Just wondering if anyone else has had any similar experiences,
I was Dx in April had to have 6 x FEC for invasive lobular chemo didn’t shrink tumour at all and had mastectomy 2 weeks ago, since finishing chemo cancer has spread to nodes in armpit and also 2 weeks ago found out it had spread to the lymph nodes in my neck, has anyone else had this happen. Surgeon and BCN can’t explain why it has spread so close to finishing chemo 7 weeks ago. Have follow up appointment with team on Wednesday to see what it next step of treatment once they have results of lab tests on nodes removed from armpit and tumour. They will then decide what to do about my neck.
Going through crazy time thinking I was heading for my last hurdle of 5 weeks rads, then this comes along and moved the finish line a little further away,
What bad luck Nikki! One of the reasons they use chemo prior to surgery is sometimes to shrink the tumour before op,but another is to see if that particular chemo is effective for you. It looks very much in this case as if FEC was not the best one for you. I had considerable spread into the lymph nodes in my neck, collarbone and around the jaw up to my ears, but some time after finishing chemo. Another chemo reduced them, but they returned again and it was at this point they found I was her2+ and I was put on herceptin which has kept them under control over the past 4 years. I am really sorry you have all this extra worry now and hope they come up with some answers for you on Wednesday.
I have spread in the lymph nodes in my neck, shoulder area and chest wall. This happened to me three and half years after initial diagnosis…about 18 months ago now.
I have had several chemotherpaies since…currently on weekly taxol. Your treatment will now depend on the kind of cnacer you have…if her+ you will probbaly have herceptin and if er+ and pr+ they may want to try hormonals. My own cancer is triple negative so only chemo possible.
I have a very unusual (for breast cancer) symptom from my neck tumours…they have damaged my vocal chords and I am currently speaking in a very hoarse, squeaky voice.
My story is quite similar to yours. In Nov 2003 I was diagnosed with wide spread lobular cancer in right breast and large ductal cancer tumour in left breast. The FEC did nothing for me either, and I was devastated to find that I was left with 19/21 lymph nodes heavily involved on the right side. I had bilateral mastectomy and radiation to chest and neck area and was treated wih tamoxafin and exestestane (Arimidex) until August this year when I developed large swelling in my neck.
Currently being treated for metastasis in right neck and upper armpit lymph nodes, 9mm lymph node behind the pancreas,and two tiny spots in the spine On 10th October received my 2nd (of 6) 3 weekly treatment of with Docetaxel(Taxotere), Trastuzumab (Herceptin)Zoledronic Acid (Bisphosphenates) andG-CSF (Neulasta). Oncologist advises Herceptin likley to be on going treatment for the foreseable future.
I hope all goes well with your treatment - do let us know.
many thanks for your replies, it helped me as “I couldn’t see the wood for the trees” think I got a bit bogged down with the shock of having it spread so quickly after chemo. Been to see the surgeon and BCN today, not much info passed back, I have an emergency appointment to see an oncologist in a neighbouring hospital tomorrow, to see when next stage of rads will start and how long, BCN told me I will be monitored closly as the nodes they took out showed no change from chemo??? and also any thing I am concerned about I have to pick up the phone…Did notice that when I first went in March the surgeon very positive and kept reasurring me I would be fine, it then went to we hope you will be ok, to today nothing mentioned…quite strange that you pick up on something so little.
Will post tomorrow after I have seen the oncologist.
Many thanks again for support from the fantastic ladies on here
Nikki
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I hope that they get you onto the right treatment to put a halt to what’s going on for you. I am no expert but it seems good they are getting you through ‘the system’ quickly. From what I am learning there are so so many different treatments out there, some of them will work for you.
just a quick update from my visit to the oncologist on Thursday, and hoping someone else has had the same to share experiences.
He told me that they had removed the tumour all ok from the breast and got a good clearance, but they had to remove all the nodes from under my arm and they not only had cancer on the inside but it had spread to the outside. He explained that usually the nodes are like marbles and the coloured bit is usually the cancer, kept within the node itself, but with me it had spread to the outside of the marble, the hope that the nodes in my neck are not effected the same way. He has started me on Tamoxifen to help and also plans to start radiotherphy to my neck ASAP, whilst waiting for me to continue with my arm exercises as still not got enough movement as only 2 weeks post surgery, and need to be able to get my arm high enough to get rads into underarm area, to attack remaining cells there. This all sounds very scary to me, but am comforted that others have been along this road and have willing shared there experiences with me. My husband did ask the what if question, as the chemo had had no effect on any of the cells and Mr straight talking oncologist, explain he can’t promise anything all he can do is give me the best treatment avaliable, as quickly as possible and see what happens.
Thanks very much for sharing your situations with me as I said before it does help.
Nikki
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Sorry you are having such a hard time. I really understand how scared you are and can only hope that knowing that there are other people out here who understand and have been through very similar helps a bit. My histology report in May 04 reported “no chemotherapy efffect seen” and showed 4 out of 4 level II and 17 of 18 level I nodes with involvement by carcinoma with extensive infiltration of the sinuses. My consultant never explained exactly what that meant - but obviously not good news. They decided against further chemo as was neutropenic with FEC and herceptin not an option at the time. However, I had rads to chest and neck, was put on tamofifen then exemestane and was NED until August this year.
Hi Pat
Thanks very much for your encouragement, I seem to have had a major wobble this weekend, tearful and not sleeping as you can see by the time I wrote this…almost like being back on the steriod buzz of the dreaded chemo, but with sore arm am not about to start any ironing or crazy housework…lol
I am still not up to speed with the terminology or any ology for that fact can you tell me what NED means?
Thanks also Dawn Jane and Nikki for you help.
Nikk-x-
Sorry Nikki, should have been more clear. NED - No Evidence of Disease. Please feel free to email me anytime you have another “wobble” - I am very seldom un wobbly myself, and perhaps we can hold each other up.
Just got my appointment for Rads planning, Mon 27th Oct…very quick will be less than 4 weeks since surgery. Onc did say he wouldn’t hang around to treat secondaries. Must get cracking with the exercises now to get the arm moving.
Hope your ok
Nikki
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The reason Mum’s cancer was picked up was because she found a lump in her neck back in February, although it took an astounding six weeks to get a diagnosis. Anyway, she’s had six months of weekly Taxol, Avastin on alternate weeks and a trial drug for the first five weeks and last four weeks (due to problems that the MHRA had to investigate, otherwise it’d have been weekly).
Anyway, her last CT six weeks ago showed that all the tumours have shrunk and were now stable with no new tumours, and only a few days ago our consultant said that it was his guess that it’d be another six months or so before they started to grow again, although nobody really knows, especially as Mum is one of the very first to have taken part in this trial. This morning though Mum noticed that the tumour ridden side of her neck was swollen. It was definitely not there yesterday, and there’s no hard mass - it seems to be an oedema. The rational side of me thinks that she’s had a cold for a few days and it’s probably no more than that, and the fact that the tissue has necrotised doesn’t help with drainage, but the not so rational is thinking yikes.
I’ll be calling the hospital tomorrow anyway, but have any of you experienced anything similar?
Sorry to hear of your mum’s waiting and complications, don’t help. I can only tell you that I found the swelling in my neck the week before my surgery, and the BCN first thought It was due to infection and the lymph nodes not draining so well, as I had recently had a cold.
I would give your mum’s BCN a ring and I hope she will be as quick as mine, with getting your mum tested and seen by the appropriate specialist.
I can’t give you much advice, but I’m sure others will be along who may be able to give some more info than me.
Keep us posted on how you get on
Nikki
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