Hi all, sfter major surgery on both breasts on 17th May, I went to see my surgeon today, who has told me that I have clear margins, no spread but the mass was significantly bigger than orginally thought and upgraded to a grade 3 cancer.
This means that I have been advised that I need chemo therapy in addition to radio therapy and hormone therapy. I still havent had the results or my protein test yet as it has been sent to a specialist cancer centre for futher tests.
I am pleased that there will be no further surgery as I am still in a lot of pain and the “t-junction” of my scars on both breats keep splitting open, however, I am terrified of chemo particularly as I live alone and am scared that I wont cope.
I have been receiving messages from friends all evening, saying “great news” and “I am so pleased” but I feel really confused and I should be happy but I am not. How did anyone else cope?
Thanks,
Jan
Dear Jan
I am sorry to hear you now have the prospect of chemotherapy to face. I am sure you will find a lot of support from other members on this forum. People often start, or join a thread corresponding to the month when they start chemotherapy treatment ( June Jewels, May Moonbeams) and there is also a thread called Top tips for getting through chemo which you may also find useful.
breastcancercare.org.uk/community/forums/top-tips-help-get-you-through-chemotherapy
You can also call our helpline to talk things over. They can offer practical information and emotional support. Opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000
Very best wishes
Janet
BCC Moderator
I’m somewhat at a loss to understand why you, or anybody for that matter, should expect you to be happy!
However, you are probably going to be fine with the chemotherapy. For most people the side effects are very well controlled these days. The first session is normally the worst. For one thing you psyche yourself up into a state of nerves (this is normal, but it is not usually nearly as bad as you fear), and the other thing is, they often don’t give the full barrage of preventative medications until after you have had one treatment and tell them what side effects you have.
The real magic anti-nausea drug is Emend, and you can try asking for it at the beginning, but it is expensive, and they might not allow it until they know you really need it. I was also put onto Omeprazole (another wonder drug) after my first treatment, as I had terrible heartburn which my usual Gaviscon didn’t touch.
In conclusion, it is normal to worry about chemo, and it is not pleasant, but as they say, it is doable! Some people manage to work through, AND look after young kids at the same time. I do take my hat off to them. But it depends so much on the individual. Everybody is different. Don’t ever beat yourself up because of how you are feeling. There is no “right” way to deal with cancer!
Take care, hope your treatments go as well as they can, and keep posting!
xxx
Jan I totally understand how you feel. The prospect of chemo is a very frightening one as its the fear of the unknown. I am due to start on 13th June and am, too, very anxious. There a lovely thread called ‘June Jewels’ full of fab supportive ladies going through exactly the same thing. Come along and join in, even if you don’t start chemo until July it’s good to share your feeling with others in the know! And you’ll get used to well meaning people saying the ‘wrong’ thing 
Take care
Emma x
Hi Jan,
My tumor was only small but was upgraded to a grade 3 aggressive one. They got it all out with a lumpectomy, but I will be having chemo as a precaution to catch any stray cells and try and prevent it coming back. Luckily my BCN pre-warned me at the start that they would prob would want me to do chemo regardless because of my age (33), so I have had a while to get my head around it - some days I have and think ‘I need to do this to make me better so lets get on with it’, and other days I want to stick my head in the sand, so whatever you are feeling is completely normal, but you can do it. I am also in the June Jewels, as Emma said please join us on that thread as you will find a lot of support.
Take Care
Faye
Jan,
I too was very apprehensive about chemo, have grade 3 & live alone. Unfortunately mine had already spread to the liver & lung, so no choice, it was life saving and reduced the secondary tumours to almost nothing.
Sounds like it’s really worth doing to mop up any stray bits of your tumour that have escaped and might be trying to startup elsewhere. My primary had grown in under 6 months and the largest liver tumour was tangerine size. They can’t detect the circulating cancer through blood tests or scans until it forms a tumour.
You’ll manage the chemo, but worth getting organised and putting your support network in place. I suggest:
- cleaning the house before each cycle (you won’t have the energy or interest afterwards, but the dirt may get you down), works well doing this while on the steroids and ‘high’
- have a couple of neighbours or friends close by with keys to the door, so if you can’t get up, someone can pop in to check on you
- stock up on easy to prepare, easy to eat, tasty food & some bland things (crackers) before each cycle, consider batch cooking in advance & freezing for the kids
- try & find someone who can take the kids to school for you for a week after chemo
I also made my chemo trips social by asking different friends to take turns taking me & sitting with me for the day, some even took time off work to do this.
