Its back after only 4 months
Its back after only 4 months Hi
I only finished treatment 4 months ago. A couple of weeks ago I found some red lumps on the area where I had my mastectomy and radiation treatment. My doctor immediately sent me to the hospital where I had a biopsy and this showed that the cancer was back! I now am about to start on a course of Capecitabine. My consultant told me that I was called triple negative thats why I can’t have any of the ‘wonder’ drugs that are available. I am off for a C-scan and Pet scan today to see if it is anywhere else.
I feel fine, I have my hair and energy back and now suddenly after such a short time I have to go back to chemo.
The thing that really upsets me is the effect on my boys. I have yet to tell my youngest as he has not been around and I don’t know how to tell him. My husband is in a real state of shock but being very loving and supportive.
The other problem that is giving me sleepless nights is, is this it? Am I going to survive? I am really frightened. Is there anyone out there with the same problem?
Hi Ruth So sorry to hear your news. I haven’t had this kind of recurrence, but I’m pretty sure others on the forums have. I do hope they see this and can help you from their experience. Good luck with the scans today and I hope the new chemo really works for you.
Kathy xxx.
I’m in the same boat Rather like you I finished chemo for the second time in April, my hair has been very slow togrow back and is now about 1/2 inch. About 10 days ago I found new smalllumps on my supraclavicle nodes above the collar-bone. Unfortunately my oncologist who I see privately is on holiday, so I saw my surgeon last Wednesday who implied he thought it was back and ordered a biopsy by ultrasound which is to-day and I hope to see my oncologist on Wednesday evening. This is the same place it came back last time after 4 years so I am very frightened. I am also negative so can not have any of the hormone drugs, but familyall around for my birthday this week-end and very supportive.
Back after 4 months too Hi
Just thought i would share my experience with you.
I finished chemo (epi - cmf) in Feb this year and on a follow up appt with my oncologist in June he found an enlarged Lymph node on my collar bone.
I was also had an ultrasound and biopsy and it confirmed that my cancer was back just 4 months on from finishing chemo also. Since then i have had the supraclavicular lymph node removed and my path report shows that there was infact 3 nodes all with cancer in them.
I have started chemo again 3 weeks ago for the second time - i am now on Taxotere and have been taken off Tamoxifen as its not working for me ( i was ER+ PR+). I will also have to have more radiotherapy, zoladex and arimidex.
Its a scary time for me also as i feel let down by the first set of treatments and has left me wondering just how aggressive my cancer is that it has come back so fast. I also have felt that it was worse being told its back than the first time round, i guess its because we now now whats involved with treatment, but i am determined that i will throw anything at this cancer to try and beat it - got far too much of the world to see and lots to with my life yet!
A good friend of mine recommended a book called Dr susan Loves breast book, which i have found to be really useful and and has helped “get my head” around this. I dont know of you have already read this, but just thought i’d suggest it.
Wishing you all the very best with your treatments and keep us posted on how your getting on
Jakki
xxxx
Hi Ruth,
That is really tough when you have just been thru treatment to find you have to go there again! Don’t despair - most of my story is in my profile but I had first dx in 1990, then another tumour in 1996 and 6 months later the same sort of recurrence you are describing, but as I had already had rads to that breast - I had to have a mastectomy and a VRAM flat to replace muscle etc. I have had other probs since as well but all is well under control - 16 years on from first dx. If you are like me then gradually the “is this its” will fade to be replaced with “why not”.
Good Luck, Dawnhc
Ruth skin mets is frightening but not so hard to deal with because when you have chemo you can see if it’s working- the spots start to disappear. I’m on Epirubicin for what’s left of mine[first and second lots excised] and the little beasties have disappeared plus the bone mets underneath [odd lumps bulging] are shrinking too. If one chemo doesn’t work it will be apparent and your onc will try another. It’s a case of finding the right chemo for your particular job. Don’t lose heart because they can be cleared up, best wishes, dilly
road works on the way to recovery hi
I know how you feel, three weeks after my mastectomy I felt another lump in my only breast left. Not good. They did a biopsie straight away and got confirmed its a grade 3 aggresive one again. I start chemo on tuesday and they will monitour the tumour during the treatment. After that i will have another mastectomy.
