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unsure of making the right choice

27 REPLIES 27
ruby44
Member

Re: unsure of making the right choice

Hi George

I am currently going through TC & Herceptin. I've had three sessions so far with my last next Thursday.

I've used the cold cap and though I have shed a lot of hair, I still have a full covering with no need for wigs or scarves. I get bone pain two days following the chemo which is due to the Neulasta injection boosting my bone marrow to produce more white blood cells - so that's my body doing what it should. I do feel rough (fluey and aches) for 3-4 days after chemo and get mouth ulcers but they clear after a week. No nail loss so far (wear dark nail varnish to protect nail beds). It has pushed me into the change (think that's the Herceptin though) so im getting hot flushes). As I said, I am nearing the end now and I do get tired but in 3 weeks it will all be over. It does seem to whizz by once you get started.

Any more questions don't hesitate to ask.

Ruby xxx
skinnyminx
Member

Re: unsure of making the right choice

Hi George,

 

I hope you manage to make a decision with which you are comfortable.  It is a scary time for you.  As others have said, your medical team are the best people to advise you on the best way forward as they know your individual case.  If recurrence is a concern for you, your medical team could also advise on the detectability of lobular breast cancer (which I understand is different to that of ductal).

 

In a way, it was a relief that my case was straightforward (node involvement, large multi-focal high grade mass) so chemo was strongly recommended and a "no-brainer" for me to decide to go ahead with it. 

 

I agree with what Debtex has said about worrying less about recurrence having thrown everything available at it.

 

Just to add a note of caution re side effects.  They may lessen but do not necessarily completely go once the chemotherapy has finished.  Personally I still have horrible thickened big toenails nearly 5 years after having Docetaxel, my veins and tear ducts are rubbish (as a result of Epiribicin and Fluorouracil , which I don't think you've been offered), I have some lasting peripheral neuropathy in my fingers, albeit not really bothersome.  Fertility issues can be permanent.

 

Conversely your side-effects may be minimal and hardly noticeable some while after chemotherapy is finished.  Everyone is different. 

 

I have other side-effects from the ongoing endocrine treatment too.  However, for me the lingering side-effects of treatments are a small price to pay for the fact that I can rest assured that I've thrown everything I can at this disease.

 

BTW, slightly off-topic here.... one of my consultants does use the word "cured".  It's a moot point and an interesting one.  Depends on one's definition of "cured" and one's outlook generally.  If it means "restored to health, made well/better" then perhaps I can consider myself "cured" as I have "no evidence of disease"?  Doesn't mean a condition will never come back, e.g. one can be "cured" of a throat infection if there is "no evidence" of it and one can then still contract another throat infection at a later stage.  I think it is an individual choice how one wishes to refer to the state of play as regards one's own disease.  

 

All the best to everyone tackling decisions on aspects of treatment.

Debtex
Member

Re: unsure of making the right choice

Hi George 51 . I am going to have chemo as I am borderline , I had the onco type xd test which gave me a higher than 9 per cent advantage with chemo . However I would still have had it as my tumour was a grade 3 . I am starting chemo next wk and my mindset is that this is going to help me even if it is unpleasant . My last chemo all being well will be 9 jan , 6 days before my birthday . I know that by having chemo I will worry less about cancer coming back and that way I will enjoy life more . Good luck with your decision x
melykins
Member

Re: unsure of making the right choice

Hi George51

 

Firstly sorry to hear you got cancer 

 

Everyones cancer and treatments are different and to see how people are going through chemo gives an insight but it does not mean you will get the same outcome if you choose chemo. 

 

You do not say how old you are but I assume by your oldest child's age your in your mid 40s earlly 50s. I also assume your female. I understand that your family want you to have it but they have no right in telling you what to decide (sorry about being blunt here) You decide what path you want to go on

 

Adjuvent Oline cannot be accessed by you (I have tried) it is for professionals but there is 2 others you may want to try 

 

www.lifemath.net/cancer/breastcancer/therapy/

 

www.predict.nhs.uk/predict.html

 

But bare in mind the statistics used are  out of date even for the professionals .. Please also note that with or without chemo recurrance of breast cancer or other cancers can come back . Some people on here say I am cured after chemo.. No they are not , they may have a smaller percentage as you say 3% for example over non chemo treatment but they can still get it back in their lifetime. Just as someone never had cancer, can in their lifetime get cancer as well. 

