Newbie: Feeling a bit pushed into making Chemo deicision...

Hi there, new girl here, just back yesterday from appointment with Oncologist, trying to deal with the prospect of toxic drugs and their side effects and the implications of 15 months plus of treatment……
I am 55, I was diagnosed with breast cancer in April follow a routine mammogram. Following all the usual checks, tests and a lumpectomy 3 weeks ago, including removal of 2 lymph nodes, I have the results and treatment plan in black and white in front of me and to be honest, I’m scared, angry, anxious and dreading the thought of what I may be dealing with in terms of the side effects of chemo.

My tumour was a grade 3, 35mm, stage IIa, Invasive, ductal and ductal carcinoma in situ. Hormone sensitive +, HER2+. Lymph nodes clear. I got my head around the surgery and radiotherapy treatment, but chemo was always my main concern (as I’m sure it is for many) and didn’t believe I would have to go through it. However as I now know, the HER2+ status has made all the difference, lucky me, only 20% of women have this.

Along with my partner, we met with the specialist yesterday, who obviously explained everything and did a good job of convincing me, albeit reluctantly, that chemo and Herceptin treatment is my only option, together with radiotherapy. I had lots of questions naturally, particularly as I had heard about and researched the OncoType DX test and implications of my cancer being linked to immunosuppressant medication which I have been on for 5 years to treat rheumatoid arthritis and an inflammatory eye disease (I lost the sight in my left eye 8 years ago to Uveitis). The HER2+ result immediately negated the benefits and eligibility for the OncoType DX test, no point, I am by definition at high risk of recurrence so chemo Taxotere, Cyclophosphamide and Herceptin are the way forward……

After a meeting lasting 1.5 hours I reluctantly signed the consent form which I can only compare to signing an insurance policy, which I know it is. I am trying to concentrate on the long term benefits of the treatment, but because at the moment, I am perfectly fit and well, the prospect of having to put these drugs in my body, the side effects and implications is simply hideous, I’m not ill !!! But I’m going to be and my worse fear of all is of course the hair loss, I’m not vain, but I can’t bear the thought of what’s to come. I would have liked a bit more time to make the decision or at least been offered that as an option, I do feel rather bullied into signing the consent form, even though I know, or I’m trying to convince myself it’s for the best. I’m sure there are 100s women out there who have faced or facing the same if not worse situation, I would love to hear from any women who have had the same treatment and who maybe able to offer me some consolation.
Thank you
Trish

Hi Trish and welcome to the BCC forums

In addition to the support and shared experiences from your fellow users please feel free to call our helpliners to talk through your fears and concerns. Lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000

I am posting a link to the ‘Just diagnosed’ and ‘Treatments’ pages where you will find lots of practical information and further support ideas from BCC such as ‘Live chat’ and ‘One to one support’:

http://www.breastcancercare.org.uk/diagnosis?utm\_source=Homepage&%3Butm\_medium=help\_you&%3Butm\_campaign=diagnosis

http://www.breastcancercare.org.uk/treatment?utm\_source=Homepage&%3Butm\_medium=help\_you&%3Butm\_campaign=treatment

Take care

Lucy

Hi Trish,
I’m so sorry you are in this position, i can’t offer any advice at the minute as i haven’t been given my treatment plan, this will be tomorrow, i’m 42 and have a tumour in my right breast, which i’ve been told is almost certain to be cancer:( Like you the thought of Chemo is what really scares me, and if that makes us selfish then so be it! I don’t want to lose my hair and don’t want to get sick from the side effects especially when i have a job which i love!:frowning:
I also fear being bullied into treatment, and may not be given other options as i’m sure there are some out there? Of course we all want to live and enjoy a cancer free life, but on top of having this unfair and appaling disease we have to contend with all the nasty side effects as well! It all seems so unfair, and my experience so far i wouldn’t wish on my worst enemy!:frowning:
I’m sure you will be fine with the treatment as from reading on here, we all find an inner strength and the will to beat this evil thing that has invaded our bodies! I wish you all the luck and sending hugs for you :slight_smile: xx

