Hi, Catherine,  so sorry to hear about your husband.  What I am about to say is my opinion and mine alone.  Your husband has to make up his own mind.  I was operated on for womb cancer last September and found it had already spread to my cervix. The oncologist presumed I would have radiotherapy which I had already decided against. Less than 8 weeks later at my first check up I was told it was in my pelvic area and in my peritoneum, which the radiotherapy wouldn't have helped.  I was then offered chemo which I also refused.  I explained to the oncologist that I wanted quality rather than quantity of life (peritoneal cancer is incurable), so she agreed that I could have Letrozole, a drug originally given to breast cancer sufferers, and I have been taking that for several months niw.  I know I wont survive this cancer but at the moment I am enjoying my life, going on lots of holidays and days out, and feel well.

Whatever your husband decides I wish him the very best.  And whatever course he takes pleasedon't let him have doubts. That he has done the right thing for him.

Hi Pauline  -  I am sorry to hear your story and am glad you are doing well at this time.  With incurable disease (Im in the same boat) I think your decision was very brave and obviously the right one for you - at some point soon I will be having to make the same choices but presently I am coping ok.

The difference with Catherines husband is that he has a totally curable disease - survival rates are extremely high - and he is now being offered these treatments as a precautionary / mop up procedure.  It is not being offered to prolong prognosis but to cure him.

You are very right that it is a personal decision and can be made by him only.  Having suffered with BC secondary disease for three years now though, my personal opinion is that if you can cure it before it spreads do it!

I wish you continued good health and enjoy those holidays - think of us when you are having a cocktail on the beach!  Best wishes x

Hi, sorry to disagree, but it is you that is brave.  I was very afraid, not of the treatment but what it may do to me.  I live alone and am nearly 71 so felt that quality of life was better for me where I could have some fun times before it was all over.  :-))  I was very happy when my new oncologist said that he would have taken the same route as me.  If I had had radiotherapy it would have meant a 4 hour round trip standing on London's underground and a main line train every day for sixweeks. And the cost implications were enormous.  There was no help either with transport or financial and I dudnt have the energy to do it. I have not regretted my decision although I know many will disagree with me.

Hello Catherine. I am one of the enquiry nurses and our moderator, Lucie asked us if we might be able to say anything in reply to your post.

The idea of having a body wide treatment such as chemotherapy or hormone therapy is to kill any undetectable cancer cells that could have broken away and spread before the surgery and radiotherapy. In time if these cells survive and settle down somewhere in the body they can grow to form secondary cancers which are in general much harder to cure. So having chemotherapy can decrease the chances of the cancer coming back later and increase the chances of being cured. By just how much I’m afraid I don’t know because it depends on features of the cancer.  As your husband’s specialist team have recommended chemotherapy, despite the potential for side effects, they must have decided it is more likely to do good than harm. But it is okay to ask more about this and what the extent of the benefit might be. I don’t think there will be an alternative; if there was I think it would already be on the table.

Chemotherapy is a treatment with the potential for serious side effects, so patients do need to have a handle about how it could affect them. But this can be very off-putting. I think many people would tell you they found the prospect of having chemotherapy daunting and not everyone is laid as low as you fear. Chemotherapy side effects are well established and many can be managed, but there is no way to predict who will run into problems.

If your husband is struggling to decide what to do, encourage him to get in touch with his team (if there is a specialist nurse they would be ideal). He doesn’t have to have chemotherapy in as much as he has the right to refuse it, but he shouldn’t walk away from it without first talking it over with his team to find out exactly how much it could benefit him in the circumstances.

If you want to give us a call to talk this over, please do. We are here Monday to Friday, 9am to 5pm,  and our number is 0808 800 4040.

Best wishes,

Julia

I can't thank you all enough. Pauline4 and Max56 - what can I say?  How brave and positive are you two?  My initial note now seems to me to be very self-centred - this is only because, of course, I care very much how Ian (my husband) feels, and because I don't want to see him become poorly - I'm really not sure how I would cope with that, as he's always been so hearty and resilient.  He survived being blown up in Belfast in the 1970s when he was very young, and in the Army, and recovered from potentially life-changing injuries, and I think he feels that as he survived that, he can give cancer a good run for its money.  I think that's a great attitude for him to have, but everyone has their limit, and for him to tell me that he's dreading anything is very, very unusual.  Since I typed in my note, he has spoken to his cancer nurse at our local hospital, and I think she has reassured him that going ahead, or not, with chemo is his decision, and he has an appointment tomorrow with the oncologist to discuss things further.  I'm very glad about this.  At least he will have plenty of information and advice available to him.  Julia - thank you for your response, too - I've not attended any of Ian's appointments regarding his diagnosis (his choice, not mine) and I have to admit to having felt rather as though I was floundering around.  He will only tell me what he wants to tell me (to try and protect me, I'm sure), but I would far rather know precisely what is happening.  I think that the chemotherapy nurse on Friday persuaded him that I SHOULD be more involved, because he wants me to go to his first session, should he decide to go ahead.  Hallelujah!! Once again, thank you all so much, I'm already feeling happier.  I'll report back following his appointment tomorrow.

Hi, Catherine, I just wanted to say I hope all goes well at your husband's appointment tomorrow.I, too, have to see the oncologist tomorrow for results of a recent MRI, always a frightening time.  Please do let us know how things are going with you both.  My very best wishes!

Back again with an update!  Firstly, Pauline4, I hope you're doing OK?  I really appreciated your good wishes the other day.

Ian is going to have Tamoxifen, and a course of radiotherapy.  He is far, far happier than he was three days ago, and feels that he is far more in control.  He did find that his surgery wound is infected, though, and has been given some antibiotics to sort that out.  The oncologist took him off two meds that he was prescribed after a minor heart attack in early 2012, which I was very pleased about - he was on two lots of blood pressure tablets, and something called bisoprolol fumarate, and now he only has to have one blood pressure tablet, his daily aspirin and the Tamoxifen.  I say "only" - it's more than enough!  He's obviously going to be monitored regularly, as well.  I never thought (who does?) that I'd have to deal with this situation, and I am so glad that there are so many lovely people out there who understand exactly what it's like, from both patient and partner's point of view.

Hi, Catherine, what good news.  No chemo, hurrah!  I take Letrozole which is the same kind of medication as Tamoxifen.  I am sure he will do well on them.  I was told yesterday that my main tumour is now 1/4 the original size and all the cancerous cells in my pelvic area are gone.  The oncologist was amazed.  I am not a fool and know things can go pear shaped, but for now I am on air.  :-)

Wishing you and your husband all the very best,  enjoy life! x

Pauline4 - that is seriously good news for you!  Ian is very relieved not to be having chemotherapy, as you can imagine, and we have gone totally mad and booked a holiday for November - Sharm-el-Sheikh, here we come!!  The thought of a few days of doing absolutely nothing but enjoy ourselves is the best pick-me-up!  His radiotherapy should finish by mid September, and he will be well-established on the Tamoxifen by then.

I wish you continued improvement, Pauline4, and once again, thank you to everyone who responded to me this last week or so, your thoughts and advice have been invaluable. XXXXX