with scans etc to make sure. I’ve had mastectomy and lumpectomy in the past, nodes thought to be OK, then 2 years ago I had lumps in one armpit so needed full axillary clearance. The cancer had not gone any further and I’ve had ct scans to check for any spread and always been clear, the last one was before Christmas and I had the good news this week. I did have chemo after the axillary clearance but it was not absolutely necessary and I had a choice, which being otherwise in good health I decided to take, but it is always a balance and you may not need it. It may well be those nodes have done their job catching the cancer and surgery and hormone tablets will be all you need. It is such a hard time for you, but try to hang onto the positives. Very best wishesto you for the rest of your treatment. Love Mo xx
Wanted to reach out and tell you you are not alone - my story is so similar! I had Hodgkin’s back in the 1990s, and yup, almost certainly the radiotherapy that caused my subsequent breast cancers. I’ve been on annual MRIs, and tamoxifen, also unable to have more radiotherapy and chemo would be tough as I’ve done it twice before. So, this week was finally the mastectomy. I’m also getting bisphosphonate infusions as a chemo alternative/just in case kind of thing.
Lymph nodes aren’t necessarily a bad sign, but as said below, will make them super cautious. Which is good! I always felt very reassured by the tests.
I’m sorry you can’t quite avoid hospital for now, but my fingers are crossed for those results for you xx
Hi cookie365 - a big welcome to this lovely forum from me too, I’m so glad your nurse suggested you come on here but I’m very sorry you have had a BC diagnosis as well as your previous treatment. You have already had some great advice and reassurance from BluebellTime and bookish and I agree with all that has been said.
The waiting really is hard isn’t it, but do keep in mind that the nodes are there to catch any stray cells. I had a mastectomy and node clearance about 3.5 years ago, so happy to answer any questions you might think of. Try if you can not to either google or let you mind run away and imagine the worst. I have a good book that reminds us that “fears are NOT facts”. Come back and chat any time you need, sometimes it’s easier to chat to people who have been through it and just “get it” without explanation. Sending you strength and hugs. Do keep in touch and let us know how you get on. Evie xx
I’m so sorry you’ve had to join us. As I know myself, you will have amazing support here.
I am hot off the operating table for a mx and ANC. ANC because I went to my GP with a lymph node lump in Lockdown 2.0 No way at all would I have found my 2 lumps discovered at clinic - one 20mm BC, one just well iffy looking tissue with a few free (+ another world I can’t remember) cancer cells, that one didn’t show on mammogram at that first clinic.
My CT scan - needed because it was in the node proved 2 nodes have BC cells in and no spread elsewhere. So those little babies were doing their job and stopping it spreading to other parts of my body. Although being in the nodes it showed the BC was moving.
If it helps anyone… hand on heart, I’m 7 hours post op and not in pain. I do feel like I’ve over done a pec workout in the chest side of my armpit and then I’d say only the area of that ache is the diameter of a small satsuma. I will keep on the painkillers!
I hope that helps a tiny bit. x
Excuse any typos - bit dozy from anaesthetic still. Bed calling me!
gosh you are going through the mill somewhat! Rodeo is a great term but not a great ride, I’m in the ring too. I haven’t had NHL - my ex has it at mo so my kids have 2 parents with cancer. Breast wise we are kind of similar, I had a lumpectomy for an 18mm tumour but invisible (hmm great, who knew that was a thing?!) DCIS of 32mm so my margins are rubbish and I have a positive sentinel node. Now having another lumpectomy and full node clearance (Tuesday). I have a ct scan today and like you I am beside myself about spread. It’s all I think about, well utter panic might be more truthful. I know the stress will change nothing so just got to plough on but my goodness it’s hard
I’ve been told that presence in lymph does not necessarily mean further spread lymph nodes are our friends and they do their job of “catching” nasties… fingers crossed for both of us x
i notice your post was a few weeks ago so please let me know how you are and what’s next