Hi Trish,
I am due to start chemo soon (got my talk and assessment tomrrow) I had 12mm lump, margins and nodes clear. My BCN told me at the start to expect chemo regadless due to my age (33), but then it was also confirmed mine was HER positive so have to have chemo anyway so I can have herceptin. I totally understand where you are coming from. The thought of surgery and radio is a lot easier to deal with than the chemo, plus I know I am going to cry like a baby when my hair comes out. That being said, the onc has told me this is the best way of making no stray cells haven’t gone walkies in my body, and the best chance of preventing it coming back. I know that we will still worry about it coming back anyway, but I will know that I have done everything I can to prevent this.
Have a read through some of the threads on here about chemo, it’s not nice but the ladies are getting through it and on the road to recovery.
Take Care
Faye

I finished chemo in April, and did not lose my hair, after using the Cold Cap.

I had grade 2 IDC, with no apparent node involvement, so was not expecting to have to do chemo, but after the WLE, they found a single micrometastasis in my sentinel node, and gave me the choice of complete node clearance OR radiotherapy to the armpit OR chemo, and because I am a swimmer and very scared of the high risk of lymphoedema with the first 2 options, chemo was, ironically, the least bad option.

I say ironically because I had spent the last 20 years swearing I would NEVER have chemo after my first husband died at 32 from a respiratory infection after his immune system was nuked by chemo for leukaemia. In the end I agreed to it because of a) intense family pressure b) the fact that it added 7-8% to my long term survival probability and most importantly c) the fact that having done chemo I will know, should the cancer return at any point, that I did do everything possible to keep it at bay.

I still pretty much had to be escorted into the chemo ward kicking and screaming, and that was after delaying it for a month because I felt so physically and mentally beaten up after the diagnosis and the surgery that I didn’t feel ready to be assaulted in another way so soon. There was no problem with me delaying for a month and it meant that when I started the chemo I was as ready as I would ever be.

I had 6 x FEC, and had an unspeakably bad time, fairly viscerally recounted in my blog chemonights.blogspot.co.uk/, on which I posted daily for 134 days of chemo - it was the only thing that kept me sane.

Having said that, not everyone does have such a bad time - lots of women on this site describe chemo as ‘doable’ - not everyone does lose their hair, if they use the cold cap, and this site offers a huge amount of information on how to anticipate and deal with the side effects of chemo, as well as psychological support from people who are going through it at the same time as you, and from those who have already finished.

Am I glad I did the chemo?

Yes.

I hated Every Frigging Minute of it, but it was only 5 months of my life, and now I’m feeling perfectly fine, and the chemo is starting to seem like a bad dream.

There’s no guarantee that the cancer won’t come back, but I know I’ve done everything I could to prevent that happening. And I’ve even stopped being so angry with the oncologists now…

Thank you so much for your post, your words are ringing loud and clear in my head and I know this is exactly the kind of support I’m going to need. At the moment I am so angry (with the Oncologist as well!) I feel I am not in control, I have no choices, or options, only chemo, that is what I struggle with particuarly as in my mind, I don’t have cancer and the treatment plan seems to be so over the top and exteme, which I guess must sound naive.

It’s so encouraging to hear your story, thank you so much.

Trish x

Being angry is entirely normal in this situation, and the loss of control over my life is also the thing I found hardest to deal with.

I was very angry and more or less demented for some time after my diagnosis - like you, I was feeling very healthy and the shock of the diagnosis was enormous. My brain found it very hard to accept that however fit I was feeling I did, nevertheless, have a life-threatening disease.

The length of the treatment seems formidable at first: someone told me not long after I was diagnosed that you essentially have to give up a year of your life to breast cancer and its treatment, and that is, sadly, true. It’s very, very hard spending your whole life going to hospital appointments and horrible cancer treatments for month after month, but there’s really no alternative - I started to do a lot better mentally when I finally accepted that a) i actually was ill with something that would kill me if left untreated and b) that the loss of control and the feeling of belonging to the doctors and the hospital was something I just had to put up with in order to be healthy again, and get my life back in due course.

It’s very hard to take at first, though.

I was diagnosed in September of last year, operated on in October, and finally started chemo in mid-December. After chemo I delayed the start of radiotherapy for a couple of weeks so that I could go on a trip abroad planned long before the diagnosis (a post-chemo holiday is highly recommended, btw, before starting rads. Good to get completely over one treatment before starting the next one).