 

You talk about another test mentioned in the forum I think you mean Oncotype DX test.. Although NICE have recommend it for the UK. It is sadly not available on NHS mainstream treatment . If you wish to pursue it , it would cost you about £2500.00 

 

You also mentioned side effects , some are temporary and some not. You may get some but highly unlikely to get all. But remember 

 

  • That most side effects are short term
  • They will begin to go once the treatment has finished
  • You can have medicines to reduce the side effects

Common side effects

  • anemia/low red blood cell counts
  • diarrhea
  • fatigue
  • fertility issues
  • hair changes (hair loss)
  • infection
  • memory loss
  • menopause and menopausal symptoms
  • mouth and throat sores
  • nail changes
  • nausea
  • neuropathy (problems with hands and feet)
  • taste and smell changes
  • vaginal dryness
  • vomiting
  • weight changes
  • Changes in the way the kidneys and liver work

Chemotherapy also may cause other side effects that are less common, but more serious:

  • bone loss/osteoporosis
  • heart problems
  • vision/eye problems
  • Increase the risk of developing a second cancer, usually leukaemia, years later. 

 

  • You may want to read on Macmillan site about the 2 drugs you have been suggested to have 

 

Cyclophosphamide

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individual...

 

Docetaxel

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individual...

 

My personal decision was that the small increase of not getting /surving based on statististics  for 10-15 years was small and the side effects whether short or long term outweighed the other route I have chosen . I am however, still going to have radiotheraphy and 10 year hormone theraphy treatment such as tamoxifen. This will be alongside my change of lifestyle. Lose weight, healthy anti cancer diet, exercise and a positive mindset

 

My advice to you is to read up everything you can about YOUR cancer not someone elses (but form reputable sites such as here, Macmillan etc) Ask questions , put them to the team of doctors amd nurses who are treating you. 

 

But please when you make your decision be at peace with  it .. 

 

 

 

Lucy_BCC
Member

Re: unsure of making the right choice

Hi George and welcome to the BCC forums

In addition to the support you will find here, please feel free to call and talk over your concerns with one of our helpliners. They are here with practical and emotional support for you on 0808 800 6000 and lines are open weekdays 9-5 and Sat 10-2

Here's some information about the Oncotype Dx test which has been mentioned in this thread which may be the one you are thinking of asking your oncologist about:

https://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/oncotype-dx

Take care
Lucy BCC

george51
Member

Re: unsure of making the right choice

Hi everyone,

This is my first post but reading your info this am has been really helpful. I was diagnosed in August and had left mastectomy (nodes negative) for grade 2 invasive lobular Ca ER+ HER2- on 2nd Sept. Following a MRI scan i was told the tumour was 5.7cm (how could I have something that size in my breast and not know about it - picked up on routine mammogram), Anyway when it was removed it was only 4.3 cm but as my lymph glands were negative I now have to decide about chemo (they have offered me Docetaxel and Cyclophosphamide) My oncologist used Predict which gives me an added survival advantage of 3.1% . Doesn't sound like much and I'm terrified of the thought that my nails could fall off, my hair will fall out and I may get worse peripheral neuropathy (as I already have this to some degree). My kids are 19 and 13 and they both want me to have it. I have great support from my husband, friends and family but its still really scary. 

A couple of you have mentioned Adjuvant online (which i cant seem to access at the moment - problem with JAVA) and also some other test which I;m not sure whether you just ask the oncologist to do (?test your tumour for something). Any more info would be really helpful and I be interested to know if any of you are having the same chemo as suggested to me.

Hope those of you starting chemo soon are all ok and I will check back later.

