It has been suggested I bring my post to the secondaries section. If any of you can help I would be most thankfull;-
In 2006 my wife (then age 41) was diagnosed with breast cancer, had a lumpectomy, chemo & radiotherapy. She was the same age as her mother when she died from breast cancer.
After symptoms from November 09 my wife was diagnosed in February this year with secondary brain and lung tumours. Both were surgically removed but within 3 months the brain tumour had regrown. In July it was blasted with singe shot targeted radiotherapy and with Herceptin the cancer is apparently not currently active. (note: the primary cancer was not hormonal but the secondary cancer is. Also it is BRCA1). Last week she had her annual mammogram and has just received an appointment for ultrasound, biopsy and consultation. Since a day after the targeted radiotherapy she has been suffering severe epileptic type seizures.
I ask for any relevant advice or information on the above and specifically on her estimated likely life expectancy and quality of life expectancy, epilepsy control and what is the best I can do for her and our 13 year old son.
Thankyou
I am really sorry to hear about your wife’s secondaries. I am sorry I can’t help re the radiotherapy and the associated epilepsy. I just couldn’t let your post go without a comment, as I am the same age as your wife, was diagnosed with primaries at the same time and have a 14 year old son. I also have a step-daughter who suffers from epilepsy, so can identify with what a horrific experience seizures are for all of the family. Her seizures are at the moment under control with medication, but it does take a while to get the correct dosage. Hopefully your wife’s epilepsy will be got under control asap.
With regard to life expectancy I think it is difficult to give you advice, as being on here has taught me, above else that this shitty disease is so unpredictable! I very much try to stay positive and take my support from others who have had secondaries for a long time, some people on here have lived with secondaries for many years. Hopefully somebody else will come along with a good news story to boost your spirits. The fact that herceptin seems to be working is an excellent sign. You also mention that the cancer is now hormone receptive, there are many different ones to try, so your oncologist will now have a wider variety of ‘weapons in his armoury!’ My secondaries (in my bones and chest) appeared when I was taking one hormone. I was then switched to another hormone, which appears to have stabilised things (on the last CT scan, no further spread was showing!)
Sorry I am not able to answer your question, but I do wish all of you all the best! As for how to support your son, in my opinion the best support for your son is to give him as much normality as you can. As for supporting your wife…you have made the first step coming on here! You got me thinking what advice I could give, I turned it round to how would I like my husband to treat me, again normally! lots of laughing, positive thinking and good communication.
I don’t have any advice or answers I’m afraid but am replying to bump this back up the posts in hopes that someone will see it.
I am so very sorry to hear of your wifes diagnosis, with her family history it must be really very frightening for her.I think it is very difficult to talk in terms of life expectancy though I know it’s the question we all have. All I can say is that when I was diagnosed with secondary cancer I thought that was it for me that was in March and I’m so much better informed and positive thanks to these forums.
There are many positive stories here and there are lots of different treatments available. I hope your wifes medical team will be able to give you a better idea of whats going on and the type of treatment plan they can offer and I hope that they get the seizures sorted. Best wishes for the ultrasound and biopsy, once they are out of the way the medics should be able to tell you more.
You will be in my thoughts and prayers and I hope that someone will be along soon to give you help and advice.
Julie x
I am finding the medication for her seizures a little trial & error and logically confusing. First - epilepsy was never mentioned as a possible side effect of the single shot targeted radiotherapy to her brain (her first attack was a day after treatment in July ((and a day before going on holiday!)) and was her worst attack being unconscious for around half an hour and her face completely blue through self suffocation - worst of all it was our son who found her and neither of us knew what was happening) but now the medics make out it was almost to be expected.
To control the epilepsy she was put back on steroids (Dexamethasone 4mg) to reduce the swelling in the brain around the tumour (much against her wishes as the side effects from previous admittedly much higher doses were many and seriously reduced quality of life - not least the painful feet preventing her from walking any distance). The fits continued, got progressively more frequent and progressively milder so she was also put on a low dose of anti epileptic medication (Lamotrigine 25mg).
It has recently been decided - and this is where I do not understand the logic - to gradually take her off the steriods altogether despite the medics assumption the swelling will never subside and increase the Lamotrigine to 75mg. Whether or not as a result of this the fits are again becomming more severe - her second to last one lasted over an hour, although she remained conscious throughout, and her last one a couple of days ago where she was unconscious for 20 mins has left her, for the time being at least, with only partial use / feeling right down the right side of her body. I have just been given Midazolam Buccal to administer during a severe fit but it reads like potent stuff.