I started radiotherapy on May 21st, have had 11 doses so far - it is a walk in the park compared to chemo - and will have the final dose next Tuesday.

AND THAT IS THE DAY I WILL FINALLY GET MY LIFE BACK AND BE FREE FROM THE HOSPITAL.

I can’t wait. I will have to take Tamoxifen for five years, or possibly ten, of course, but the Year of The Hospital is now drawing to a close. From next Tuesday onwards I will simply be getting stronger and more healthy every day, and getting on with my life again (touch wood, God willing, inshallah, whatever), with a check up now and then.

When all this started last September I thought ‘I have lost control of my life and I will never get it back’, but I was wrong.

You DO get your life back, but you have to go through some really unpleasant stuff first.

But IT WILL END, and it will go more quickly than you expect. I’m finding it hard to believe that I’m already nearly out the other side of treatment.

Good luck!

Trish, I had a similar decision to make on Monday. I was eligible for the oncotype dx test and paid privately for it (i.e. ER+, no nodes involved, HER-). I am only just 40, so chemo was always going to be on the cards. So we did the test, and I came back as relatively low risk for recurrence- but not low enough for me to decline the additional 3% chance of being here in 10 years time that chemo might give me. So after all that (and considerable expense) I am still going to go for chemo. More of a heart decision than a head one perhaps, but I want to know I did all I could. Then if it comes back, it comes back, but I wont have the ‘what ifs’.
I’m under no illusions that it will be easy and I know there are additional risks from chemo. But I think this is the right decision for me. I havent yet decided if I’m going to do the cold cap or not, but may give it a go. There are also some lovely headscarves, turbans and hats out there too - some good wigs, and even eyebrow wigs!!
Good luck
Jackie

Hi Trish,

So very sorry you have to be in this awful position. Like you, I have RA and for several years I’ve been having a once weekly injection of Methotrexate 25mls to knock my immune system out. I also have several other health problems which impacted on my decision to have chemo.
However, as my tumour was ductal invasive, 36mm and grade 3, stage 2b. 100% ER positive, 75% PR positive but HER2 negative (so no herceptin) I went ahead with the treatment. I was supposed to have Fec-T, 3 session of fec and 3 of tax, but the tax really didn’t agree with me so went back on to fec. I had my last session on 23 May and am now waiting to start Anastrzole tablets for five years.
Most people I know preferred tax to fec and I know a couple of ladies having herceptin who are coping very well with it. May I suggest that you have a read of some of the posts in the ’ undergoing treatment - chemotherapy’ threads. I am a February Valentine, but there is also a March group, April group, May group, and I believe the latest is for those starting chemo in June. This will give you an idea of how others have coped with their treatment. It might also be a good idea to join one of these groups when you begin your treatment as you will have all the advice, help and friendship you need.
At the top of the chemotherapy thread, there is a ‘sticky’ post full of advice and information on what you might need to help you through the treatment. The most important of these is a good quality digital thermometer.
Good luck for your treatment. Sending you big hugs and best wishes.

Poemsgalore xxx

Trish, I am currently in the middle of chemo and understand where you are coming from. The only thing I would say is that for most people chemo is nowhere near as bad as what you would imagine. My image was from what you see in TV movies but the reality is quite different. It’s amazing how quickly your treatment becomes your ‘new reality’ and you just get on with it. At times, it can be harsh but as others have said, as soon as you get your head round it all it actually passses quite quickly. I can’t believe I am half way through now!
Hope you get your head round it all soon and make the right decision for you
Pauline x

