Am starting chemo Aug 27 in Leicester- anyone else out there doing the same? Some one posted on here that in Leicester they only do scans if they think that the cancer has spread- so that’s cheered me up a treat as I am to have scans!
Saw onc on Thursday and didn’t take to him unfortunately. The interview was about an hour but he seemed to speak for 45mins of it leaving me with a lot of unanswered questions. There was no oncology nurse available to see me - I am to await ‘contact’ . My nice BC nurse is away on holiday.
Fed up with not very good prognosis (grade 3, 1 lymph node involved, hormone pos.- 40% chance without treatment and perhaps 60% with) Rang help line and was told maybe I need counselling as I seem rather angry . Personally think it strange that one would NOT feel angry - faced with losing one’s previous excellent heath (in my case anyway as I was picked up on routine screening with NO symptoms ) - and now facing ongoing ILL- health (already with post op infection) and then more barbaric treatment on the off chance that it may help. What a gamble! I would really rather take my chances & refuse chemo but have husband, family etc who think I should accept all treatment offered - so will do it for them- but not 'appy!..forget to mention, my younger daughter aged 37 has had 2 separate breasts tumours in the last 6 years…
you have every right to be angry, im furious that BC has got me, i dont know where you live exactly but is there any chance you could contact coventry hospital, everyone on this website says they are brilliant and if nothing else im sure they would give you some clear advice regaurds the chemo,
I didnt want mine and hated every minute of it, but now im through the otherside i feel so much better just knowing ive given myself the best chance, there are alot of people on here that have chemo when the stats say there is only a 3% improvement in prognosis.
Anna x x
I am not surprised to read that you are angry topsymo. Who wants their whole life changed for the worse a whatever age! It is a time of such changing emotions and if it is overwhelming I would say grab any help on offer. Re the scan issue - you may have misunderstood some of the things you have read on the forums. I think generally at initial diagnosis (and I stand to be corrected on this) it is normal to do scans for what they call ‘staging’. It is a future reference point. The idea of ‘no scanning’ comes later with some hospitals. Once treatment has finished (surgery, chemo, rads, etc.) many places do not scan again unless the patient presents with a problem. You may be unfortunate with it being the peak of the holiday season and many hospitals seem not to have sufficient cover for the care they normally give - do pursue contact with the oncology nurse and your bcn so that you don’t just get ‘forgotten’. Keep coming back here and asking any questions as well and let us all support you too in this time.
dawnhc
xxx
Sorry to differ Dawn but I was never offered scans till 1 year after all treatment had finished.As you know I declined them then though would have accepted them at time of dx.Vxx
Hi topsymo,
I guess we are all Ms Angrys (sorry my Grandson has me reading the Mr and Miss books most days) so that is good because you can put up a big fight. I was surprised at the stats you quoted as they seem low for what you have mentioned and also I have been told that age is the biggy. Not meaning to be rude but there are people on here in their 20s so I am guessing by the age of your daughter you are a little bit over that!!! On the plus point you can have tamoxifen or similar for 5 years as you are hormone receptive. My USA Susan Love breast book says tamoxifen reduces the annual chance of a recurrence by 40 -50 % . It actually saves more people with positive nodes than those with none. It is the same with chemo, the higher your risk the greater significance it has. No-one can predict how we will fare long term, so try not to dwell on the numbers too much, it only matters that you are the right side of the line. I try to take in a list of questions so I can just throw that into the conversation. The trouble is, early on you are still in the shock/angry/tearful stage and that makes it hard to be assertive if the onc is not a people person. Hang in there and hopefully the BCN will come up trumps. I can recommend going on a trial that got me my own nurse and a 24/7 number to call whenever I want.
Thinking of you and a big hug
Lily x
This may or may not help. sorry if it doesn’t but I can tell no lies.
I also feel that chemo is barbaric. I like to think, well I hope that in a decade’s time we will have good targetted therapies that don’t have th side effects of chemo, rads, hormones etc. That surgery won’t be necessary etc. Because it is barbaric… but its all we got so right now we do it.
I say this as someone who is having a really cr@p day because I’ve just done cycle 4 of FEC, I’m finding I’m forgetting things and are worried that I won’t recover all my mental faculties. I can just about cope with not feeling like a me and feeling ugly, bloated and as for sexy HA. Pretty sure that I am now at the low point, the lowest I’ve been anyway. And yet I know I will return a week on monday, take my chemo like a good little girl because it’s worth a fair bit to me. My prognosis was a little better than yours but by no means the 80 or 90% that so many people get but it really doesn’t make any difference because they’re just numbers not really a prediction and they’re always out of date, consider them as what they really are, a guide to help you and the oncologist choose a treatment plan, nowt more.