Life is shit and I don’t have any happy feeling, my mind is blanc and empty. I can go on and on but you know excactly how it feels like so we all have to support each other and try to get positive again and see life as something wonderful
Do you get the feeling they don’t tell you everything? Maybee I am just paranoid and want to know it all but they will never give it all away.
I’am going wig shopping this weekend with my hubby.I went to the shop yesterday and bought myself a hat. Normally I would never spend so much money on a hat (it was 20 pound!!!) but this time i thought why nnot!!! When I got home a friend had deliverd a bunch of flowers and another friend from holland phoned me and told me she was going to look after me one week after a chemo session. I had a good day that day. It really are the small things in life now that makes a smile on my face even if it is only for a few seconds but it is important to smile at least once a day and my mum always told me that it was important to laugh at least once a day but I think I stick to the smile
anyway,you are not alone. It is a long road ahead with some roadworks happening on the way.
love dutchie
Thank you everyone Thank you everyone for your support. I hadn’t realised just how helpful it was to hear other voices with the same problem.
My best friend died 6 weeks ago of BC and while I was struggling the first time round and she was fighting too, we gave each other enormous support and we spoke daily. I can now only speak to her in my head and I miss my beautiful friend so much.
However I had a c-scan which showed that it hadn’t spread which was a big relief and tomorrow I start on the chemo. Twice a day every 2 weeks. I guess I better get used to it as they told me that I won’t be cured only helped. So now is the time to enjoy myself while I can. There are places to go and people to see.
My only hope is that this chemo won’t make me lose my hair, I really love having it back. Silly really in the scale of things.
Lots of love to everyone
Best of luck with your chemo ruthp- let us know how you get on because we’ll be thinking of you, best wishes,dilly
Hi Ruth I had breast cancer 2 years ago and just found out last week that its back. I had my second chemo today, doc says that there is a lot of cancer in my breast which terrifies me. I had a body scan and bone scan last week also and they showed no signs of cancer which was a relief. Waiting on the results is a terrifying experience. I was ill the day before my results crying at the least wee thing. I nearly never went to get my results as i was so convinced it had spread.
Like yourselve i’m having sleepless nights too…same thoughts as you.
i feel i need support as well, i’ve got good friends but unless you’ve been through cancer you don’t know what its like. my friends keep telling me that I’m strong and i will beat this. they mean well but I need to chat with someone whos actually going through it.
Maybe we could chat on line sometime.
Irene
Irene, just wanted to say that I can so identify with what you are going through. My cancer came back after two years and I was completely devastated. I cried and cried before every treatment and couldn’t talk to anybody. In the end, the hospital referred me to MacMillan. One of their nurses came round to my house and helped me to sort my head out.
She was really fantastic. Gradually I was able to voice my worst fears, my feelings of being let down, my sadness every time I thought of my children and all the things that were bothering me.
I’m now a couple of years down the road since my cancer came back and have since had a recurrence. But I honestly haven’t been through anything like the dark days I went through when I learned my cancer had come back. The Macmillan nurses helped so much.
Is there anyway you might consider this route? They were also pretty good at sorting out my doctor to make sure I got the right medicines when I got cold sores, thrush etc on chemo, and arranged a disabled parking badge for me while I was on chemo.
Deirdre
those red spots again Its so heartening to read everyones messages and know we are all going through the same awful fears. All the answers to my first report have really helped me feel less alone with those pesky spots.