Thanks Georgexx

melykins
Member

Re: unsure of making the right choice

I had a long talk tonight with Macmillan nurse about everything and I am at peace in my mind

 

I will have the radiotheraphy and hormonal theraphy (for 10 years) but I have decided no chemo as the side effects (both long and short term) outweigh the very good prognosis I have been given by all doctors and nurses that have dealt with my case or via internet/phone

 

My role in this will to  lose weight, exercise and lead a healthy lifestyle with a anti cancer diet regime and try to get a positive mind set 

 

Thanks everone for your comments , it has been a struggle but I got to my happy place 

Debtex
Member

Re: unsure of making the right choice

Hi murphy I'm starting chemo 2 days after u . Saw oncologist again yesterday he reiterated that I was bang in the middle of needing chemo but he didn't disagree with me having it . I have got the ok from work to work at home when I am well enough until at least April so mi income shud not be too impacted . I have been at the beck and call of work family and elderly parents whose medical issues have run me ragged for the past 8 years with multiple hospital visits , social workers to deal with and 3 different care homes to deal with and calls for help in the night after falls etc . I lost my mum in December and whilst my dad has his own health issues and challenges he has been indifferent and quite callous about my breast cancer and hasn't even enquiried how my young daughter is dealing with it or offered any help to my family . this has upset me but as a result it has helped me as I have made it clear that at this point in time I am going to put myself first and have everything that is offered to stop a re occurrence . If I don't , everyone will expect me to snap back to how I was before the cancer like it was nothing . I will be running around after everyone again and all the time the cancer that escaped if I hadn't had chemo could be doing its worst . That's my way of rationalising it . Btw I have had some positive feedback on chemo from a colleague of husband going thro fect and doxtaxel . No sickness weightloss etc just tired on some days . Best of luck and keep in touch x
Murphy1963
Member

Re: unsure of making the right choice

Hi debtex, just to let you know I start my chemo 24 September so we'll be doing this together. Busy busy busy up to then with appointments!!! How are you feeling about it all now?
Murphy1963
Member

Re: unsure of making the right choice

Hi melykins, I have pm you but forgot to say, defo phone Macmillan, they do a peer thing whereby they match you up with someone similar to yourself to talk things over with. You seem to be like me and like all the information you can get your hands on. Always best to make an informed decision, I think xxx
melykins
Member

Re: unsure of making the right choice

I had a letter from my doctor saying only age was the reason for referring chemo. the cancer they are talking about is a papillary carcinoma 

 

http://breastcancer.answers.com/symptoms/the-facts-about-papillary-carcinoma#slide=1

 

I read many articles on this and from from reputable cancer sights and this cancer has a better prognosis than any other breast cancer .. Only my age was a consideration for chemo.. I just feel it is not right and I think I might be saying NO to chemo

 

Before my holidays start soon. I will phone macmillan and others to get the low down . i know they cannot decide yes or no but I want facts 

Murphy1963
Member

Re: unsure of making the right choice

Hi melykins, no one knows whether we will have a reoccurrence, but in my mind I want to make sure I do EVERYTHING in my power to help stop it coming back. Also I am a worrier and I know if I didn't have chemo my everyday life would be spent wondering and worrying. As I was told, in my case it was a personal choice and there was no right or wrong answer, but for my "sanity" I'm going for it. Petrified though!!! Going for my pre assessment at the oncology unit tonight and hopefully start next week.

Hope you are ok, keep in touch xxx

melykins
Member

Re: unsure of making the right choice

Murphy your comment 

 

 '''how would you feel a few years down the line if you didn't have chemo and your breast cancer came back and how would you feel in a few years down the line and you did have chemo and your breast cancer came back. I got my answer!!!!'''''

 

to me I would think I been lied to and cheated and think why did I bother will all that awful chemo when i got it back anyway. I know you cannot predict whether you get it back or not .but if your going to get it back anyway why bother with chemo ? ? ? 

 

 

 

 

maltomlin1
Member

Re: unsure of making the right choice

I was dx with grade 3, 4 out of lymph nodes involved.........I was not ready for chemo but it was 'on the cards'. That was over 6 years ago and I'm here, doing well, feeling great and grateful for the chance to feel well again.........
Don't be scared of chemo..........it's scary but is so..........worth it!
Debtex
Member

Re: unsure of making the right choice

Thanks ruby x
ruby44
Member

Re: unsure of making the right choice

Hi ladies - I had IDC stage 1 grade 2 ER and PR positive, HER2 + diagnosed in June.

I have had a lumpectomy and two lymph nodes removed. I am currently 3/4 of the way through chemo, I'm having Herceptin injections (18 over the next year), will start radiotherapy in October and then have hormone treatment. Sounds a lot of treatment but I consider myself lucky that it's all available. My view is, why would you not give yourself the best chance of beating BC. Ok, so chemo is no fun but you get through the SE's and at the end of the day when treatment is all finished you can sit back and say you did all you could.

