Prognosis discussions are scaring me

Hi, I’m a reluctant new member of a club I don’t want to subscribe to.(I’m sure you all feel the same). However, reading the forums is giving me mixed feeling and I feel naive. I was diagnosed with DCIS last Oct after a 5 biopsies were taken from one of two areas of calcification. I was offered 3 options - mastectomy, more biopsies, mastectomy and reconstruction. I had the mastectomy in Dec. Some of the results came back in Jan. 7 tumours had been found. 4 in situ and 3 invasive - the largest 11mm. As a results I was taken in the next day and had a sample of 6 lymph nodes taken. 2 were positive. I was also told then that I was not hormone receptive and was her2+++. My care plan is 3 x Fec 3 x Taxotere , 15 x radiotherapy and 12 months of herceptin. My Ct and bone scans were clear. I believe I am having this treatment to stop the cancer coming back. Some of your discussions suggest the chemo might not even work and that each persons situation will have been given some kind of success rating on. I admit I have been scared to ask some questions but the amount of treatment I am now being given is scaring me more! Am I so naive

Hi Paros

Your diagnosis and treatment is similar to mine except I had my chemotherapy first to shrink my lump which was 4cm. I also had a large area of calcification hence a mastectomy. I can’t say that I’ve read of anybody having treatment for primary breast cancer and not having a response to any of the chemotherapies that have been tried. Sometimes a particular chemotherapy works for a short length of time and the person is changed onto something different or a particular chemotherapy doesn’t work and the person is put on something else which works.

My CT and bone scans and blood tests were also clear like yours. The treatment you are having can make sure that if there are any microcells of cancer in your body which scans/tests do not detect, these can be killed off by the chemotherapy (and radiotherapy which is for localised treatment). Everybody is different and everybody’s response to treatment is different. I’m of the mind that all is going to be ok for me. I haven’t asked about prognosis but was told that my treatment was considered “curative”. I had 1 lymph node which was positive.

I hope that what I’ve said above may help a little.

Best wishes

Ruby xx

Hi Paros. Welcome to the club, a very special and supportive one, despite the reluctance of all its members to be here!!! Your diagnosis sounds very much like mine as well. (I had some DCIS and three main tumours and some satellite ones). I had a wide local excision and am in the process of having 3 FEC and 3 Taxotere (start the taxotere tomorrow), and will then have radiotherapy. Herceptin not of use to me. You say how naive you feel at the moment - we all start from there Paros, and there is so much information we are given, and everyone says something and has an opinion and suddenly everyone you talk to or everything you read seems to be about breast cancer and sometimes it can be really overwhelming. Your best source of information are your own doctors and nurses as they know specifically about you. This forum is wonderful as well for support and help and information, as is the BCC helpline.

You say that you understand that the treatment is to stop the cancer coming back. That’s right, that’s what it is aimed to do. You, and Ruby and me, and thousands of women like us are in this situation. There is no evidence of any spread of cancer anywhere else, and the chemotherapy is given with the aim of “mopping up” any cancer cells that might be around the body but which are not detectable. For us the greatest probability, by far, is that we will go through all this treatment (which is not easy, but it is doable), and that it will then be behind us. Not that we won’t think about it, but that we won’t have to deal with a recurrence. Like Ruby, in my mind I am thinking that this is how it will be, because that is the most likely outcome by a long way. Like the rest of life though, this comes with no guarantees and for some unfortunate people, even with the same starting point as us, they will have to deal with a recurrence or spread of cancer. That is why you will rarely, if ever, hear a medical professional say “you are cured”. (Although Ruby you have been told that?).

Anyway Paros, I hope this will help a little bit. For us the future looks very bright indeed, and I’m heading down that path with gratitude for the treatments that are available and that I was diagnosed early. Hope you can feel this way as well, not worry too much, and focus on getting better. Good luck for everything and do keep posting and let us know how you are getting on. Very best wishes. Sarah.xx

Hi Ruby and Sarah, thanks. I feel so humbled by the sincerity of your replies and I feel more positive. I did not have a very good relationship with the surgical consultant - his opening line was I’m afraid it’s not good news! However, my oncologist has a much better bed side manner and is very sweet. Up until reading the forums I felt much the same as you so maybe there’s the clue what I should do! I have my second FEC on the 6th and was fine with the first - I am working most of the time. I hope that your treatment is going well and thank you again for your replies.

Hi Paros,

I would agree with the Sarah and Ruby. It can be hard on the forum sometimes, reading other people’s experiences with 2ndary cancer and different prognoses can be frightening to say the least. But this doesn’t mean it will happen to you. Life deals us these cards and there is no way of knowing what can happen.

I am still protesting about the entire experience, but am slowly coming to terms with everything and am remaining positive :O)

Seabird, you are starting Tax this week? I start on Tues and am v v v v v v nervous. Please post and let me know how you fare. Good luck with it and I hope you do really well. Ang x

Paros good luck and take care

Ang x

Hi Paros and Seabird and all

It really takes time to come to terms with what’s happening to you and slowly your brain will adjust and you will cope with this. That is my experience of how things have been for me anyway.

