Mum’s cancer back for third time
Mum’s cancer back for third time Hiya,
My mum has just found out that her cancer is back for the third time and is finding is hard to deal with. She’s 55 and was first diagnosed almost 2 yrs ago. Grade 3 Stage 2 Hormone Negative. She had a lumpectomy and chemo and radio but within weeks it was back (if it ever went in first place), Then she had more chemo which didn’t work and another lot which left her really depleted. 6 weeks ago that finished and it’s back already! Oncologist thinks it’s no longer possible to get it into remission and that it will mean chemo for the rest of her life.
It’s just such a blow for us all and hard to find the positives - though I’ve been doing my best! The tumours are in lymph nodes and in clavicle but as far as we know it’s not in any major organs which I guess is a good sign? (I’m assuming this means it’s not secondary cancer - but why is it not possible to get it into remission?)
She’s not asked for a prognosis and I’m really worried about that. Does anyone know of people who survive indefinitely by having chemo to control it?
I’ve spent the weekend at home trying to help my mum, dad and 14 year old sister to be positive but it’s just such a shock! I’m 26 and none of my close friends or boyfriend really understand the stresses and strains involved which is why I thought I’d share on here. I’m sure this forum doesn’t need another sob story but at least you lot understand!
Normally my mum and me are so positive - we’ve rarely let this get us down in the last 2 years, I know we’ll get over the latest shock and carry on, but right now I just need some support as it’s hard work always supporting others!
Skylark x
PS She’s sick of chemo and talking about stopping it and trying alternative therapies - does anyone have any success stories?
There are so many treatments these days, it seems odd the oncologist is giving up now. Perhaps it’s time to seek a second opinion?
Skylark very sad for ypu and your Mum- horrible news to get.
But if your Mum is hormone negative it has to be chemo all the way. Yes you can try a spot of alternative to find out if anything helps but whatever she does don’t let your Mum depend on it.
There are many different chemos- not all are fierce or make hair fall out. A serious chat with onc about what would help is needed and lots of people live for years with intermittent or even nonstop mildish chemos.
But this is hard to face up to in the face of such bad news so your Mum will need support and encouragement to help her cope with it and treatment. I’m sure you’ll be able to give her the necessary help to cope until she recovers her equilibriom enough to deal with it all.
Best wishes to both of you- I know how much daughters help over awful patches from my own experience- dilly
Peer Support Dear Skylark
I am so sorry to hear of your mum’s 3rd diagnosis, I understand that this must be a very difficult time for you all.
Your mum may find of interest Breast Cancer Care’s peer support service. This service will put your mum in touch with someone who has similar personal experience of breast cancer and has been trained to listen and offer emotional support. We will do our best to match your mum with someone who has experienced the issues that are most important to her, for example, she may want to discuss options for treatment, the effects on family life or simply share her feelings with someone who understands.
you will find the link below.
breastcancercare.org.uk/content.php?page_id=4438
In addition, please remember that you or your mum are very welcome to contact our helpline for confidential support, a listening ear and any information that you may need during this difficult time.
The helpline number is 0808 800 6000 and is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
I do hope you and your mum find this information of help, but please keep posting on the forums as I am sure you will receive plenty of support here.
Kind regards.
Forum Host
Breast Cancer Care
I think you need more information Hi Skylark,
I’m really sorry you’re having such a rough time.
It sounds to me that you and your mum need more information. Maybe you could get this from your mum’s present medical team, maybe it is time for a sceond opinion. It might be that because your mum says she doesn’t want to know her prognosis that this is contributing to misleading communication between her and her team, which is actually making her feel worse.
It sounds as though your mum has regional recurrence rather than distant metasteses and you are right that there is a difference. Surgery and radiotherpay are often used to deal with neck lumps and lymph nodes so you might want to check whether this is possible and if not why not.
if your mum’s cancer is triple negative (that is negative for the hormones oetsrogen and pregesterone AND negative for her2) then yes other than surgery and rads chemo is her only option.
