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Treatment Options and Family Pressures

15 Jul 2010 17:23

Dear All.

I am new to this forum and am looking for advice.

I was diagnosed with breast cancer eight weeks ago at the age of 62, following the discovery of a lump on self-examination - Mammograms hadn't picked anything up. My mother had stage 3/4 as, we think, did her mother.

I am now very concerned that my children or grandchildren may have also drawn the short straw.

I have had persistent 24 hour a day bone pain for five years without satisfactory explanation, despite seeing a number of specialists. When I startrd with investigation for this I was diagnosed with cancer within two days of seeing the surgeon. Because of my previous history I was sent for a bone scan. Although the results of this show no cancer, a CT scan has shown up abnormalities in the blood vessels in my liver. Again, there is no satisfactory explanation for these. I have been informed that they are not cancerous at present and that I shall need a further CT scan in 6 months.

I have had a lumpectomy and sentinel node biopsy carried out and return shortly for the pathology results. I had surgery done as a result of extreme pressure from my family and feel that I pursued it for all the wrong reasons. I am a realist and have no desire to buy years without quality of life, but I just wasn't in the emotional state of mind to stand my own ground and, took this option solely to improve/maintain family relationships - Not at all like me ,as I am normally a very strong and independent person!

In my heart of hearts I feel that this was the wrong decision and am sure that I do not want any further treatment, regardless of the prognosis. I am dreading the ensuing battle with my family more than receiving the worst news possible.

I have been trying to find details on quality of life following cancer diagnosis , in order to help me make an informed decision, but all I can find are statistics on survival rate in years.

I presume that others have had similar experience from well-meaning family and friends and wonder how you coped or where you found the necessary information to guide you through this maze?

Many thanks in anticipation,

Jolamine

Re: Treatment Options and Family Pressures

15 Jul 2010 17:59 in response to Jolamine

Hi Jolamine.

I am so sorry that you feel you made the wrong decision.I had BC 3 1/2 years ago.Ihad 6 months chemo to shrink the tumour,mastectomy and 17 lymph glands removed,3 months chemo and 5 weeks radio.9 months later it returned in the lymph glands in my neck and chest and am now on tablet chemo for the rest of my life.It is not my childhood dream and I get days when i feel worn out but I would do it all again because I have had 3 years that I know i would not have had without treatment.I thank my oncologist for every hour of the day that he has given me and am so grateful that so many people are working hard so that i can keep living.It may not be my old life but it is life and i love it..warts and all.

The ultimate choice is yours but there are so many treatments out there.It is unpleasant at times but so are many things.

Good luck with your choice.Keep us posted (.Just read back,sorry didnt mean for it to sound like a lecture:) )

Rose xxxx

Re: Treatment Options and Family Pressures

15 Jul 2010 19:42 in response to harryeleri

Hi Rose,

Many thanks for your reply.

I know that there are many who would fight tooth and nail for that extra day of life and it is good to hear that, having come through all you have, you still feel so positive about things. I have read everyrhing I can lay my hands on, but have not got the information I seek and I think that I have reached the decision that there will be no further treatment for me after tomorrow regardless of prognosis.

This has been the most difficult decision of my life and I only hope that it is the right one.

Regards,

Jolamine

Re: Treatment Options and Family Pressures

15 Jul 2010 20:09 in response to Jolamine

I wish you all the luck in the world.Please stay in touch so that we can support you in this.

Rose xxx

Re: Treatment Options and Family Pressures

15 Jul 2010 20:32 in response to Jolamine

Hello Jolamine,

I just really wanted to say Good Luck whatever your final decision.

I'm curious and would like to ask you further questions about your decision but I don't want you to feel pressurised in any way (sounds like you feel that you've had enough pressure from your family and now don't need more from a perfect stranger on a message board)......:)

If you would like to chat about this some more please do come back - no judging you at all, I'm just pondering why/how you've reached the decision not to have treatment and wondering if you have another plan in place?

If you wanted to answer my questions they are: Are you worried about the treatment being painful? Are you scared that it won't make any difference and you'll be fighting in vain? Are you depressed and tired out with the previous bone pain and just feel you've had enough? Am I anywhere near being on the right track at all?

As I said, no pressure at all but if you wanted to talk about this some more I'd be interested in hearing from you - and if not then we'll still be here and you can come back anytime you're ready......... That applies whatever your final decision - we'll still try to support you all the way.

