This is my first time on the forum and not sure if I am posting in the right place, on 23rd April diagnosed Her2 Positive after my tiny tumour was removed, lymph nodes were clear, have an appointment with Oncologist 15th May. My surgeon has suggested Chemotherapy, Herceptin, Radiotherapy and Hormone Therapy. I am so shocked this has all come out of the blue from a routine mammogram and I have always been very healthy, I am 58 have a very supportive husband, family and friends but so so frightened, how soon will I be starting treatment ? Can I put treatment off for a few months ? I know these are the questions I need to ask the the Oncologist but any feed back would be appreciated I feel like I am in limbo and of course not sleeping, Carol
Hi Cassa
Welcome to the BCC forums where you will soon have support and shared experiences to help you through this difficult time
In addition, our helpliners are on hand with further practical and emotional support on 0808 800 6000 and lines are open weekdays 9-5 and Saturday 10-2 so please feel free to call to talk things through
Here’s a link to more support and Information around being diagnosed and starting treatments which may help, including BCC’s ‘Someone like me’ service where you can speak to someone via telephone or email who has been in a similar situation to you to gain support and understand of what you are going through:
breastcancercare.org.uk/treatment
Take care
Lucy BCC
Morning Carol, and welcome to our very special club! You have just the same story as me. I was 59 when a routine mammogram picked up a tiny tumour, and I too had total clearance on surgery, with no affected nodes, and the histology showed Her2+. Like you, I was fit and well, on no treatment for any condition, so like you, it came as a bit of a shock. But from the very beginning I felt enormous grateful. Here was a tiny cancer, but it had the potential to be quite aggressive if left to its own devices. It had been completely removed, and with the chemo, radiotherapy, Herceptin and hormones the chances of it ever getting its act back together were rather dented!
I can’t comment on the timings of your treatments. I started mine about 6 weeks after surgery, but that’s a matter for you and your oncologist. But the thought of all those things is worse than the actual. Like you I have an enormously supportive family and friends. We read all we could from this site about preparing for chemo (There’s a sticky thread called top tips for chemo) and just took it one day at a time. We treated the whole thing like a work project (but no spreadsheets!) and we got through.
I’m a year from starting chemo now, and while nobody would claim it was fun, it was entirely doable, and any side effects are very effectively dealt with by the chemo team. Radiotherapy was tiring, having to go to the hospital every weekday for 3 weeks, but again, doable. Herceptin is much easier now as they don’t need to put the stuff into a drip; it goes into your thigh like an insulin injection. And the hormone tablets are boring as they remind you each morning that you’re a ‘patient’. Yes, they have some side effects, as does Herceptin, but I tell myself that there is a very good reason I’m taking them all, and they all have proven effects against my former squatter.
If you want to PM me I’m happy to tell you more, but I hope these thoughts have helped.
Gentle post-surgery hugs
Jane x
Hi Cassa
I am sorry to hear of your diagnosis.
Oncologists usually like to start chemo approx 5 weeks post surgery. I have heard that chemo usually starts within 3 months post surgery… obviously the sooner the better
It is strange but once you start chemo treatment you are on the road to completing your journey and towards your cure. We all dread the chemo but our minds torture us …not the chemo. It is not painful…and the worse side effect for me was the losing my hair…but I had 2 wigs which looked exactly like my hair ready for when I lost my hair (about 5 weeks after first chemo)
Side effects are well controlled…just remember make the docs aware as soon as you have a symptom…i.e heartburn…get the meds and the problem is solved immediately…the same with anything else.
Remember this is your journey and you will not have the same journey as anyone else.