I have been taking the pills for two weeks now and they are so much easier to tolerate than the infusions. I keep waiting to get terrible symptons like on the taxotere I took last time. If these are what `I have to take indefinitely, I can manage, as the only thing I have noticed is being more tired and thats a relief as I am a poor sleeper normally!
I should have answered Irene earlier when she asked to chat, the sisterhood is here for us and although we must all wish it wasn’t this way it really helps to know others out there.
You do discover your true friends don’t you? The ones who haven’t got bored ringing you up to see how you are. And now we all have women from all over the country to talk to as well; I can’t tell you the difference having those replies have made.
what else you can do while you’re treated Hello.
I’m so sorry to read about your rapid recurrences.
I had a recurrence 6 and a half years after a mastectomy and 5 years of tamoxifen. Then I had an aggressive stage 3 cancer with tumours in my mastectomy scar, several more lymph nodes, with skin, nerves and muscles all affected and had a sandwich of chemo+radio+chemo. That was 3 years ago. Just giving you some background to what I say. I´ve worked quite hard at staying healthy and exercised and ate carefully, had successful intervention for lymphoedema, but I’m now 3 months into a diagnostic process that should detect where the tumours are that have increased my tumour markers alarmingly. Although my biopsy showed triple negative, I’m on Arimidex, apparently which may confer a small benefit of slowing bone mets down which my oncologist suspected I already had, but too small to detect.
So what else am I doing? you’ve probably heard of Jane Plant and her no-dairy programme. Well, the reason I’m posting in this “only 4 months later” thread, is that she also had a very fast recurrence, in fact had 4 recurrences, including in her clavicular lymph nodes and had a very bad prognosis, with an oestrogen positive cancer. She’s still here 13 years later having been given 4 or 5 months to live and has been able to see her children grow up. I have read her books and am following the advice. I’m a scientist. I’ve checked out her evidence. It makes real scientific and practical sense. The only reason it’s still controversial is because there are 880,000 dairy farmers in the European Union and even more in the USA who are bound to disagree! After all dairy products are sold on their health benefits aren’t they? You can get copies of her book cheaply secondhand on Amazon. Some hospitals give copies to people newly diagnosed.
Don’t tell me cheese and yogurt is more important than life itself. Don’t dither about it as I did for 3 years - Just read “Your life in your hands”. It may save your lives. It explains what her cancer history is and how she worked with the chemo to overcome it. The latest edition of the book has a lot of success stories in it. The programme she developed as a result and published 6 years later apparently works especially well when combined with chemo. If you want to give it a try, you’ll also need the book “the plant programme”. There’s also a support webpage with summaries on it: vmine.net/cancersupportinternational/index.asp
In 3 months of following the Plant Programme I’ve managed to slow the cancer’s progress down according to my blood tests, still rising but not as fast,and so far all my scans have been clear though the next results due in a week on 27th have got me really worried. I still have my life on hold and am struggling rather than striding through all this healthy lifestyle and diet programme, distracted but at least DOING something specific to make myself better.
I’m also taking Salvestrol, which is a supplement which you may have heard of. It’s worth a try. I’ve research what it is and how it works. It also makes scientific sense. The first therapeutic trials of it only started in May this year which is why you haven’t seen any results. If you want to try it, only the online service associated with the researchers at Leicester de Montfort University actually sells the full strength capsules and you need to talk to a doctor trained in its use. You can get more details by emailing annegoodson-at-naturesdefence.com
I don’t have an axe to grind here - I just want us all to get through this and have longer, healthier and happy lives and am sharing my approach which I hope is working and will support me through whatever treatments I need.
Life changes. Sadly treatments knock the stuffing out of us but I’m sure that most of us can experience wellbeing again. When you are going in for a new round of chemo, please do find out what to expect and do all you can to protect yourself from the side and after effects and if you’re worried if it’s going to work, ask as bluntly as you can. We are each part of a healing team and can empower ourselves by knowing the score and making choices.
May we all be well!