Dizzie xx

Re: Treatment Options and Family Pressures

15 Jul 2010 21:41 in response to Jolamine

Dear Jolamine,

Your dilemma is awful, but in my reply I will be as honest as I can. The other replies have been from people who have been on both sides of the fence in that they have had cancer, and in my case, loved someone who had the disease. In both cases they have advocated treatment for cancer and possibly life.

I too am of this belief; that you should follow up on the treatment options offered. Don't think I am unaware of the whisk of procedures you have already experienced. But I've come to realise how much this treatment takes from a person who experiences it and that is 'control' as much as anything else. I believe that you feel all choices have been taken from you, and that you may feel that in order to regain control, you need to do the opposite of what the medical profession and the people who love you want.

I also believe you're more tired of it all than I can understand, but what I do understand is that your choice to forego treatment gives you no second chances. Your choices as to how your life is and what control you have comes within whatever parameters you're given. This is as it is for us all. It was like that for you when you were well, and there is no difference in your illness.

So think with honesty about your decision. The people who love you love a life that is worth so much and they will not let you forsake it without a fight.

Mine is one more piece of advice you said you were looking for. I hope it's worth something.

Please write back and let us know how you're getting on.

Best wishes

Kathy

Re: Treatment Options and Family Pressures

15 Jul 2010 22:40 in response to Dizzie

Hi Dizzie,

Thanks for your good wishes.

You're pretty close with your questions and I am happy to answer them.

1) No I am not at all afraid about the treatment being painful. I work in a medical field and watched my mother battle cancer for 12 years. Quite frankly, if she were an animal, they would have put her out of her misery.

I am more concerned with quality of life. I have no wish to end my days as I have spent the last nine weeks - running backwards and forwards to doctors/nurses/radiologists, hospitals, clinics, etc on a daily basis and having appointments changed at the last minute for no good reason. I am still waiting for dressings to be supplied for my post-op wounds for surgery which took place over a week ago. The GP has prescribed more dressings, but the pharmacist cannot get them for at least 10 days. The result is that I have had 3 days travelling a 40 mile journey to beg for pads from my local hospital as an interim measure. The last time I was there they gave me one pad! My GP prescribed 10, but as I use about 4 a day this is of little use, particularly when I haven't got them yet. My breast care nurse says that she doesn't have any. I am a professional person, used to running my own life and I have no wish to see it reduced to this level. This is only a very minor glitch in a sea of many greater ones since I started this journey.

2)At present I have no specific plan in place, but can make arrangements as necessary.

3)Yes I am tired out with running around consultants who don't listen and treat me like another statistic.

I am 62 years of age and although I would dearly love to stay with my family for longer and see my grandchildren grow up, I realise that there is little point in doing so when I am unable to do the things that I would like to be able to do with them. I am concerned that despite the bone scan results, my bones are still extremely sore (especially at night) and nobody wants to know - there were glitches with the bone scan too, so is this a false negative? Treatment for nerve pain is with anti-depressant medication which makes me too tired to function and doesn't touch the pain, so I no longer take it.

Yes I may well be slightly depressed given the diagnosis I've just recieved, but I don't think that this is anything serious. I'm more angry and frustrated by it all than anything else.

I have looked at all treatment options and don't see any of them going any where near maintaining an acceptable quality of life for me. Hormone therapy will only make my mood swings worse and they're bad enough already. As for hot flushes, well I think that they're back again just now without the hormone treatment, but I just couldn't cope with them if they were to get any worse. I was unlivable with during the menopause and would not wish a return to that stage on my worst enemy let alone my beloved family. Radiotherapy and Chemotherapy both carry some serious side-effects and, in my professional life I have seen too many of these to wish to be trapped in a body that has to suffer these on top of the cancer symptoms. Pursuing either of these options would involve me taking time off work. As I run my own business, this probably means facing bankruptcy.

I have fought serious illness in the past and found it a very uphill struggle to get back on track. That was 16 years ago, when I was younger and fitter. I'm just not sure that I have the fight left in me this time and think that I would rather have three weeks of quality time whilst being my own person, than twenty years of being controlled by well-meaning family/friends and medical personnel. I was called back for a second CT scan of the liver to confirm the findings there.The liver complications are an added worry, that makes treatment seem futile. I have also been called back following mammogram and ultrasound for further scans because of an artifact in the same breast - One false positive and one false negative are not reliable enough grounds to convince me that there is not another lesion present. Again, I am not being defeatist here, but there are just too many uncertainties in the pot.