If I can say anything …it is don’t be afraid…it is not as bad as you imagine xxx All the best Donna
Cassa I fully understand your sense of shock at your diagnosis. I am a bit older than you and found a lump myself but still went to the hospital in the belief that it would all turn out to be a false alarm. It wasn’t and I also had a cancerous lymph node. When I emerged from the clinic, I felt as though someone had punched me in the stomach! Like you, I ad lads of sleepless nights but once the shock subsided, I knew that I would do whatever it took to get rid of the b-----. I had the op to remove the tumour and lymph nodes and was advised to have chemo (2 different courses) and radiotherapy. I am not going to pretend that I was not apprehensive about chemo but I knew that it could get rid of bad cells not detected through scans or other means. My take was and is - the sooner they are zapped the better. Please do not let your fear of side-effects of chemo put you off. Everyone reacts differently. I have felt but not been sick and the main impact has been fatigue, loss of appetite and some dizziness. However, this subsides after the first week of treatment when you are on a 3- weekly cycle. Yes, the hair goes but, between the wig and a range of scarves, I have fun giving myself a new look every day. By the way, having been told initially that I was HER2 negative, I was told that I was positive. So I will have Herceptin given to me alongside my next stage of chemo and will have tablets for 1 year but my oncologist says that it does not have side-effects. Believe me,Cassa, I am not specially brave but, hopefully, like me you will find that, once you start the treatment regime, the fear will subside because you will be too busy coping with the reality. And, if you are lucky enough to have a close and supportive family, seeing children, grandchildren and good friends can be a wonderful tonic. So I hope you may feel encouraged to go ahead with treatment sooner rather than later but it is your decision. Good luck.
Hi Carol, sounds like you are on the same road as I.
I am 44,married with two kids.
Limbo is a great expression.
Take one day, appointment at a time.
My small lump was removed in March.
Recommended the same treatment.
I start my first course of chemotherapy tomorrow, no today, 30th April.
I have been awake most of the night feeling anxious.
This site is really useful, you can just put up your thoughts and feelings. There is always someone who will reply to your questions.
You could always pop along to a centre like maggies, where you can also get helpful information or just to relax.
I wish you the best in your treatment.
Xxx
Hi Cassa, sorry to welcome you here, but hopefully you will get plenty of support. I am her2+ too, had mx in august, nodes clear, then 6 x FEC type chemo, no radiotherapy, and am now on herceptin. There are so many different diagnoses and the onc or your breast care nurse will hopefully explain them for you. I just wanted to get it over with, and I didnt want to delay the treatment at all. Not that there was any delay, it all happened pretty quickly from when I found a lump in June. I am 56. I too was fit and healthy, and am starting to get back there again, slowly but surely. No side effects from herceptin, so far so good. Chemo was unpleasant but do-able. It is a slog, but it is lovely to hear that you have good support too, that really helps. Hope you have healed up ok post op. There is a good facebook page, Breast Cancer Buddies if you want to chat on there, or there might be a group formed on here for the same month as you going through chemo. I find the forums very helpful but must admit I have been sticking to the facebook ones recently! xx
Hi cassa,
I echo what the other ladies have said - positive feedback on all the treatment but just to give you a bit of a timescale -
I was DX with grade 3 invasive ductal ,her2 & er positive (so exactly the same treatment plan as you)
Had lumpectomy 2 wks later
Had further surgery 3 wks later (as didn’t get enough ‘margin’) 1 out of 8 lymph nodes where positive.
Started chemo 5 wks later (but was delayed a little as had a build up of fluid ‘serenoma’ that needed to be drained every week & looked into fertility options as I’m 28)
So now I’m on 2nd of 6 fec-t chemo & like another lady said - the first wk is the worst but then you get two nice wks before the next one so the good outweighs the bad:)
I’ll be starting herceptin for a year on my 4th cycle. I think the side effects are not much more than the chemo but they monitor you’re heart more.
I will then have radio for 3 wks so assuming that will be in August as all being well I finish my last chemo end of July!:). So hopefully back to work in sep!
Oh & tamoxifen (hormone tablets) for 5 - 10years!
Hope this helps & hope it all goes well for you,good luck xxx
(DX end of Jan)
That’s OK cassa,yep I will try & keep you posted as much as poss. I am normally on the April 14 monthly chemo thread but this one is a good thread you have started as we will all be going through the same treatment plan pretty much so nice for all of us to follow & get support:). Catch up soon xxx
Warm welcome petal88,I’m so so sorry to hear your story,must be so tough for you. I’m glad this website is supporting you - its a god send isn’t it! Well as far as I know with having her2 + at least it can be targeted with the herceptin which locks onto the her2 protein & stops it from growing & reduces risk of cancer coming back. I read that it wasn’t available 5 yes ago so we’re lucky! I hope Fri goes well,will be thinking of you,take care xxx
My first time posting… but wanted to share my experience and hopefully help some that are going through this at this time.
