waiting for dx told cancer in breast will discuss treatment

Hello Elliedog

I am pleased you have your results but of course sorry you find yourself here.

I was diagnosed in january 2012 and have just had my first mammogram so waiting for results from that - even scarier than forst time around as I no longer have the cushion of ‘ignorance being bliss’.

The reason I am responding to you is you mentioned you are herceptin 2 and i can tell you more about that.

We are tested for something called epodermal human growth factor, this is a protein that attaches itself to our cancer cells and encourages them to grow very quickly. If you have this, your cancer type is known as HER2+. Abut 25% of breast cancers fall into this category, most of them are oestrogen negative (ER-) or mildly ER+. I am a bot of an anolmaly as am 100% ER positive as well.

HEr2+ cancer are treated with a drug called herceptin which is given intravenously every 3 weeks. the standard treatment is for a year - so that is 18 treatments. I am on number 11, so it does make it a long old haul. however, herceptin has none of the side effects associated with chemo. You do not start herceptin until after chemo has finished if you are on a FEC regime. If you are having Tax, your herceptin will be given toward the end of your tax.

there are specific threads on here for HER+ ladies and you will find these under the section called 'targetted therapies.

I underwent surgery, chemotherap[y, raidiotherapy and am still doing herceptin and take endocrine tablets every day to address the ER+.

The thing I have learned is that all this is do-able once treatment starts as we get into a routine. We only have to deal with one part of our treatment at a time and believe it or not, time does pass quickly.

I used this forum an awful lot whilst undergoing chemo and it was invaluable for me. We have become a very close group of friends who now hang out on facebook where we don’t get moderated ( means we can bitch about what we want)

We have all come out the other end and are getting well again, so much so that in May, 12 of us are doing the Breast cancer care 10 mile walk at Blenheim palace.

Cancer treatment will change your life remarkably but if you focus on all the good stuff, and being able to have this treatment free of charge is very very good, life can become richer in other ways. get a group of buddies going on here, it usually works by joining the thread for people starting chemo at the same time and you will find that your journey although tough at times, isn’t half as bad as you imagine.

Good luck and warm wishes

pixie

Hi Pixie. That was so helpfull.Although the BCN nurse explained this to me yesterday I just couldn’t take it in you have made it alot clearer now that I am a little carmer. I have already found that there are plenty of people willing to give advice and support which I have found so helpful. I am not on facebook but I am thinking that is maybe another way to try and keep in touch with people.Thanks again for the info it has given me a little more knowledge and confidence to ask questions. What you have described with reference to the HER2+ sounds very much like the route I will be going down according to my BCNurse. Finding that a bit scarey as it makes me feel like I might have a harder fight ahead of me but I know that is just my mind going into overdrive again . Just need to put things into perspective.Its great your doing the 10 mile breast cancer care walk I hope I am in the same position soon. Keep well and lots of hugs.xxx

Hi everyone. Can someone out there give me some positive information about being HER2+. I know what HER2+ means (thanks to information given by the lovely people on this site) but I don’t seem to be able to find any positive outcomes.I’m not sure if that is because people who get better stop going to these sites or is it because HER2+ just isn’t a good thing. Can someone out there give me some positive feed back. Thanks for listening.
Elliedog

Hi Elliedog,
I don’t post very often now, but you wanted positive feedback on HER2+ so I hope my story will help.
I was dx in November 2010. I had a 45mm Grade 3 tumour which was HER2+. No spread to nodes. I had dose dense chemo (4 x AC and 4 x Paclitaxol) every 2 weeks to shrink the tumour. People talk of a good third week. I never had that. I then underwent surgery - sentinal node and wide local excision. Following that I had 20 sessions of radiotherapy and all the way through I was having Herceptin.
I went back to work about a month after radio. I work in an office but have a 2 hour round commute into London. I juggled working with every 3rd Wednesday going to the hospital for 9am, having Herceptin and then dashing back to work, getting to the City for around 10.30am.
2½ years later I am still here and treatment is a distant memory now. I sounds quite simple when written above, whereas at the time it was a long drag. But healthwise everything is as it was before now.
So there is hope. I too was mainly worred at the beginning about the size of the tumour. But my surgeon said size does not matter in these cases. Apparently HER2+ tumours are often large and seem to appear overnight. However he also said that they respond excellently to chemo and shrink to nothing just as easy.
If you want any more info just message.
Take care.
Samantha