Any info you have on medication would be appreciated.
Does anyone else have experience of epilepsy after brain tumour radiotherapy?
As stated in my first post my wife was due for an ultrasound, biopsy and consultation following her mammogram. The appt. was yesterday and despite arriving 3/4 hour early by the time they had got round to doing the ultrasound and biopsy (2 hour wait) the consultant had gone home, this despite repeated assurances to the contrary. After I had spat out my dummy we were eventually told that she had a lump in her right breast but because it was now 9pm we would have to come back in a week (100 mile round trip & childcare to organise) to find out what it was. “How big is it?” “That’s irrelevant” “Irrelevant or not, how big is it?” “15mm”. So we are left with another week of possibly unnecessary worry and another week of waiting to ask to be referred to a neurologist re her epilepsy all thanks to the incompetence and inefficiency of Ayr Hospital whilst my wife remains partially paralysed down the right side of her body. Not a good time.
I cannot offer you any useful advice, medically, but I am an ex-medic and so know how the system works (or doesn’t). It sounds to me that you are being treated very poorly. Could you ask for a second opinion, and fast? The type and severity of seizures that your wife is suffering are simply not acceptable.
My wife and I saw a new G.P. today who will liase with a Neurologist re her epilepsy medication and get back to us a.s.a.p.
The G.P. also advised us, however, that the partial paralysis in her right arm and leg following her last seizure is likely to be permanent, albeit the severity will vary. Happy days.
Niggling at the back of my mind I wonder if the targeted radiotherapy blast was badly administered and if the epilepsy should have been treated better and should she be having the reasonably good quality of life the consultant promised and expected prior to treatment. As well as the obvious it is my lack of knowledge that gets me down, but I suppose that either way what is done is done and can’t be undone.
Just received an email from the G.P. - a letter for us to give to consultant next week.
She has also just phoned having spoken to the Neurologist. The bottom line is she is upping the anti convulsant Lamotrigine to 125mg immediately. If no improvement she is asking the consultant if it should be increased further or an alternative tried. Ultimately she is not certain - or that hopeful - the fits can be kept under control by anything and, like the paralysis, maybe permanent.
As bad as the news has been today, I appreciate we have at least been told straight, something previous doctors have been too weak to do.
So sorry to hear the news about your wife, this must be very hard for both of you, but she is lucky to have you being so concerned for her. I can’t offer anything helpful, I’m afraid, just good wishes.
We saw the consultant last night for a total of 1 1/2 minutes. The lump in my wife’s right breast is indeed cancerous. Tests are ongoing to find out (hopefully tomorrow) if it is the primary cancer which has spread from the left breast (rare but possible and would require surgery) or if it is Secondary and if so is it hormonal (to be treated through medication) or HER2+ (in which case the Herceptin she is currently getting should control it).
Can anyone please advise what are the various implications and what questions should I ask tomorrow.
Thankyou.
I have attached a link below to the cancer research web page which has a list of questions to ask that may help you forumlate your own list. In addition I would recommend that you keep a note book/diary of treatment dates/what drugs are given any side effects/symptoms when they occurred/severity duration etc. I have done this from the outset of my secondary diagnosis in October 2009 and have found it invaluable. I take it to every appointment with me and write things down, I always take my husband or a close friend so that nothing is missed.
This is a terrible disease and I am so sorry that your wife and family are having to go through this. It takes some time to come to terms with this diagnosis (if we ever really do!). The uncertainty and unpredictability of it is almost impossible to deal with.
I hope you have a successful appointment tomorrow. Best wishes
I thought I posted yesterday but guess it got lost in the ether so I shall repeat;-
Thankyou Sue for the link
The consultation was thorough;-
The lump in my wife’s right breast is a second Primary tumour 1.5cm aggressive triple negative. (the first was in her left breast in 2006). She now has to decide what surgery to have - lumpectomy with radiotherapy or single or double mastectomy without.
Any advice is welcome
After discussion with a Neurologist (at last!) medication for her seizures has gone from originally 25mg to now 200mg a day and she is back on 4mg steroids (the fits are caused by swelling around her Secondary brain tumour following stereotactic radiotherapy treatment). Her last fit left her completely paralysed down her right side and I required help from paramedics to get her up from the floor and to bed. Thank God the paralysis has mostly faded now but she is far from back to normal. I know this because when I pointed out to her that if she only had one breast off then she would float on her side when she went swimming, she was unable to thump me. The Midazolam is fantastic stuff and I am angry I wasn’t given this to administer back in July. It would have prevented much of her suffering.
