It’s back, not even a year since I finished Herceptin.
Diagnosed in July 2007 with Her2+, hormone neg, Grade 3 ductal breast cancer when my little boys were 7 weeks old and 2 years old. Had 1 year herceptin, 4xAC, 4xTaxol, lumpectomy and WLE (12 out of 15 nodes+) and 6 weeks radio.
I found a lump on my neck last Saturday and it felt exactly the same as the enlarged lymph node I found under my arm when first diagnosed. Ultrasound and fine needle aspiration on Tuesday, results Thursday. It’s back in my supra claviclar lymph nodes and my onc says this is secondaries.
Having PET scan on Monday and getting results of that next Friday - very scared as I’ve been feeling so well lately and it’s just been there growing so could be anywhere else and I wouldn’t know!
Starting Vinorelbine for 4 months next week and will be on Herceptin indefinately.
Just wanting some advice from you lot really as I’m feeling very sad about everything really. I had such a short time treatment free and now will be on treatment forever and don’t know if I’ll be around to see my boys grow up and just very scared.
My surgeon said at the time that I had a really high risk of secondaries so I always really knew that it would come back eventually so in a strange way it is a bit of a relief that it’s happened to I just need to get on with it. But, the timing is crap - I’d only just gone back to work and my little boy is starting school and I’d been feeling so well.
Just trying to get my head around it all again.
Horrible disease. All of us want to be doing so many other things with our lives than having horrible treatment and tests all the time. I don’t know how I’m going to get the strength to face all this crap again, all feels a bit hopeless at the moment.
Oh Hannah…I’m so sorry…there are other Mums here with very young children, my daughter is grown up but I realise it must be so hard contemplating the future and having to go through chemo again with such young children. I’m pretty sure Vinorelbine will be my next chemo, when I need it…I’ve done some reading up on it and I think, I hope, it’s one of the kinder chemos.
I hope your scan goes well. I was diagnosed with secondaries 6 years ago…this is such a supportive place…you will find friendship and all the help we can give you here.And somehow you will find the strength to go forward…we all find our own way of coping and somehow life goes on, but it can feel like one step forward and 2 steps backwards at first. It takes time to get your head round further diagnosis…be kind to yourself and offload here anytime.
Take Care. Love Belinda…x
Hi Hannah11
So sorry to hear your news. Fingers crossed for test and hope the results of th test are good news…you know what i mean. My cancer returned to lymp on the back of the neck just over 3 years ago. I have now been clear for 3 years so there is hope. Only normal to feel scared.
Keep us informed on how it goes
Lots of Hugs
So sorry about your secondary diagnosis. I have children of 7 and 10 and have had bone secondaries for 2 1/2 years. I know how anxious you must feel and hope that the PET scan results are good. I had a bone and CT scan today so I too am on edge, wondering what the results will reveal (having had some bone pain for the first time since diagnosis, I know that there must be some progression going on).
Try to put it to the back of your mind and enjoy your weekend.
even though i have been diagnosed with secondary brain mets, i don’t know what to say. Its ok and natural to be scared though I go in and out of it, but it must be so much harder with young children., mine are older. I am thinking of you and hope you get some good news soon.
I am sorry that you are having to cope with this at a time when your children are so young, you must be absolutely exhausted as well as everything else. I can remember how scared I was only a month or so ago. My daughter is 18 but I could only think about her and how this would affect her.
I hope that you will start to feel a bit less scared very soon and have good test results.
I understand how you are feeling. My breast cancer was very locally advanced when I was diagnosed and I was almost relived when 3 weeks later I was confirmed with secondries to my liver - at least I knew. I’m currently NED but obsessing about what’s next. I have two small children too, 4 and 18 months.
Oh Hannah, I’m so sorry to hear your sad news. My heart breaks for you. Being told it has returned when we hoped we had kicked this horrible disease is devastating. And so soon after treatment has finished too, you were probably only just getting your head round to ‘getting back to normal’.
I was diagnosed when pregnant with my only son (he’s now 7). And diagnosed with secondaries in 2005, 2 years after treatment had finished.
I so hope that your PET scan produces the best results possible and that the spread is limited to your lymph nodes. The fact you have been feeling so well is positive, often spread to organs produces symptoms.
It is a sad and scary place, as you say, but I have found the support you get from this forum to be wonderful. There are a few of us with young families so we understand the added emotions this brings.
I have everything crossed for you for the coming weeks and hope that you get the results we are all wishing for you.
It breaks my heart to read of so many younger women with young families having to worry about being diagnosed with this cruel disease.
