I’m struggling here. . I was diagnosed with Invasive Breast Cancer her 2 , P+ E+ positive.
I had docetaxel carboplatin and ohesgo and straight in for a single mastectomy and a couple of lymph nodes out. 1 came back with a 4mm Metastatic spread after chemo and 3 weeks ago I had a full clearance. I’m scared as I have had previous cancer and am limited to what treatment I can have. No radiation or certain chemos. The type I have had a strong chance of recurrence. I’ve waited 3 weeks for the results of the axillary clearance. I was just wondering in the letter i received after the mastectomy it’s saying Metastatic spread to the lymph node. The word Metastatic is scaring me . Can you share your stories or put my mind at ease. Does this mean the other lymph nodes will have cancer? If so what treatment and tests did you receive?
many thanks in advance xx
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GillyGangGong
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HiI read your profile. You've been through a lot ... more than most on this site. I think you've coped well and you should be proud of yourself.
It sounds as though you had metastatic disease in one lymph node that has now been cleared through the chemo. If it was in other lymph nodes that would have been found and included in your scan report.
Though I'd advise you to contact your breast cancer nurse or oncologist to clarify.
If you weren't anxious after all you've been through you wouldn't be human. Be kind to yourself but also try to find ways to keep the anxiety under control so you can enjoy life with your family. None of us know what is round the corner but spending time worrying about it serves no purpose.
I'm sure others on this site will reach out to you too. I always have to remind myself there's a time difference between us in the UK and those in the US
Thank you yes I’ve been through a lot. I still thankful for the little things and of course the support from my family and strangers. I had when I was diagnosed, there was no lymph node involvement as far as they could see, so they started me on chemo first I caught the C.Diff bug so they stopped the chemo after 3 as I had non stop stomach issues let’s call it.
They said let’s go straight to surgery, they took 2 sentinel lymph nodes one had a 4mm metastatic spread so 3 weeks ago I had a full axillary clearance. Very painful more so than the mastectomy. Anyway I get the results from that on Friday. The thing that’s bothering me is the letter I received from the surgeon saying 4mm metastatic spread. Does this mean it’s maybe spread to other parts of the body?
Thanks for the lovely reply, I guess I’m scared of Fridays results xx
Oh lovely lady I can empathise with you on having to deal with such serious health issues over such a long time. It puts me to shame as I've 'only' had 5 years of living with one cancer (though I also have a rare metabolic disease which is a dam nuisance).From the extract wording you've stated it doesn't say its spread elsewhere. I can't say any more than that.
So re Friday. It could be good news or bad. Maybe you could focus on writing down your list of questions for each scenario?
I don't know if you're already being seen at one of the top cancer hospitals but as they see the most complex cases it might be worth getting a referral for a second opinion on your case (assuming you haven't done this already).
Aw thanks for the lovely reply, In my eyes suffering is suffering no matter how long and how much you have suffered. I understand it’s complex at times I’ve felt the oncologist didn’t care or they haven’t a clue. Say I have another positive node. I’ve been told they will be offering 15 kadcyla if not it will be another year of phesgo. I’m unsure how I feel about having just the phesgo as I can’t have the usual regimen of radiation to mop up any stray cells. I’m going to be anxious either way. Plus I can’t help but be angry with the hospital giving me C.Diff infection which is for life. Although it’s not active at the moment. I was supposed have 6 docetaxel + carboplatin not 3. despite my protests to have another after the c diff was treated. Plus I was supposed to have DIEP flap surgery after. They just stopped it and decided that the week after I would be having a single mastectomy. I was devastated, still am as I could have been healing from it by now instead of the axillary clearance. Thank you for letting me get that off my chest. Xx
If you don't trust the people who are managing your treatment perhaps a second opinion would help. I'm on continuous chemo... every 3 weeks. I was on Kadcyla for at least 18 months then I progressed. I had very few side effects (mainly muscle aches). I'm now on Enhertu (since July) and the disease cannot be seen on PET scan or brain MRi. I will add that after 2 cycles I told my consultant I couldn't continue with Enhertu as I was feeling so nauseous even with anti sickness tablets. She cut the dose to half.
To echo the words of other replies...metastatic disease is not the end of the road.
I had metastatic disease from the start: lungs, mediastinum, liver, spine and brain. It was all cleared then I relapsed in the brain, next relapse was brain and lungs and the last time brain, lungs and liver.
The 3 treatments on my brain were one lot of fractionated brain sparing radiotherapy and two lots of Gamma radiation. And I think you'll agree I am still very alert!
If/when it comes back in the brain I'll have more Gamma radiotherapy as long as its within certain size limits. So I look out for any signs... usually this has been my foot dragging intermittently. At that point I call the hospital, report the symptoms, push for an urgent brain scan and then chase the results and liase with the Gamma team direct to ensure I'm on their radar.
I haven't had or heard of the other chemo option your consultant is considering so I can't comment on that.
So in short girl, you may be with us for a while yet !!
wow I’m so sorry, you’ve been through all this and going through it constantly.