Hi SamLee. Thankyou for your positive words. Although I know I have to be positive some days it is difficult if you don’t have positive feedback. I am so glad to hear you are doing well and that makes me more determined to get through the next few months. I have decided to have a mx which will be carried out on the 21st March. I’m then told that should be followed by chemo possibly with the herceptin or they may wait till I have finished their not clear on that yet. Do you have to take any medication now and how often do you have to be checked. Hope you don’t mind me asking.Once again thanks for the positive vibes, it’s good to know you are there.
Ange

Don’t mind you asking at all. I had check ups every 3 months whilst on Herceptin and following surgery I had check-ups with the surgeon every 6 months and then in October last year when I had my 2 year mammogram and appointment with the surgeon I only have to see him now every year so I won’t see him until October this year. I had all my treatment privately with Bupa so I don’t know if that made a difference with the check-ups.
I don’t take any medication now. I was only slightly ER+ so I tried with Tamoxifen but the side effects were horrendous so I made the decision not to take it. I know that increases my risk slightly of a recurrence but it is a risk I can live with as I threw absolutely everything else at it.
One more think I forgot, a lady I work with had exactly the same type of cancer 8 years ago and she had Herceptin then when it was still very new and she is still here, alive and well. She will be celebrating her 50th birthday this year and she was dx at 42, the same age I was at dx.
So please try not to look too far in the future now, just concentrate on each bit of the treatment at a time. I did and it certainly helps to look at it that way.
Samantha

Dear SamLee
Thank you so much for getting back to me so quickly. I t really does make a difference at this stage in my circumstances to hear good news stories. It was good to hear that the visits with c heck ups will eventually carm down and I won’t feel like I’m living at the hospital.I can’t wait to get to that normal feeling, going to work,not thinking about it every minute of the day. I know I will get back to that moment in my life again because I have so many positve people around me. Part of me can’t wait to get the surgery out of the way and the treatment started so life can begin. Hope you don’t mind if I post you occasionnally and if you need someone to sound off to you are more than welcome to post me. Thanks again.
Angela

Elliedog (Angela),
Happy to help. If you need to ask anything anytime just message me. I may (or may not) be able to help but sometimes it just helps to speak to people who are in or have been in the same situation.
Samantha

Hi Littlescoot.
Just wanted to say i will be thinking of you on the 21st March. I hope your feeling as carm as you can be, I know I keep having little moments of panic although I know this is all for the best and when I really think about it I can’t wait to get this horrible tumor out of me.We are doing the right thing and in a couple of years time we will look back and know that although it was tough for a while we came through and life will be good.
Lots of hugs
Elliedog xxxxx

Hi Elliedog,
i too have been thinking about you and I hope everything goes really really well for you. I’m resigned to it now and have kind of mentally detached myself from the one that’s going. I just want the cancer out of me and to crack on with the next stage. I totally agree with your last sentence. Life WILL be good again. This is just a blip in the pathway.
Good luck and (((( big hugs))))) -whilst we still can! Xxxx
mandie xxx

Hi Littlescoot,
Not sure if my last post went through doesn’t seem to be showing up.Glad to hear your doing well. I came out on Friday with a drain in which I still have in unfortunately but otherwise feeling better than I thought I would. I feel like a weight has been lifted and ready for the next stage. Spoke to my BCN nurse and she mentioned possibly going on a trial that would run along side my treatment but we will talk more about that at my appointment in a couple of weeks.Otherwise feeling positive I hope you are to, before your know it time will have moved on and we will be feeling more like ourselves. Keep in touch and let me know how you are getting on. Lots of hugsxxxxx Angela