Jenny
the plant programme: a different perspective Jenny i’m really pleased that you’re doing well but just wanted to put a different view on Jane Plant’s programme, in case there are others reading this who don’t know Plant’s book and may not know that most (neraly all?) doctors don’t believe it works.
The evvidence on a link between dairy and breast cancer has not been proven at all. Indeed the evdidence is contradictory and there have in fact been studies which have shown the contrary to Plant’s ideas: that in fact high dairy intake can help women with mets.
Personally I think Plant’s work is very misleading. It contains some science and much anecdote. I find it alarming that a scientist can make such unscientific claims. For example she claims to have given her diet to 63 pople all of whom have lived but that the people who ‘cheated’ on her diet have ‘sadly’ had recurrences or died. (page 21 Virgin 2003 edition.) I also don’t believe that any consultant would give a patient with a regional recurrence a few months to live. Regional and local recurrences are not terminal. Doctors are always relectant to make predictions about survival times, and I think this statement is probably untrue, made for dramatic impact.
I know vegans who got breast cancer. I know women who tried the Plant diet religiously and have died, one very quickly indeed. These are also anecdotes, but I urge everyone considering this diet to be cautious in their expectations.
The best advice on diet is to eat a broadly helathy diet, with plenty of fruit and vegtables. I also believe that indlging in foods we enjoy without guilt enhances our enjoyment of life.
I understand that many people with cancer want to feel they are DOING something. This approach is not for me though. There is nothing I can DO but hope for the best and try to live best I can. I have a triple negative cnacer so there is no follow up hormonal treatment for me. I had a poor prognosi at diagnois but I am very well three years later. I’ve just been lucky. I know my cancer may return at any time…knowing this and accepting this is for me more important than pretending that trying a punitive diet will heal me.
best wishes
Jane
Thanks Jane for posting that. I was going to post something myself but I’m not as organised as you and didn’t have the stats to hand.
I just wanted also to point out that after my first diagnosis and mastectomy, I followed the Jane Plant diet religiously. And despite not cheating at all I still went on to develop a new cancer in the other breast for which I had to have another mastectomy. Disheartened after treatment for that, I adopted an “eat whatever you want to” diet. And then I managed to get a recurrence in my reconstructed breast. It seems that I am programmed one way or another to develop breast cancer no matter what I eat.
I confess I have now, once again, gone back to a no dairy, no meat, no alcohol, no sugar diet but I really don’t know whether it will have any impact on my chances of developing any more lumps and bumps. It’s more about trying to stay healthy right now. I do, however, occassionally cheat and I simply refuse to beat myself up about it because of Jane Plant and her desire to lay the burden of guilt on all of us who have “sinned”.
Deirdre
Hi Ruth I am also triple negative, I was dx oct 2005, with grade 3 ca. I had a lumpectomy nov 05, and lymph node removal 2/9 ca.
Started fec Jan 06, after 4 cycles had reacurrance, in May 06 had mastectomy, followed by Taxotere.
Had to come of after just 2 cycles, made me very ill, cons put me on capcitabine, but it didnt hold it for me, and I have another 3 tumours, around the mastectomy scar and lymph nodes.
Was recently refered to the Royal Marsden, they are brilliant, am just about to start 20 sessions of radiotherapy, then a two week break before begining a chemo called MVP, this is a platinum based chemo.
They are also doing trials, to help those of us that are triple negative. I was told that their is no cure, but im not giving up yet. The Royal Marsden had a much better approach then my local hosp.
Hope you get on ok, I didnt loose my hair on capcitabine.
Take care Debbie007
Hi Hi Jane! I remember that we both underwent AC chemo at the same time and were able to give some comfort to each other then.
I agree about the diet. I, too, have chosen to eat healthily as far as possible, but not to get too involved with specific diets. Although I have not got on as well as you in the intervening time, I’m still here, still feeling well, and still enjoying life!
I’m relying on the wonders of medical science to see me through!