The chenos which are generally used for triple negative cancers in this order are:
AC or FEC (or cmf-E)
one of the taxanes (taxol, taxotere)
capectibane and or vinorilbine
carboplatin (still mainly in trials)
Personally I think its very dangerous to turn to alternative remedies, particularly if they appear to promise miracles though I understand the tempation of doing so. Many people do find complimentary tretaments helpful in managing anxiety and the side effects of tretaments but this is very different from looking to unproven treatments to help cure cancer. They don’t.
I hope you can support your mum in asking for more information to help her make informed choices about continuing treatement, or at least get information so that you understand what your mum’s situation really is. Try to get some support and help for yourself too. You must feel isolated if your buy friend and friends don’t get what you are going through.
I have a triple negative cancer so have become interested in what treatments are around, but I’m just an interested pateint not an expert so check it all out. I haven’t had any spread beyond lymph nodes so this far I’ve been luckier than your mum.
Best wishes to you both.
Jane
Hi Jane and everyone else,
Thank you very much for your replies. Yes my mum is triple hormone negative which I guess means chemo is the only option- they are not keen on more radio due to position of tumours under her arm and possible nerve damage.
She’s already had a FEC chemo and taxotere (which didn’t work) and another, not sure what that one’s called.
The only vague prognosis was from a homeopathic doctor and he said she wouldn’t be likely to live as long as 10 years - which she, of course, takes as negative but I keep reminding her about all the advances in treatment that could happen in that time. I don’t think she’ll stop chemo in the near future but isn’t too keen to keep going indefinitely.
Is anyone on here going through constant or repeated chemos without hope of remission? How do you cope?
Thanks again for your replies.
shes not alone… Hi Sky lark
I really feel for you and especially your mom as i am in a similar situation…living with the uncertantity of whether the treatments are working, then finding out that they haven’t, is really hard… the only difference with me is i’m hormone positive. I have only met a couple of ladies in my situation on this site whose cancer came back so fast, so initally it was a very scary time for me…
I was diagnosed May 2005, grade 3, stage 1 BC, I had E-CMF chemo ( same as FEC), rads and then my cancer came back 4 months later - in my lymph nodes on my clavicle. So I am now stage 3. My surgeon was able to remove the lumps where they were at that stage as he need to biopsy them for further tests, I finished taxotere chemo in December and halfway through my rads, my onc found more lumps in my clavicle area. These ones are inoperable.
I am now going through more staging tests (bone scans and ct scans) to see if i have further spread.
JaneRA’s right in that it is classed a regional recurrence and its great news that your moms cancer has not spread. However, i dont where you are in the country, but i would seek a second opinion, if they say are reluctant to do rads because of nerve damage. I have just had rads to my neck area, they told me its a very vascular and nervy area too, i did suffer some nerve damage which has caused some pain but thats taken care of with pain killers, have to say its worth it, as i saw my Oncologist yesterday and he said that it looks like the rads have shrunk the lumps (they are not completely gone)and no more have appeared, and together with the arimidex and zoladex and the herceptin that i’m on, he’s hopeful that it will control the cancer.
Also, have they taken a biopsy of the lumps on your moms clavicle and re tested the cancer hormone status? I ask this because on my original diagnosis, i was HER2 negative, when it came back, they tested it and I was HER2 positive, therefore, I benefit from Herceptin… I think you should ask the question, just so you open every possible option for treatment for her…
You sound like a fantastic, caring daughter and your mom should be very proud of you, you have a great attitude too towards battling this disease… i also live in hope that if my cancer does progress, then hopefully by then, something else will be out there to chuck at it.
I also would not recommend using alternative therapies, stick to what the experts know, I really can understand how fed up she is of having chemo after chemo, more tests, hospital visits etc, it does get you down… i just try and plan nice things in between to get me through… weekends away, holidays, shopping trips, lunch out with friends etc…
Please keep us posted on how she is getting on…
Take care
Jakki
x
Hi Jakki,
Thanks for your reply. I passed it on to mum, she finds it comforting that people are rallying around on the forum (she’s awful with computers so hasn’t got this far),
I’m encouraging her to get a second opinion about rads and also about getting lumps hormone tested again.
She has also discovered a friend of a friend who has had reoccuring breast cancer (though now stage IV) for the last 20 years and has adapted to live a largely normal life. So some encouraging news…
Keep us posted about you too - the support on here really helps.
Skylark x