I am however a realist and the one thing that I will do is leave blood behind for genetic testing, so that if my family want to go down this route at a later stage they have the means.

Sorry to all for sounding so maudlin. I am not looking at this in a negative way. I just know that I have to feel happy with the final decision and, in the absence of qualitative research, this is the only decision I can reach.

Has anyone else decided to shun treatment at an early stage?

Jolamine

Re: Treatment Options and Family Pressures

15 Jul 2010 23:07 in response to Kathy

Hi Kathy,

Thank you for your heartfelt opinion. I am sorry that you have been affected by this disease too. Having nursed my mother, and done so willingly, it is not something that I want my family to have to do for me. Whilst I can fully appreciate your viewpoint, I have outlined but a few of my reasons to Dizzie.

You are quite right, it is the loss of control that probably worries me most and, if I cannot hold on to control of my own destiny then I'm not sure that I want to carry on. I have spent the last week trying to weight up the advantages of treatment as opposed to the option of refusing it and do not see any great benefit to prolonging life without quality and dignity. I am not being perverse about treatment, as you suggest to regain control. This has been the hardest decision I have ever reached. I now have half my family on side with my decision, but fear that I may have an ensuing battle again with the other half. Although I fully appreciate the motives, this is grief that I could well do without at this stage.

I am now quire resolved to accept the life I was given within the parameters of nature and let nature take its course.

Thank you for replying. As a family member touched by cancer I can see your viewpoint, which is not dissimilar to that of my own family. I find it helpful to have this unbiased opinion, especially when you have cared for someone in this position. I suppose that it depends upon the experience you've had. All cancers are different and they affect people with an accumulation of additional problems. I know that I would not want my children to have to give up work to care for me and my experience of the hospice that my mother was in for the last four days of her life, do not encourage me to take that path either.

Again, sorry if I've upset anyone with my viewpoint, but it is helpful to be able to speak to strangers about my feelings.

Jolamine

Re: Treatment Options and Family Pressures

15 Jul 2010 23:13 in response to Jolamine

Hi again Jolamine,

I want to start by saying I love the honesty in your post and I can now see exactly where you're coming from. Your initial post didn't give me a clear picture but your answer to my questions definitely has......

From what you've said about your post op treatment so far, I think you've been treated terribly and I can feel the frustration in your post - understandably. It seems completely unreasonable to me that you should have to wait for essential items such as dressings and be having to travel around trying to organise these essential items yourself - simply ridiculous and unacceptable in my opinion.

I can also understand that you feel like a statistic, they do not seem to have done much to make you feel otherwise and I feel so sorry for you because of that. It seems people either get outstanding care from the start with few if any hiccups or poor care that just doesn't seem to improve and everything needs to be 'fought' for.

You seem to have given this 100% serious consideration - it's obviously not a rash decision that you suddenly woke up with this morning Jolamine and I do respect you completely for having the courage to say how you really feel.

If you've made the decision that you're not going to go down the Radiotherapy and Chemotherapy route then no-one, not even your family, should make you feel that you 'must' have the treatment. No-one should make you feel that you're letting them or yourself down. Chemo/Radio isn't for everyone and if you've decided it's not for you then what you must do is talk through your options for care once things move along (but you already know this as you're involved in the medical field)...

I want to send you a huge hug Jolamine and thank you for sharing your story with me. If you stick with your decision we'll still be here to help you in any way we can on those 'darker' days. Sometimes just coming here to bash out how you feel on your keyboard can relieve the pain and tension a little.

Sincerely wishing you all the very best

Dizzie xxxx

Re: Treatment Options and Family Pressures

16 Jul 2010 10:38 in response to Dizzie

Hi Dizzie,

Thank you for your reply.

Yes there is a lot of frustration in my posts. Whilst my surgeon has been very patient in listening to my views, I am aware that he is a busy man and has not got time for any case that is 'out of the ordinary'. This is where his nursing team should help out, but all of them have been worse than useless. I have always striven to give my patients 100+%, whatever their problem and find shoddy treatment unacceptable.