Good luck & stay strong.
Dear Jan
First of all I wanted to say I feel for you being “upgraded”. Like yourself, I have been upgraded from Grade 2 to Grade 3 and that in itself is scary enough. Without having to deal with major surgery, which you have just completed and then having to take on board all of the other possible treatments. However, having been through some of this with my doctors, they would not advise you that you need chemo or radiotherapy or hormone therapy unless you absolutely do need it. In my understanding, chemo is usually given for Grade 3 as standard protocol as this is the most aggressive type and they want to be sure they mop everything up. They may want to wait to see if you test positive for HER2 (human growth factor ) before commencing your chemo as Herceptin is usually given alongside chemo and gives great results. (I unfortunately am not HER2 positive so this limits my options).
I was terrified of having chemo, which I had last year, prior to surgery to try and shrink my tumour. My sister had chemo @11 years ago for ovarian cancer (she was 27 at the time) and she was very poorly on it. When I was told I had to have chemo first, I went a bit crazy and cried, a lot, like a mad lady and insisted that they had got it wrong. and no way was I going to have it! But I did do the chemo and it was not as bad as I thought. It was, as they say, do-able.
No-one can predict how your body will respond on chemo, not even the medical team, all they can do is make you aware of the side-effects - which you may or may not get. They give you lots of anti-sickness meds and steroids to help your body cope with these. Don’t be afraid to ask for stuff from your oncologist! I found I got into a pattern, ticking it off every 3 weeks and counting them down until I was finished just before Christmas. I was relieved to be finished, but did not find it half as bad as I thought it would be, In fact, I found chemo easier on my body than the subsequent surgeries I have had (all of which I have had complications with and none of which have gone smoothly). I have not had radiotherapy but lots of ladies on this site have, and I am sure you will find some good tips on how to deal with this when you get to this point. Similarly with hormone therapy, which you wil be put on after chemo. Just try to take it one stage at a time. I have learnt not to think too far into the future - I just concentrate on getting each small hurdle out of the way. I don’t think about the next phase in the treatment until I get to it.
If you can get a support network in place of friends / family who can look in on you that would help. And the chemo threads have some really useful tips. If you are having it every three weeks, I suggest writing things down in a dairy, i.e. if you are sick, when you feel tired or pain etc which will help you work out when you wil have good periods in between the bad - I found I had a few bad days straight after the infusion, then a good week, and then a few bad days again - so I did “normal” things like shopping, going out with friends and stuff with my children on my good days. The bad days I just slept and people helped me look after my children on those days. This helped me keep some control - as it can feel like you have none when you have to go through all of this. You will get through the chemo, it isn’t pleasant, but IT IS doable.
I don’t understand how your friends can be congratulating you on your “great news” however? Perhaps they are confused - I had to explain to people that Grade 3 really is not a good thing! People don’t understand that once the surgery is finished, the treatment does not. In fact when I was diagnosed last July, my nurse told me I would have a year of treatment. I didn’t believe her, but here I am, in June, having had chemo, x 6 operations, still awaiting path results back and waiting to go onto Tamoxifen. So she was right. It will be a year of treatment plus. But whatever it takes to get well. And I thought I would never cope. But you do. And I have made some great friends on the way through this forum and meeting other ladies in a similar position to me. I am sorry you find yourself a member of the “cancer club”. But I hope you will find the strength and support to get through the treatments and do keep posting.
Good luck and stay strong. You can do it. Em x
Hi Jan
Sorry to hear this news. My tumour was grade 3 and HER2+ so I am having 6 rounds of chemo then Herceptin for the rest of the 12 months.
I do find your friends’ reactions a little puzzling, but I suppose the “good news” is that the surgery produced clear margins and no evidence of spread, which I assume means you will not need to have lymph node removal. This is of course important as well in your overall prognosis.
I was dreading chemo, much more than the surgery (and I was absolutely terrified about that!). I’m now half way through and, as others have said, it isn’t pleasant but it is “doable”. For the third week of each cycle I actually feel quite normal, which is a bonus!! I presume you’ll be having the chemo at Burnley. Both the consultant oncologists there are lovely; it seems the norm to see them every cycle so you can talk in detail about any side effects and they can do their best to give you the medications to minimise them. There is also a 24 hour helpline number if you need assistance at any time. The chemo unit is small and very friendly, with excellent nursing staff who really put your mind at ease. You can take a friend to stay with you throughout the treatment. I also get excellent support from the District Nurses, who visit once a week during chemo and would come more often if I needed it. The local hospice runs full day sessions on Tuesdays, with lots of information and therapy sessions, including one which gives information about chemo. I know the prospect of chemo is daunting, but there is plenty of support out there - not least from this excellent forum.