Is there anyone that can give me some advice please. I have been asked to go on a trial during my treatment (had mx,start chemo x6 next week,herceptin,rads.tamaxfen 10years). Iam having various tests for the benefit of the trial and one of them included a bone scan. The scan has come back with something showing on my right leg but the results say it is benign. Although I know the meaning of benign I still had to ask the nurse does that mean I have not got cancer in my bones. She said that was the only area where there was not a clear picture and it has come back as benign but because I am entering the trials they need a clear picture but means I do not have cancer in the bones it is likely to be old damage (I have had a couple of car accidents) or a bad picture. However I still have to go for an ultrascan so they can see what it is. I know I am reading into everything and everyone says it is a good thing that Iam in a trial, I can help the studies and they will watch me like a hawk. But do I want to be watched this closely if it means I jump to conclusions at every moment. My onc is very postitive about my future (even said we want a cure out of you, of which I said was not possible and he precided to give me a good talking to). I am 43 and both my surgeon and onc have said the treatment I am having is proofen to work and they expect me to be here for the next 20 30 years and beyond and that because I am young, healthy then I capable of taking this type of treatment.So why am I not believing what everyone tells me. Is there anyone that is on a trial or has knowledge of the trials. Am I doing the right thing or will I carm down once my treatment starts. My nurse said I will feel better when my treatment starts (a little more in control). She said it was understandable that I felt like this and that I could ring her any time (she is very good, as is everyone at the hospital). Sorry for the rant but I would love hear from anyone with any advice. Thanks for reading and listening. Angela

Hi Angela,
Well they don’t call it a rollercoaster for nothing. Mood swings?? You may expect to go from being completely in denial to wildly optimistic to rehearsing your own funeral … this might happen several times a day! I’m sure it makes it incredibly difficult for those around us to deal with, but c’est la cancer! We all have to deal with it. You will eventually find a more even keel, but these emotions can still sneak up on you, so bear that in mind.

Regarding your being on a trial (you don’t say what the trial is?)… I consented to a trial myself. I am er/pr/her2 negative, so targeted therapies are not normally an option, but it turns out that I am actually her_2 level 1, so weakly positive, and the study is to see whether giving herceptin in this case will improve outcomes.

All fine and good, except I was randomized into the control group, which is NOT to be given the drug. They obviously have to inform participants in this case, as a blind trial would not be possible unless they insisted we all come in for a year for a secret saline infusion instead of herceptin. Probably that’s unethical! :slight_smile:

Anyway, though initially somewhat disappointed, I consoled myself with the thought that there’s no proper evidence that herceptin would help (hence the study), and the benefits from being on the study from my point of view is that I am going to be under a magnifying glass for the duration of the study, which I am very happy about, as my risk of recurrence in the first 5 years is really scary.

In your own case, with the area on your leg. It’s great they saw it, it is great that they do not feel it is a malignancy, and its really good news, that being on the study they will look at it again and see if there are any changes. So try not to worry about that!

My CT showed a “spot” in my lung, which was “indeterminate”, and caused me some concern, but I recently had a further CT (developed clot iny lungs - another story), and they happened to look again at my “spot”, and there is no change, so its probably nothing to worry about! I’m still happy they are monitoring it though! :slight_smile:

Good luck with your treatments.

M xx

Hi Morweena,
Thanks for your post. I do struggle at times with myself and people do say in time I will settle more. The trial they are conducting all the tests for is called The Aphinity Study. It is a study of the pertuzumab drug which may be given with my chemo and Herceptin. I say maybe because it is a blind study and a computer decides if I recieve it. Iam told it is being given to those with primary BC and are HER2 - positive at present it is only given to those who have secondary cancer.Its good to hear someone elses persective on the trials and it does confirm I am doing the right thing. I understand about those first 5 years and reoccurance but at the moment I still have treatment to consentrate on. I hope your treatment continues to go well and that our security blanket continues to get us through.
Lots of hugs.
Angela