Good luck with your decision making 😘

Ruby x
Mel66
Member

Re: unsure of making the right choice

Hi melykins
I just ran your figures through the NHS Predict tool and the benefits to having chemo is an extra 3.8% over 10 years. (If you want to do this yourself, google "NHS Predict") As you had 2 tumours, I just used the larger, stage 2 in the calculation. Not sure if having the other in addition would change the figures.

Don't know if this helps your decision at all? X
melykins
Member

Re: unsure of making the right choice

Thanks Murphy 1963... For me it is 3 weeks to decide 

 

I am at work next week then go to Istanbul for 2 weeks .. I wanted to speak to my boyfriend regarding the issue as my decision first and formost is my health but if I have chemo this would delay our wedding by 1 year and also emigration plans as well

 

I was all set (wedding dress in the wardrobe etc) when I got the blow about cancer. This holiday next week was to book the venue, flowers , reception etc and now it is a holiday only .. At the same time of the cancer my house I was selling fell through when the buyer pulled out and then I had to ask my employer for my job to continue as I was going to leave 31..10.2014, in order to get married this November coming (they made me stressed over it) I was just diagnosed the day before and they basically had no sympathy 

 

As you can see I got lots on my plate right now and a little overwhelmed by everything and hard to make the right decision right now. Thanks anyway for the support and I let you know my final decision // I got to tell the doctor by 6 October 

Murphy1963
Member

Re: unsure of making the right choice

Hi weeannie1 and melykins my problem was that the oncologist wouldn't comment on what she would advise a family member to do, she gave me the facts and said it was my decision and come back in a week. I tried to get her and the BCN to comment but they simply wouldn't. I have based my decision on the oncotype dx test that debtex had as her percentages using the predict tool were exactly the same as the small percentages I was quoted, however her onco dx came back with 15% without chemo and 6% with chemo!!! I know this was personal to her but who's to say mine wouldn't have been the same or even more?!?!? I have also spoken to a work colleague who was advised to have chemo, same circumstances as me, and she hasn't regretted it.

You are a couple of days behind me in your decision making process melykins, it defo is not an easy one to make. I have phoned Macmillan, my BCN twice, and trawled the internet, but late Friday I just decided I had to go for it. My BCN said to take numbers out of the equation, how would you feel a few years down the line if you didn't have chemo and your breast cancer came back and how would you feel in a few years down the line and you did have chemo and your breast cancer came back. I got my answer!!!!

When do you need to decide by? Pm me if you would like to talk more, but let us know how you get on.

Hugs xxx

melykins
Member

Re: unsure of making the right choice

Thanks for some good advice Ann and your situation seems very similar to mine. Yes it is a bit difficult been left with such a big decision in my life.. My biggest fear is the damge the chemo can do to my body and yes everyone reacts and recovers from chemo differently . Just frightened I be the one who is damaged permantely from chemo 

 

Thanks anyway and hugs back 

 

Melanie 

Weeannie1
Member

Re: unsure of making the right choice

Hi melykins,

I too was in a similar situation to you. I was diagnosed with grade 2 invasive lobular cancer ER+ HER- in November last year. Was told that the lump was approx 15mm and that I would require a WLE and sentinel node biopsy, to be followed by radiotherapy. However, when the lump was removed, it was 37mm, not the expected 15mm. My surgical team were still saying that I would just need radiotherapy, but my oncologist ran my data on the adjuvant tool (they use this rather than predict in Aberdeen) and he insisted on meeting me to discuss chemo. I went along with an open mind and listened to him explain why he thought chemo would benefit me. He said the ultimate decision would be mine, but if I were a member of his family, he would recommend that I went with it. I decided to go with his recommendation and underwent 6 cycles of fec75. I remained quite well during chemo (even managed to walk 26 miles on the moonwalk half way through) although it was tough going. I finished my chemo in July and have now completed my radiotherapy. I don't regret opting for chemo one bit. I just think that I have given myself the best chance of preventing this horrible disease coming back.

Strangely enough, when I ran my figures through the predict tool used by the nhs, I would not have been a candidate for chemo.

Hope this is of some help, and I wish you all the best whichever treatment option you choose.