I don’t always stay positive, however hard I try. However, I do always try to think of chemo as the bit of the treatment that will minimise the chances of the cancer returning and really try to hold on to this thought.
Take care and keep in touch.
Wendy xxx
hi jan,
exact same diagnosis as i had, im half way through chemo, its not easy and its not that nice but its doing the job it supposed to do and it is manageable. if you have a friend that can pop in or help out occasionly you will get though it. I went back to work inbetween cycles and i work 2 and a half weeks and have about 4 days off for treatment. I dont get a lot of help to be honest my OH does things if i ask but generally i do everything as normal, just slower, or i leave it for a good day. if you are on your own, these ladies on here are always ready to talk or listen to you have a moan, answer questions etc. you can do it, no doubt about it.
angie xx
Wow! Thanks for the info ladies. I have been burying my head in the sand since I got my results. I am really pleased I posted now as I needed to know from people who really know. I will let you know when I get my oncology appointment.
You all make me stronger
Jan x
Hi Jan,
After my mx I was upgraded to grade 3 and also found that a there was a micro met on the sentinal node so had level I & II clearance. I also had a CT and Bone scan done.
Was at the hopsital on Wednesday to be told that 14 nodes were removed and all 14 were clear so that is fantastic. The Bone scan was clear as was the CT however they noted a “texture” on my liver that they have no good evidence of cancer but perhaps might need to be followed up so I now have another MRI next Friday for that…it just never ends.
I was also told that I have to speak to the oncologist to have a chat with them as they haven’t decided whether I need chemo or not. My BC nurse said that I needed to hear what benefits he felt might be as if they said it was 1% would I put myself through that trauma for that %…I wish she had not said that as now I am in a state of quandry!
One month ago I didn’t have cancer, now I have my head around having cancer my consultants/ BC nurse are talking about all this prevantative stuff to stop it coming back as they class me now as not having cancer (as far as they can tell obviously) and I am just so thrown by all of this.
Apparently chemo has never been discussed during the MDT meetings as something that I might need so perhaps it wont happen but I am now left thinking, I had a mx, I had a clearance; I chose everything that I could/can to chose life…now I might not get chemo and it makes me feel like I am weirdly “wanting” chemo and feel cheated if I don’t it’s just back to the old chestnut of “what if”…god my head just needs to stop!
2 x consultants, 1 x plastic surgeon and friends and family are all so happy with all the clears and results and myself and my partner are walking around like we have lost the winning lottery ticket; I just have no idea what to feel/think/do anymore and I hate it 
Sorry for the rant; didn’t mean to hi-jack this for that I just wanted to say that I too have been upgraded but was told that the grade and stage alone do not matter; it’s everything all together that they look at. I guess it makes sense but from one hour to the next nothing makes sense some days anymore!!!
I hope you have a get your appointment through soon, I too am waiting on mine.
Karen
x
Just seen this Karen, I hope you find some resolution for your piece of mind.
I am spending the day at the local hospice tomorrow before I see the Oncologist so I will be well supported but I am still terrified.
Jan
Hi everyone,
I saw the Oncologist on Tuesday who was amazing!
He started off by reiterating what my surgeon had said about, Chemo, hormone and radio therapy then he said that this was where he wanted to start the discussion on how to move forward.
He asked me about absolutely everything in my life, current ongoing medical conditions, tablets I took, my current wound infection which will not clear up, where my family live and then about my fears about any of the treatments,
One hour later! He said that he felt that for me Chemotherapy would do me more harm than good with all the side effects and that the chance of making me really ill was 75% but giving me chemo would improve my prognosis by 4%.
So no brainer really! He did say however, that if I was thinking of refusing hormone therapy (for 10 years) and radiotherapy he would have to take me behind the building and sort me out!!
He showed me graphs gave me so much info on FEC and picc lines etc and told me to talk to my family and friends and go back next Tuesday to give him my decision and start the hormone therapy.
I really feel that I have got my first positive break at last and I had a wonderful day at the hospice with some nice alternative therapy sessions.
Jan