You will get lots of support from us on the forum and I hope you have plenty of support in your real world.
Constant treatment is a pain, but if and when it is working we find a way to carry on with normal life. Take each step at a time and enjoy those magical moments with your children
Love Debsxxx
Thanks so much everyone - this is such a supportive place and I feel very lucky to have all of your help.
Been going through the gamet of emotions - very sad and tearful on friday and just wanted to fly off to barbados and refuse any treatment and see what happened. Yesterday I was really angry all day and didn’t want to talk to anyone or I’d bite their heads off! Today, I feel ok and just want to get on with things really. I remember feeling quite safe on the herceptin before and so herceptin is going to be my friend forever now and I think this chemo is a bit kinder than the ac and taxol I had before, so I feel better about that too.
I’ve also decided to only tell select people as I get so fed up with everyone asking about my health all the time - I’d rather talk about my gorgeous boys or the weather!
Lupin - hope you don’t mind, but I’d love to know a bit more about your story and your treatment? It does help to hear similar stories and outcomes and how you are doing?
Linda - please let me know how your scan went.
Georgibella - I know exactly what you mean about being almost relieved when you hear secondary diagnosis, I felt the same as I knew it would always happen so now it has, I can just get on with it. Really good to hear that you’re NED, what treatment have you had and do you have any ongoing treatment? I think I read on another thread that you breastfed your kids and weren’t taken seriously when worried about lump because of that and I had same experience. I was fobbed off when found lump when my baby 2 weeks old, luckily I persisted and kept going back (thanks to my husband making me!). Is your eldest starting school this year? George is going tomorrow for just an hour, then starts properly tuesday morning - I’m very excited about him going as I know he’ll have a fab time with all his little mates.
Bex - Debs - Julie - Bubbly - Belinda - thanks loads for sharing and support.
Will get PET scan results on Friday and will let you all know how that goes - thanks again for being there.
Hi hannah
Got the house to myself for a while so now able to tell you about my story. 5 years ago found lump close to rib cage…the usual went to doctors and it turned out to be breast cancer. Due to the position of the growth had no choice but to have my whole breast removed. Had bone scan, xrays bloods. My cancer was low grade no lymph infected. So i only had rads after breast removal. I was told i was in the good group…if there is one with bresst cancer and given taxomifen.
The tamoxifen enlarged my womb to the size of a 12 week pregancy and lots of pain and going to the toilet. I asked before i had my womb removed about having my ovaries removed, the oncol sat on the fence and said it was upto me and the breast nurse said putting myself into an early menapause was not a good idea with the risks to my bones etc. Against my better judgment i left my ovaries in my body.
Under two years later i found a lump in the back of my neck…i had twisted my neck like you do and found it. Mentioned it in passing at my check up but thought no more about it but they wanted me to have more test.
So back on the treadmill for test and bugger me it was back and had crossed the body to my right side. (I was told this was unusual)
So this time chemo and then rads on my neck and my ovaries were zapped as well. Went on arimedex first but was in a bad way…could hardly walk etc bone aches now on aromisin and much better. I have now been clear for 3 years but know that it will be back. Having secondary in your lymph nodes is no really the best place to get.
My children are a lot older than yours but my youngest is now 16 years old so at 11 when i first ahd my cancer was old enough to know what it could mean. My poor daughter was taking exams the second time i had cancer and dropped out because she could not keep her mind on her studies.
Now have ashma due to chemo treatment and thinning of the bones…but not taking meds for this, my choice, facial hair (looks wonderful thank god i am light colour hair) and a blad patch on the back of my head. BUT I AM STILL HERE.
I know what you mean when it comes back…you ask yourself stupid questions like “Why me, what have i done to wrong to get this awful disease.”
Even though i am clear at the moment i feel like a walking time bomb that could explode at any time. I have just had my 3 month check up and asked to be seen in 6 months. Trying to focus on my life at present and making the best of the time i have without treatment.
Some how you will find the strength to go on you will do it i am sure and it is alright to feel down and like crap it is normal.
Use this site to have a rant ans get it out of your system and there will be loads of people here who will be able to help and tell you their stories.
Keep in touch and loads of hugs
hannah sorry to hear your feeling so anxious at the moment, your head must be in a spin. young children use so much of our energy without dealing with this. you talk about having perminant treatment, have you been told that? i found sometimes its hard to wait and see what the hospital says and we start making presumtions. i thought i would be having treatment all the time, i have secondary cancer in the bones, but i just have to take tamoxifen, and bone strengthening tabs. i do realise one day i may have to have other treatment, but for now im chosing not to look towards the future, because that is what scares us, and sometimes it doesnt even happen that way. i really hope you have to have minimal treatment, and they can hold this at bay. im sure your an even better mum because of this, you probably make the most of the time you spend with your children, where as some others always think, tommorow we will do this and that. and the moment goes. take care, x
Georgi (my eldes) is at nursery class - she just misses this as her 1st year in primary as she is 4 this month. She would have been a George if she had been born a he!