Big hugs. Ann x x
Debtex
Member

Re: unsure of making the right choice

Glad my test helped . I don't know why or how I got it though ! Enjoy the rest of the weekend x
Murphy1963
Member

Re: unsure of making the right choice

Hi debtex, it was your figures that decided me. I am sure we have made the right decision. I go back on tue so will defo keep in touch as we will probably be going through this journey together.

Sounds like you had a lovely day with your family. My little boy was on the first cub camp this weekend so we've been childless and had a good chill out. Will let you know how tue goes xxx
melykins
Member

Re: unsure of making the right choice

Murphy 1963 - I feel lost and cannot make a decision .. I feel total meltdown as well. I just feel I do not want to have all this poison in me and damage me for good. 

 

but then I know it can increase my survival a tiny bit extra 

 

I just feel abandoned by the NHS and Macmillan Nurses on this decision 

Debtex
Member

Re: unsure of making the right choice

Murphy just read your post and u have decided ! I had a meltdown last might and cried myself to sleep but today I took my daughter to a horse show , the sun was shining and I was with my family and friends , whilst I felt upset inside I thought ' this is worth fighting for ' . Keep in touch with me re your chemo my first is 26 th sept xx
Murphy1963
Member

Re: unsure of making the right choice

Hi melykins. I am in a similar situation to yourself. I am 51 and was diagnosed after routine mammogram in July. Had WLE and SNB 20 august. Results meeting I was told they had clear margins, no node involvement, 9mm idc, grade 3. I saw oncologist on Tuesday and was told I would be having 19 days rads, tamoxifen for 5 years and letrozole for a further 5 years. Chemo was also offered although the percentages they presented using the predict tool were small. They wouldn't advise either way whether I should have chemo. I have asked for the oncotype dx test but have been told the trial for this has been suspended (although cancer research have said it is still ongoing). I couldn't afford to do the test privately.

After a couple of meltdowns this week due to a feeling of hopelessness as to how are you expected to make this decision without the knowledge and understanding I think you need, I have eventually based my decision on real life people who have been through or are going through this, with similar circumstances to myself. I have to go back to oncologist this tues with my decision which has to be I am taking the chemo. If the cancer comes back in the future at least I will have done everything in my power to have tried to stop it. I don't want to be wishing in a few years time I wish I had done this. I have a vomiting phobia so this has not been an easy call but that's another battle!!!

Good luck with whatever route you choose, not easy xxxx
Lucy_BCC
Member

Re: unsure of making the right choice

Hi melykins
Welcome to the BCC forums where I am sure you will find support and shared experiences, please also feel free to call our helpliners to talk through the concerns you have, lines are open weekdays 9-5 and Saturday 10-2 on 0808 800 6000

Take care
Lucy BCC

melykins
Member

unsure of making the right choice

Hello I am from UK and with the NHS we do not get the ONCO  DX test as too expensive on the NHS , if done privately it would be £2000 (just wanted to point this out)

 

Can I ask peoples opion who had or going through cancer 

 

Yesterday I was told the stats at hospital by the doctor of the outcome if me taking chemo or no chemo for my breast cancer 

 

Out of 100 people if they did not take chemo but did have radiotheraphy and tamoxifen then 94% would survive the 10 year target and beyond would be s similar rate... 6% would not however.

 

That getting any type of cancer within the next 10 year target and beyond would be 11% and 89% would not 

 

Taking chemo would slightly increase the chance of survival or recurrance

 

Because I am going on holiday next week I have 3 weeks to make my decision but I unsure which way to go.. Anyway my diagnosis -  Cancer was got in early stages and throughout the biopsies, ultrasound mammograms and after surgery for lumpsectomy my doctors have all said I have a good prognosis for my future

 

I had breast cancer in both breasts and it was my first ever mammogram at 49.. I had no symptoms or lumps. After surgery my lymph nodes showed to be all clear and margins all clear as well.

 

The tumor in the right breat was a Stage 1  Grade 1 (13mm) invasive ductal carcinoma and the left Stage 2 Grade 2  35mm solid papillary carcinoma.. Both slow growing, are HER2 Negative and ER positive and this can be sucessfully treated with hormonal theraphy. Doctor said they have no evidence that it is in blood vessels are anywhere else in my body

 

I was only referred for chemo because I am 49 and will be 50 this October coming.  They see it as a belt and braces insurance and age is against me not the cancer itself 

 

What does people think and how did you come to your decision when you had to decide about chemo?