Believe it or not, when I asked one of the nurses for information on treatment options because I wanted the full picture before undergoing surgery, I was told that it wasn't their protocol to discuss this until after surgery, as most women didn't want to know about it until then. When I said that I did and couldn't make surgical choices until after I had all the facts, she still refused to give them to me and I had to find them elsewhere - So much for patients being given all information and being able to make informed choices!

I go for the results later today, so thankfully not that long to wait now. From the unusual positioning and shape of my lump, although small, it is likely to be a more agressive tumour and also likely to be triple negative. Without the option of hormone therapy there is little choice left.

My mind is all over the place and I'm still not sure.

Jolamine

Re: Treatment Options and Family Pressures

16 Jul 2010 11:19 in response to Jolamine

Jolamine,

Have you thought about contacting the nurses here at Cancer Research? I understand they are brilliant and will definitely have the time to discuss your options with you BEFORE you commit to anything rather than afterwards. You can contact them via the link on the main page - maybe worth having a chat and running your feelings past them?

I totally understand your confusion, I have a similar situation ongoing at the moment (I'm unsure about a major op that is being planned for me in September) which is why I was interested to hear your reasons for possibly refusing the treatment.

Please do come back this evening and let me know about your results. I'll be looking out for you later.

Good Luck Jolamine, be thinking about you

Dizzie xxx

Re: Treatment Options and Family Pressures

16 Jul 2010 11:30 in response to Dizzie

Jolamine,

This is the number for the nurses on Cancer Research UK - freephone number, 0808 800 4040

D x

Re: Treatment Options and Family Pressures

16 Jul 2010 11:33 in response to Jolamine

Hi Jolamine

I have been following your thread with more than a little interest, if I can phrase it that way?

You present a unique viewpoint on this forum, and one that I myself have considered. From your posts it would appear that we have similar professions, and as such, maybe see more than others once on this path.

My father was diagnosed with advanced Prostate Cancer Xmas Eve 2009. It has spread everywhere, with the prognosis relatively poor for his staging. I get the feeling that he is only going down the treatment path as he is expected to do this. Now, 7 months in, I find him a changed man. I cannot say that the disease has worsened, as he is still functioning well in the home environment. However, mentally, he is changed, and I think for the worse.

Nobody can make your mind up for you, you of course realise this. However, I feel that you are being very brave, and in alot of ways realistic. This will probably prompt a deluge of posts now! However, you seem to have weighed up your options, and taken into account your life experiences.

I wish you well with your forthcoming results, and hope you come to a decision which is right for you. One that your family also understand and support you with.

With regards and best wishes. Good luck.

jadziadax

Re: Treatment Options and Family Pressures

16 Jul 2010 11:34 in response to Dizzie

Dear Dizzie

I have been to Maggie's Centre and had a long chat with counsellors there who were very helpful and, although they didn't pressurise me either way, I felt that they were not disapproving of my decision.

I don't envy you having to reach a decision about your pending operation - I know that I have been to hell and back in the last few weeks! - Whatever you decide, I hope that you reach the right decision for you.

Will come back later with pathology results.

Jolamine

Re: Treatment Options and Family Pressures

16 Jul 2010 11:54 in response to Jolamine

Hi Jolamine,

I am very sorry to hear of the treatment you've

received and the lack of information you've been given. You are right

that the final choice should be yours but you need the facts to be able

to make this choice. Hopefully once you have found out the results,

your consultant will be more forthcoming with the options and the

likely outcome.

As far as quality of life goes, I can only

comment from my own perspective. I have had breast cancer twice, both

triple negative and both grade 3, once when I was 28 and again 13 years

later. I had chemo and radio both times. I was lucky as my consultant

was excellent and told me all the information I needed. On both

occassions he told me we could sort the problem so that I could get

back to a normal life. He was right, to be honest my quality of life

is better than it was before but that is more to do with sorting out my

priorities. As far as my health goes, I'm fine and can do everything I

want to. I had my regular check up yesterday and had a long chat about

my prospects for the future and I'm feeling pretty positive so even if

yours is confirmed to be triple negative, it doesn't mean that there is

no hope or that you will now always be fighting breast cancer or

waiting for it to strike again.

You sound as tho' you have

other health concerns which are making you question if treatment is

worthwhile. Hopefully the results from your lumpectomy will help you

decide if this brush with cancer is just a blip that can be fixed and

'forgotten'.

Good Luck

Domino