I was dx with primary last sept and secs to my liver last Nov. 4 x EC, 2 x tax before switching to 2 x taxol (I’m allergic to tax!) good scan reults at end of chemo lead to Mastectomy and rads. 8/8 nodes affected from post op pathology. now on Tamaxofen and Zoladex and last scan was clear. Very anxious of what’s happening where - I’m just working on trying to enjoy the moment and let tomorrow take care of its self. And remembering what I can’t control I shouldn’t worry about cos I can’t change it only how I deal with it. My back’s permanently tense making it sore which self perpetuates then in to oh no, its in my spine and I have one heck of a vicious circle going on!
I do hope your PET Scan results are good. I’ll look forward to hearing, hopefully it will be good news.
thanks everyone, it really helps to hear everyone’s stories, esp if similar to your own, don’t know why but it does!
had pet and ct scan today, very thorough, was there 3 hours! hate being back in the system though, hate being a patient and now can’t cuddle my boys - my hubby has them playing in the garden while i hide inside being all radioactive - crap
feeling sorry for myself again
phoned my boss today to tell her and to say starting chemo and herceptin friday and getting scan results and she said - will you be in monday then? i do want to work through if i can and well enough but think i need a couple of days to get my head back together first!!
anyway - rant over
georgi - i think that’s the hardest thing to learn to deal with, the thoughts that it might be here, there and everywhere and there’s no way of knowing or controlling it at all. I was pregnant when it first arrived and you’d think that is when your body’s at it’s healthiest! and i’ve been feeling so well lately and then this?? so it’s scary.
everydaymatters - i know i’ll be on herceptin indefinately as i was told that but i think i’d assumed i’d be on an off chemo forever and that might not be the case now i see and have read everyone’s stories.
lupin - thanks for that, it sounds like your cancer is strongly hormonal which is different to mine as i’m hormone neg so can’t have any hormone treatment, but will have herceptin instead. but i’m intrigued that you had rads to your neck as my onc didn’t mention that at all, will ask her on friday. that is brilliant that you’ve been clear for 3 years, very inspiring
now the scans are over - i’m focusing just on my boys until friday and cancer can f** off!
Hi Hannah and everyone,
I am so sorry to hear of your recent secondaries diagnosis, Hannah, but as others have said, there’s lots of support from the lovely ladies here.
I was diagnosed with primary bc in March 07, and secondary spread to my liver a few weeks later. I had Taxol over about 8 months (complications!), and have been on herceptin ever since. I had radio frequency ablation (RFA) to my liver in March this year, but that was really ‘belt and braces’ as my liver tumour had shrunk significantly from the chemo and herceptin alone.
I’m on herceptin indefinitely and tamoxifen till I’m past the menopause.
My kids were 17, 15 and 9 when I was diagnosed, and I really didn’t expect to be here to see my youngest through primary school, but I have just ‘enjoyed’ buying the new school uniform and seeing her settling into secondary school.You feel like it’s the end of the world, and yes, I recognise that yours are very much younger than mine were, and still so dependent on you, but gradually I have gone past those landmarks that I didn’t expect to see, so i hope you are encouraged by that. Also, herceptin is a wonderful thing.
Sending you a big hug. Let us know when you get your results,
Jacquie x
Hi Hannah and all
so sorry to hear about your diagnosis - you must still be reeling from it all…i was for months …and sometimes still am … a year later …waiting for results is really hard too…so thinking about you this week and hoping things go ok for you on friday…jayne
Tell your Boss to get lost…
I worked through both sets of treatment and got no thanks at all. I wish now that i had taken time out. God forbid when it comes back next time…not a chance i will be dragging myself into work.
You spend time with your boys and getting through the treatment.
YOU ARE THE MOST IMPORTANT PERSON IN ALL OF THIS.
You must put yourself first and your family.
Keep in touch
Sorry to hear your news. Just a thought but when I had a regional recurrence to the supraclavicular nodes in my neck I first had surgery to remove the nodes then chemotherapy and Herceptin and then radiotherapy. Maybe worth asking about surgery and radiotherapy when you go back to the hospital. Hoping for good scan results for you.