I was diagnosed triple negative, between stages 2 and 3 with my lymph nodes significantly enlarged 8 years ago. I read about a small study that was done with flaxseed, where one group had flaxseed muffins daily and the other test group had none. What was found was the ones having the flaxseed, the tumors reduced in size, while the other group’s tumors didn’t.
My Oncologist recommended to treat me with Taxol, at the same time I took 16 -1200mg. of flaxseed oil caps 4 -4 times a day throughout my chemo treatments and stopped just shortly before my surgery. My surgeon was utterly amazed that the tumor had shrunk to 2 millimeters and after all my lymph nodes were removed on my right side they all tested clear! I didn’t have to go through any radiation nor any other medications. I still take 4 caps of flaxseed daily as a preventive. I’m still keeping my fingers X’d that it doesn’t reoccur. I wish you all the best.
Day five.
Feeling quite washed out today.
Indigestion is rife, here comes the rennie. I have started to give my own injections in my to stomach to help my white cells. That was quite a challenge to do, watching yourself stab yourself. I have burst of energy. Take one step at a time.
Your body tells you you can not do any more.
Hi ladies, I also have just stumbled on this thread, I have been posting on April chemo thread too.
I am HER2 + , I am having chemo first -3 fec and 3 tax, I am due my 3rd session next Thursday.
I found my lump in February, had biopsies, ct scan and sentinel node biopsy in early march, at the moment all I can see are weeks of endless treatment, surgery, herceptin and radiotherapy it’s all very daunting!!
I am 51 , with a lovely husband and 2 sons aged 25 and 23 and a beautiful daughter in law and last year all I had to worry about was choosing a nice outfit for my sons wedding! And all this was just around the corner, when I look at the wedding photos of such a lovely day I can’t help wondering if the cancer was there then.
Good luck with your operation petal, and to everyone else on this thread!
Hi Rosie, yes I read your posts too over on April chemo thread…glad we have both found this thread too!!
At least you have a lovely event to aim for in august , but it is very daunting isn’t it with all we have to go through! And yes it must be hard to think of what state you will be in- but chemo will be finished by then and you will hopefuly feel well, your family I am sure will be so happy to have you there, but yes I stressed over little things for my sons wedding without all the added worry over what we are facing this year that you have, but what a lovely day to look forward to for you all!! Wendy x
PPP
Hi petal 88 , you must be relieved op is over, one day at a time! Hope everything goes well with recovery!
Hi Ladies a big thank you to you all, I feel like I have come on in leaps and bounds since my first posting on the 29th April when I was asking about delaying treatment. I met my oncologist today (it seemed a long time coming) she was lovely and went through everything but it was only because of all your posts and information that I was prepared. Like most of you I am having 3 x Fec and 3 x Tax with Herceptin on the 1st Tax which seems to be the norm for Her2 positive. My first one starting next Wednesday 21st May, wow after what seemed like such a long wait everything is now moving quickly, just hope I am still feeling this strong next week (doubt it). I am still frightened about side effects, hair loss etc. but as you all seem to say I am just going to try and take one day at a time. Thanks again. Cassa x
Hi cassa, so happy you are feeling more positive. I felt very like you before chemo- it’s manageable and mist of the time you will feel “normal!! It’s amazing how you can get used to things that frighten you to start either the chemo or hair loss. I was so upset when my hair came out on day 17 after 1st fec, but I had already bought my wig which is a good match to my own hair and after getting over the fear of it blowing off which of course it never did I don’t notice I am wearing it now! Also couldn’t bear looking or anyone else looking at my bald head, but after a couple of weeks even that has passed and become " normal” ! If you are not already I would recommend joining the monthly thread for chemo as everyone else is going thro it at same time: the tips, support and comfort you get from other ladies is fantastic , good luck, hope it goes well for you, I was told a very wise quote at beginning of mine. " there IS life after chemo- but no life without it " !! Xx
Cassa, good luck!! It’s not as bad as you fear!! Xx
Hi cassa,I’m so glad the ball is rolling for you! All that waiting before you see oncologist is the worst bit. At least you know what is a head of you now & you can work through each bit at a time. I am at the same stage as love wine - half way!:). So will be starting tax & herceptin on next round (5th June). Couldn’t agree with love wine more in that its good to join the monthly chemo groups. Good luck for next wed,will be thinking of you xxx