She is also to have a c.t. scan of her torso to check if the secondaries have spread. To where the onc. didn’t elaborate. We are not aware of any symptoms to suggest it has though.
Whay a dilemma to be in. Everyone is different in how they view mastectomy. Mu husband was brilliant with me and went along with whatever I felt was best for me, however, I had no option with my first mastectomy because of where the tumour was. I then decided to have a second mastectomy about a year later because I was just so uncomrfortable/unbalanced and in a lot of discomfort/pain in my shoulders and back, no more aches and pains after that. I have not regretted it at all. I often don’t bother with my falsies and I don’t care what people think. But not everyone is like that. This suited me best.
I had chemo before my first mastectomy and then 15 sessions of radiotherapy, 15 daily trips of about 50 miles each way. Maybe you need to factor into the equation how far your radiotherapy unit is from you and the number of sessions your wife will need to have and how that will impact on her quality of life/health at this stage. Also, the impact of major surgery. I am not sure I would have had the courage to have a double mastectomy in one go.
I am not sure if any of this will help but please ask anything else, I am happy to answer your questions.
My husband and I get through a lot of this with humour - ‘getting things off my chest’, ‘the only tits round here are outside on the nuts’ and many others that I can’t remember off the top of my head. Keep smiling if you can.
Today we went for my wife’s pre operation assessment re her new breast primary tumour. Here we met with the anaesthetist who had been led to believe we had already met with the surgeon and decided upon a lumpectomy rather than mastectomy and she was under instruction to dissuade my wife from any surgery due to risk of fatality from anaesthesia. Apparently the brain tumour and epileptic fits increase this risk.
When we pointed out that the last time we had met the surgeon was in 2006/2007 and there had been no consultation or decision taken confusion, panic and phone calls ensued.
The upshot was, after I had spat my dummy out, we had the consultation with the surgeon there and then (Could we come back tomorrow? No). He advised my wife that he was prepared to operate - but only a lumpectomy - and the anaesthetist was happy to anaesthetise so long as we understood the risk, however he was keen to recommend no surgery on the basis the primary tumour will not kill my wife before her current secondaries do (this predicted with little certainty to be in the order of around 12 months, 36 months highly unlikely). The only given benefit of surgery was psychological for my wife to think she was “cancer free”.
My wife accepted his advice and accepted the prognosis / situation without blinking.
What other treatment is available to deal with the new primary breast tumour is yet to be discussed with the oncologist, however most likely there will be none and it will just be allowed to grow(!) despite being known to be highly aggressive. It was pointed out that chemo had already proved ineffective first time round and my wife is not keen to go through that again.
Any opinion, advice or information on the above would be gratefully appreciated.
I can understand why they are reluctant to operate. I get the same sort of response from my Onc and I don’t have the brain tumour problems your wife has. I do know from what I have seen with others that complications with healing/wounds can often make matters worse - although you must wonder how could anything be worse?
I am now on my third lot of chemo, second lot for secondaries. The regime I am on now is not making me feel ill so maybe it is worth considering/exploring the chemo option.
For what it’s worth I am sure from my own experience that however awful the diagnosis, treatment whatever is to me, it is far worse for my family and friends who have to watch me go throut it and will be left with a world without me in it. I know I will leave a gap that they will have to deal with. Me, I will probably be quite relieved when the time comes - I feel nothing like that at the moment but there have been times in the last nearly 4 years now where I have felt very low and wondered if it is worth just delaying the inevitable.
Your wife may need a little longer to come to terms with what has been happening to her recently and to regain perspective, I always do after bad news. Sorry I cannot offer anything else.
Thankyou Susie for your honest reply. We met with the palliative oncologist to go over what the surgeon had told us.
She broadly agreed with the surgeon’s view that the risk from the anaesthetic is greater than the benefit of surgery.
The risks are that my wife has a fit whilst under with potential bleeding to the brain, permanent paralysis from stroke or not coming back round at all. What the % chance of any of these outcomes are no-one has a clue, whether 1% or 99%.
The benefit - i.e. removal of the tumour and attempted prevention of secondaries - is apparently negated by the fact she already has had secondaries.