Just come back from having an unexpected ultrasound of my liver. Came back that the area had characteristics of something beginning with a H which isn’t cancer. But because I have been dx with BC they have to send me for a MRI scan to get conclusive evidence. So to me it could still be cancer. Consultant doing my ultrasound said that in his oopinion he thinks it is unrelated to my BC but because I have had BC again he has to send me for an MRI for 100% evidence. Spoke to nurse who confimed what the consultant said and is trying to get in for my MRI asap. She did say that cancer usually shows up on a ct scan and an ultra sound so I need to be positive because it pointing towards this other thing beginning with a H which is nothing and something most women have and doesn’t need treating. So am I over reacting again or am I looking at secondry cancer. I don’t know who to believe or what to think can’t bare the thought of cancer in the liver. Im 43 with 2 boys I want to see them grow into adults not watch their mum becoming worse and worse. Sorry for the rant head all over the place.
Angela x

It really doesn’t sound as if it is secondaries. I also had some cysts of some description in my liver and I think also a kidney (?) that showed up on my CT scan. I was told they were not cancerous, and as my sister-in-law was told the exact same thing, I have accepted that I really do have no signs of secondaries. Once you have had the MRI I’m sure your mind will be eased … until the next scare.

Isn’t it easy to obsess over this?. I can’t tell you not to worry, we all worry, but you need to find a way to let this go, if you can … is there counselling you can draw on, or even some anti-anxiety meds from your go if this worry is really getting the better of you…?

Ps. Most all things concerning the liver start with an H! :slight_smile:

Thanks Morwenna. Just sat and had a little cry reading your post, needed to let it all out. i suppose I just needed someone else who has actually gone or going through this to talk some sense. Your right i think counselliing would be a good idea. Im starting to think I have over reacted and should listen to what the consultant said otherwise he probably wouldn’t of said it and wrote it in his report. I wish I had wrote down the name of the word beginning with a H feel so silly not knowing now.How did you cope with the possibility of secondaries ? I’ve just got to grips with my BC. Hope the MRI comes quick then I can deal with it. Thanks for listening you have been a great help. Lots of hugs.xxx

Hello Angela
i was diagnosed with Her2 ++ breast cancer last November so I am just a few months ahead of you. I live in france so have been getting all my treatment over here. I had a lumpectomy, then was told I would need chemo, rads, herceptin and then tamoxifen. I was asked to go on the aphinity trial which I consented too. I think being on a trial is a good thing as it will help others. Unfortunately of me I was unable to go on the trial as by blood results for my liver had not returned to normal quickly enough after my op etc. I was disappointed but also terrified as although I had had bone scans, ct scans, ultrasounds etc done and all clear they decided to give me another ct on my liver to make sure all was ok. After a worinning wait for the scan I was shown immediately afterwards that all was ok. My liver had just taken a battering form anaesthetic, nuclear drugs, etc put in me and needed more time to recover.
i am nurse so my mind goes onto overtime with worry as a bit of knowledge is not always a good thiing.
Please try not to worry, even if you do not do the trial you are getting the best treatment, and you will feel a lot more in control when it all starts happening. The waiting is the worst bit.
please feel free to pm me if you want to chat and keep in touch as having someone to talk to is so important.
hugs and love Karen xx

Hi Wattie.Thank you for your lovely post. I know my mind is going into overdrive and i am not thinking straight but all the way along the doctors have been positive about my BC and that helped me to think I can beat this but an MRI seems so scarey. Everything that was said to me today just isn’t registering and I can only think the worst. I am sure they are doing this just to cover all basis but you just never know. I am sure their are many people out their in my position worry the night away. My nurse said I need to be positve and that they are doing this because they have to be 100% so that I don’t have to go through this again.Everyone else makes sense so why can’t I. She said that if I hadn’t had BC then the ultrasound would of been enough normally but the BC means they have to take it a step further.The joys of cancer. Thanks for listening to me again.
Angela xxx