I feel I’m worrying more than I should be now. I just wanted then to throw everything they could at it. It’s hard because it’s always in the back of head I can’t have anymore radiation due to having total body radiation when i had a bone marrow transplant aged 20 for leukaemia.. they say the body never forgets. Neither does the mind..
you are very alert and very brave,thank you for sharing your story. I’m at the oncologist tomorrow to find out my results from the axially clearance and emotions are running high. but you have helped xx
Metastatic just means somewhere other than the original cancer in the breast. It certainly does not mean it is all over! Sounds as though your spread was just to one lymph node, and that has been addressed.
Certainly must be a shock to suddenly find yourself uni-boob -- but as I understand it, DIEP flap surgery is much more invasive and requires a longer hospital stay. You have enough to deal with, and your body does.
I am not sure what your meds are. We usually start with some sort of estrogen suppressant (fulvestrant or an aromatase inhibitor -- pills) and a targeted treatment. But you just had the mastectomy, so chemo is the typical follow up.
Have you had a PET or CT or PET/CT (best) to look at your whole body? Perhaps you are not there yet.
Hello Tammy, yes C Diff wasn’t picked up at first they thought the stomach issues was caused by the chemotherapy I was having.
I wasn’t treated for 2 months so they don’t actually know what caused the stomach issues as they stopped the chemotherapy. I was told there was no lymph node involvement, I can’t help but wonder if the lymph node spread was due to stopping the Docetaxel regimen. I suppose I’ll never know.
I get my results from the auxiliary clearance tomorrow so will find out what the next step for me is. I’m told I will be taking a tablet for 10 years. I will ask about a CT scan or pet scan to see if if there’s any further spread. thank you for taking the time to reply. It was just the words metastatic spread that has me worried. I’m told that some of the tumour cells break off and metastasis into a solid tumour? But yes this was taken out when I had the mastectomy., Thanks for taking the time to reply xx
I'm just jumping in here to say that when there is a very smalll amount of cancer it's hard for them to see if anything is there , and that's why they take out a couple of lymph nodes and put them under the microscope. There's a high chance it was there all along so I'd try not to spend time worrying what might have been had treatment proceeded as planned. I'm very sorry that you've been thrown into the deep end with all the plans changed.
If you had a lot of lymph nodes in the axillary removed try to read about how to care for your skin and arm to avoid possible issues going forwards. And it obviously isn't what you wanted with the mastectomy surgery but really the DIEP takes a long time to heal and can cause other muscle issues too, so in the end you will have a lot less to deal with now. I have only one boob and am happy with it. I am small so I can pop a small prosthesis piece into my regular bra. There's quite a lot of options out there for pieces and bras, so know that's something you can look into doing.
There's also a lot of options for treatments these days besides chemo for breast cancer. Can you get a second opinion if they are not really including you in the decision-making and giving you empathy? I wish the best for you going forwards!
Hi thanks for the reply, I had 2 sentinel nodes removed along with the mastectomy,it was a 4mm macro metastasis and couldn’t be seen in the scan. Before chemo
I understand that the good news is after 3 lots of chemotherapy the tumour had disappeared and nothing else was found apart from the 4mm tumour. I will know tomorrow morning the results of the full clearance. And hopefully a treatment plan. I am doing the exercises and using moo goo on the scar. They say the waiting is the worst part. Xx
Hello! My name is Kim, 43 with MBC ER/PR + spread to almost every bone in my body. I too had 4 nodes removed with 1 small spread and a report that said the same thing Metastatic spread to lymph node in GIANT letters on the top of the report. That was in May 2020 and almost every Petscan since then reads No evidence of active disease, so take a deep breath and tell yourself you are OK. They got the darn thing out of your body. Stay strong! We all got this! 😘😘🥰
yes the report that’s what has happened to me. I was just going with the flow regarding treatment. I’m so sorry so you have cancer of every bone but no active disease? I haven’t had a scan of the body just the boobs. I get my results tomorrow from the clearance, hopefully there is no further spread. I have invasive her 2 E+ &P+ I will let you all know xx
So sorry to hear you are going through this. The first thing my surgeon said to me when I was coming out of my mastectomy surgery was, “We found cancer cells in 12 out of 16 lymph nodes.” That was a major letdown! That was almost 9 years ago now. I’ve got lobular and ductal and 3 years ago the lobular showed up in my stomach. With a great doctor and proper medicine, you can still have some quality of life. Try not to panic. One day at a time. Good luck to you!
hiya - I had a tiny ductal in one side treated with radiation and a huge lobular in other breast which required two ops incl total axillary clearance (19/34 positive nodes) and that was far more traumatic than mastectomy but 3 years on is now a distant memory. It’s amazing what you get used to even a single 38G breast! I was initially given chemo but quickly changed to metastatic treatment (cdk4-6 inhibitor palbociclib ) which seems to keep everything under control and is very easy to live with (for me & most folk). Hope you get treatment settled and can go in with your life despite all the previous trauma.
Thank you. I understand about having a big bust I’m a FF & 53 so you can imagine the difference. Aldo the mastectomy was a breeze compared to the Axillary clearance. I’m still in a lot of pain but it’s only just over 3 weeks. I’m sure by this time tomorrow I can at least move forward and have a treatment plan regardless of the results. Thanks to the positive answers to my post. Seems everything is treatable xx
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