The only option I understand is on the table other than surgery is just to leave it to grow and not treat it in any way. I questioned this line of thinking on the grounds that it implied the oncologists had a much more specific and negative prognosis of my wife’s life expectancy based on her current secondaries than they were prepared to divulge. A tumour doubles in size on average every 4 months. It was measured at 15mm which means it is likely to be 6cm in 8 months & 12cm in a year.
We are currently advised that there are no active secondaries - i.e. the lung tumour has been cut out and the brain tumour, whilst it came back after surgery, has been fried with radiation and kept under control with Herceptin (the epilepsy is not caused by the tumour but by swelling in the brain directly surrounding the tumour, presumably caused by the stereotactic radiation blast). We are advised the Herceptin may not work indefinitely but if it stops (and nobody knows when - it could go on working for years) there are other options including the parp inhibitor trials (if there is a vacancy). This gives a relatively optimistic impression of my wife’s life expectancy compared to the surgeon’s view of in the order of 12 months, which is what he has based his decision on.
What I struggle with is making decisions based on uncertainty. Any decisions. This year, in order to care for my wife, we have moved home and our son moved school (our old home remains unsold) and I have closed down my business after 13 years in order that I can care for her 24 / 7. Hours before getting the 12 month prognosis we were in the process of ordering a mobility car with large deposit. All these decisions based on a vague prognosis of around 3 years.
I guess, reading between the lines, that it is up to you and your wife as to what procedure you wish to take. As someone with secondaries (bones and liver) I have seen some positive results after chemo (oral) and hormone therapies. However (and I speak as a single woman with no offspring), I am not sure if I would want to proceed with further intravenous treatments. Bottom line - weighing up quality of life vs. quantity. We are all individuals, instinct and personal feelings are just as valid as vague medical ‘fact’.
Hope I don’t sound negative, I’m anything but. I wish you and your wife health and happiness.
I’m so sorry you, your wife and your son are having to go through this. What has she said to you about it all? You say she is not keen to have chemo again … what are her feelings on the quality vs quantity conundrum? This disease is so shitty and while you will be wanting to keep her with you for as long as possible, for you and your son, she may get to the point where enough is enough and to just let it run its course without further intervention. I’m sure that when that time comes it will be very tough on you all, but the best thing you could do then is simply support whatever decision she makes, even if it’s not the decision you personally would make in the circumstances.
Wishing you all the best and hope that you have a bit of a reprieve over the festive season, something for you all to treasure,
Thank you Alison & Alison (another one) for your kind and thoughtful words.
I have, from the onset, made very clear to my wife that any decisions are ultimately hers to make and that I would support them 100%. It is my job to support, be company and play Parker (taxi driver). I am very conscious though that she should make such decisions based on as much information as possible and having considered all aspects as she is sometimes guilty of being impulsive or easily led. Don’t get me wrong - I am fully aware of and respect her instinct and personal feelings far more than my own, not least because she has been through it all twenty years ago when her mother passed away (it’s hereditary) and so knows what’s in store, where as for me it’s all “new” and unknown.
Her main wish is to be a mother and in this respect she is utterly selfless in her decision making. The quality / quantity quandary is “easy” in that she wants enough quality of life to spend quality time with our son, for as long as possible. Chemo - at least the hospital treatment variety - is a definite no no as the hospital for treatment is far enough away to require her staying there five days a week and so not see our son. And the side effects were pretty lousy last time. Add in the fact it was ultimately considered a failure as she still got secondaries and also that she wants the rest of her life to be as “normal” as possible i.e. she is fed up with hospitals and does not want the disease to control her way of life too much.
Tomorrow she gets a c.t. scan of her torso (as well as her 9th Herceptin) to see if she has any new secondaries and at some point we will see the Oncologist to discuss options including, presumably, oral chemo.
My wife, whilst fully accepting her situation, chooses to talk about it as little as possible and then only about the specific aspect in discussion. She refuses to have a “heart to heart” about everything in general and does her best to put on a brave and cheerful face (although after many months this is slowly slipping). She is staggeringly brave about it.
Her quality of life right now is being affected by a constant fear of severe epileptic attack meaning she is reluctant to go out, constant pain and the steroids blowing her up like a Sumo wrestler, making her feet painful to walk on and disturbing her sleep pattern.
We are spending time with family for the festive season, which I know she is very much looking forward to.