When my oncologist used the words “curative” I now know that nobody is considered “cured” but with the advances in treatment I believe he thinks or hopes that that is the case for me and I have really held onto that and it has kept me going so I’m pleased he said that to me whatever the truth or outcome is. You know when you just hold onto positive things that people say? that’s exactly what I have done. Before I was diagnosed I went to see a private consultant who just knew I had breast cancer. He felt the lumps and did an ultrasound scan (I couldn’t even look at his face as didn’t want this to be real) and basically told me what the likely treatments would be for it. I was just so petrified at that point in time. As I was leaving his office I asked him (probably in a very desperate voice) if I would be ok. I’ll never forget his response. He took my hand very gently in his and said in this knowing voice “you’ll be ok” and that has kept me going as well. I also think about the advances that have been made in breast cancer treatment and also that there are plenty of women out there (who do not use this website) who have had breast cancer and are doing fine.

It can be scarey reading things on this website as Juddiv has said above but remember nobody’s story is the same so just try and hold onto the positive things that you hear - like I have and Seabird has.

Seabird I think we’ve spoken before and from what I recall from other threads I’ve seen you have a similar attitude and outlook to this whole experience as I do - that is the way to go!

Best wishes to you all

Ruby xxx

Strange to say I would have been happier if someone had said I’ve got bad news instead of which my consultant said he could improve my scar and never said the word cancer at all, just told the breast cancer nurse to get the book which turned out to be Understanding Cancer of the Breast by Backup.

I had DCIS and a tumour between 1.5 and 2 cm. A small tumour is likely to be more favourable. However each person is different. I had no spread to lymph nodes despite finding the tumour six months before it finally got operated on.

I think it’s a bit of a lottery. I was anxious because I didn’t have chemo but in my case I was told it wouldn’t have any effect over and above tamoxifen so there you are. It works for some people and not for others.

I don’t have much faith in doctors, I prefer randomised controlled trials. If they act on the results of these you are more likely to get good treatment. Also if they follow NICE guidelines you should get the standard treatment which is based on the best evidence to date of what works. Nothing is 100% but as my mother says the only certainties in life are death and taxation

Good luck

Mole

Hi Ruby - I think your posting is beautiful. Yes, sounds very much as though we are walking similar paths. It might be a cliche and some people hate it, but for me those wonderful words “keep your face to the sunshine and let the shadow fall behind you” make each day brighter and lovelier for me. It’s nothing to do with denial or naivity, just the way I choose to live my life. Your consultants sound lovely. Hold on to their words and never let them go.

Thanks for your words as well Mole. Sounds as though your doctor was somewhat less thoughtful in his approach. Interesting your comments on trials and doctors. Hopefully, and I believe it is what happens, all doctors have their practice informed and guided by the results of trials and the recommendations produced by NICE. We can’t say doctors never get it wrong, but we have to believe that they are well intentioned, informed, and on our side. Either that, or change doctor!

Wow death and taxation! Could wax lyrical here but have probably done enough of that already. My certainty is that I love my life,despite, not because of breast cancer, I love my family and friends , I am loved and that after every night I wake up to a bright new day and good things happen, as well as the tough ones. That’s enough for me! Good luck to us all. Love Sarah.

My oncologist was not too bothered about diet or what foods to avoid, but was extremely enthusiastic that a positive attitude. is important. He is a very practical man who I feel would not say this if he was not convinced. and I really feel that what your mind is saying to your body does help. I repeat positive affirmations every day that I will be ok and healed. It makes me feel better and able to face each day without negative feelings.

Hopes this helps. Whenever a negative thoughts comes into your mind, delete and replace with a postive.

Love to you all
Judy x

Hi all

We all do what works for us and in my case what makes me feel good. I won’t give up and never have done as it’s not in my nature. Sometimes I have a little setback and may have a down day or two but I always pick myself up again and just get on with things. I do like to believe that by being positive and talking to myself by saying positive things does help. Judy when you say “delete” it makes me think of a pressing delete on the computer and it made me smile but it really does work.

Seabird thanks for what you said above we really deal with things in a similar way. By the way sorry for not having replied earlier, I must have missed your reply and Judy has brought it back to the top so thanks Judy.

I am so pleased that my oncologist was enthusiastic about my prognosis whatever the actual outcome maybe because it has made me lead my life in the way I have to date i.e. not living it expecting the cancer to come back but living it to the full and trying to get things back to how they were before this happened. I never asked about my prognosis and I don’t want to know but I have read the threads of people who have a similar diagnosis so I’m not being naieve either.

So let’s “delete” (well said Judy!) those negative thoughts from our mind when they come along and onwards and upwards!

Ruby xx

Hi Ruby and Judy - So great to read both your postings. Like you both, my attitude is to get through one stage at a time. At the moment I am going through all this treatment to get the breast cancer part of life behind me (not forgotten, but behind me). If ever I have to deal with it again in the future, I will, not wasting time dwelling on that now though. I hold on every day to the fact that the likeliest outcome, by far and away, is that this is a one off occurence and it’s being treated. There is so much more to life than breast cancer, that’s just one thing that’s happening now, but it does not define my life, and hopefully never will. It’s hard to keep track of all the threads sometimes, lovely when one comes up again and you see a reply! Good luck both of you and look forward to hearing how you get on. Sarah xx

Hi everyone so glad that my “delete” helps. Another thing my onc said that I found helpful was - the cancer has been cut out so think of all the treatment (6 FEC chemo, rads and 12 months of Herceptin) as insurance! Warm and positive vibes to you, Sarah, Ruby and all who are treading this bc route - this will make us strong women!

love Judy x