Trish, I really feel for you as I remember the same feelings. I had a WLE and sentinel nodes removed in July 2012. I had no spread to my nodes so thought I would get away with rads, tamoxifen and herceptin but on analysis the grade of my tumour (can’t remeber size and grade ) just took me into chemo territory and as I was only 44 they wanted to throw everything at it to stop reoccurrence. Like you I’m really not vain but the thought of having no hair and feeling ill for no real reason shook me to the core. I decided that I would take back some control . Before treatment started I stocked up on all remedies such as laxatives, Ginger biscuits etc, immodium and everything that people on this wonderful forum recommended. I went to a really good but not too expensive wig shop and asked for a wig which resembled my hairstyle and colour. When I returned home and put the wig on noone even noticed (and I have a daughter who is training to be a hairdresser!!) so I knew I had a good match. I decided to try the cold cap but with the view that if I didn’t like it I would stop as my wig was fine and I was surprised that I was quite confident in it. I still lost about 70% of my hair but the actual cc was fine after the initial 10mins I would forget I had it on. Because my hair went so thin I have worn my wig daily and very few people have given me a second glance. I finished my chemo (6fec) on the 19th Dec 2012 and now have a covering of at least 31/2 inches all over and i think it is about the same thickness as before and I think this is down to the cold cap. I am about to have my first haircut and then my wig will be put away. i know all the words in the world won’t make this journey any easier but it really isn’t as bad as you think and for me the time has flown by. Good luck and take care
Lol

Trish, I was diagnosed in January 2012 and to begin with was terrified at the thought of chemo, however, my nurse advised because of my age (43) chemo was advisable. I only had a 19mm grade 2, micromet on one node but very quickly began to realise that a few months of pain could potentially give me an awful of of gain. We’re all terrified of losing our hair, but I decided for many reasons against using the cold cap, and it was extremely distressing when it fell out, however, you adapt to it very quickly and soon becomes the new normal. I was never particularly ill through chemo and continued to work whilst also looking after my 4 year old daughter, not everyone has a bad time. We are all extremely lucky to live in a country where chemo and Herceptin is given freely, please see it as a benefit, this treatment could save your life.
Take care
Lydia

Hi Jackie

Thank you for posting, all hugely appreciated and helpful. Good for you to go ahead with the Oncotype DX test, I would have had it but the HER2+ result poo pooed that idea, just not worth it. Can I ask what score you had?
I will definitely be trying the cold cap, anything to avoid hair loss, my biggest concern, more when and if it actualy happens and physically falls out, I just can’t bear the thought of going bald. I know there are lots of wigs, scarves and various accssories on offer and in time, I will start looking into this. I’m not so tearful and angry today, so I guess I’m already dealing with it all better but totally dreading what’s to come…

Good luck and keep in touch.

Trish x

Thankyou Pauline, can I ask what cancer and treatment you are going through and experienced side effects, have you had hair loss???

Trish x

Thank you so much for your reply and interesting to hear from another RA sufferer and Methotrexate user. I would still like some answers around my current meds and if these had/have any link or connection to my HER2+ status. I’m meeting my RA doc next week.

Same questions I’m afraid, I must sound so shallow, have you had hair loss, used a cold cap??

Trish

Thank you Lol, really encuraging words and you made me smile (your daughter/wig bit!). I have lots of reading to do on here in terms of recommendations. Did your hair simply thin and break or did it fall out? I have very fine hair which has recently been thining due to over processesing (colour) and straightening so I’m convinced it’s just all going to fall out! Someone told me (Nurse) that CC is less effective on thick hair, which I certainly don’t have, so unsure how much truth/evidence there is of that…

Trish

Wise words, thank you Lynda and good luck.

Trish

Trish, I know many women are scared of hair loss during chemo. The way I looked at it was that every hair lost was another cancer cell destroyed. I also saw it as a ‘badge of honour’ that I was doing all I could to beat the cancer. But if you give cold cap a try, as suggested, there is a very good chance that you might not lose too much of it.
Also, my hospital gave us all a voucher for a free wig. I know not all hospitals do this, but if you do get one and buy a wig, it will be back up should you lose more hair than you are comfortable with.

My biggest fear was having nausea and sickness. Thankfully I never had any.

PG xx

Thank you Cazzar, I’m finding the post and replies so helpful, I hope you do too. Havre you had your meeting and treatment plan explained, how are you feeling? Crap no dount, like me…

Trish x

Good to hear PG, I don’t remember suring from morning sickness when I was expecting, although it was 20+ years ago, so I don’t know if that has any relevance. I’m going to get a wig anyway, lots of choices there but still hope I won’t need it, time will tell…

Trish x