So if I were you I’d do the chemo, it’s barbaric and horrible but they don’t spend all that money and make you suffer for no good reason…
As for ongoing ill health, if you mean from the treatment well then yes it does feel rather a lot like that but not as bad as I thought. And it does end. As for anger, I reckon you’re right, to go through this and not be angry would be surprising to say the least.
Hope this hasn’t depressed you, but I do sometimes feel that we’re supposed to have some kind of faith in chemo and delude ourselves about what they’re shoving into us, it’s toxic stuff, but more to the cancer than the rest of the body fortunately. Oh you do generally have a good week out of each 3 when you feel and look more normal which does help or I don’t think any of us would turn up for the next dose at all LOL.
For the record I’ve read that chemo brain does pass eventually so don’t worry about that one too much. I’m just fed up with it for now.
Hi Topsymo
Cant answer your question about scans as I dont know enough. I never had one offered but had DCIS. It seems to vary and I think Dawn is right in saying that scanning is to help them make a correct staging of your cancer. I wouldnt read too much into the fact that you are having a scan - it does seem common enough. As for your anger, I think anger is normal and can be a positive thing too, if controlled. You need that fire in your belly to ensure that you get the answers you need, the right treatment etc. Being complacent and subserviant isnt always a good thing as you can get overlooked, but I guess there is a happy medium. Your anger is probably down to a lot of shock and also the unfairness in life. Dont let anger get in the way of making important decisions such as whether to accept treatment or not. As Angie says, its not ideal by a long long way, infact it is downright barbaric, but it is all we have at the moment.
I hope you get to speak to someone on your wavelength. It will make a huge difference in your outlook.
Best of luck
Cathy
Hi Topsymo
Angry? Yes me too. 56 years old, kids all happily married and settled, beautiful grandchildren, fit as a fiddle (not been to GP for nearly 10 years), planning our early retirement in 2010 for ‘us’ time after working full-time and paying into a pension fund for nearly 30 years and then in May…
Felt robbed, with my life on hold.
Like you, grade 3, 3 nodes involved and hormone +. Now, I’ve 2 chemos under my belt, another 6 to come, radiotherapy and 5 years of hormone therapy. Basically just getting on with it because I want some of that ‘us’ time, and I am looking forward to next year, planning holidays etc. I want to know that I’ve done everything possible to give my husband and I a retirement.
Am I still angry? You bet.
Take care and good luck.
Mal x
If you are angry enough with those cancer cells, then go for the chemo and hope to heck it bashes hell out of them!
I don’t know (never asked) about stats for my own cancer, but I had right mast and one node involved, Grade 2 (I think). I had more than one tumour and had 4xFEC and 4xTaxotere followed by radio and now Arimidex and Herceptin as I was both ER/ PR positive and Her-2 positive.
My chemo finished in November, it wasn’t easy, but you will get through it, and come out the other side knowing that you have done your absolute best to prevent a recurrence.
Someone on here once posted that her oncologist had told her “give us a year of your life and we will do our best to give you 20 back”.
I think that’s something to hold on to.
xxx
I think scans are offered if you haved lymph node involvement. Those stats don’t sound right. I was told 15% with no treatment and 60 something with chemo and hormones. I had 6/14 positive nodes with Grade 3 and various other poor factors. Do you have your pathology report? You need to contact a BCN as soon as you can and ask her all the questions you want answering. Write down all the questions you want to ask and ring the hospital and ask how you can get the answers you need
How can you not feel angry when your meeting with your onc was so unsatisfactory?
Thank you all so much for your comments. I know I am just one among the VERY many of we suffering BC women- and as I don’t want to drown in self- pity,anger seems a more positive response!
Interested in the varying views re stats and prognosis. Because I am ‘that sort’ I worked out my own chances using the info my surgeon had given me plus the path report & then used the NPI and other info I found on the web. I then hoped the Onc would say I’d got it all wrong but unfortunately he confirmed that I was about right - and then added a few more jolly stats of his own! It is all such a lottery isn’t it- having a daughter- living- with- cancer and having had 3 close friends and 2 acquaintances fail to make it to their pensions I think I’m realistic rather than pessimistic- maybe that’s one of the reasons I never buy lottery tickets - I distrust gambling!
I know that most of you out there are younger than me ( 65) but my family history had led me to expect 25-30 more years of life so it’s still a big adjustment for a VERY healthy person to have to make!
I hope I shall get to like my onc and trust things will be better after I have met the chemo nurse this week. Another week, another dollar- and look- it’s raining again!
Hi Topsymo,
I reckon your sense of humour will get you through this. It must be so worrying thinking about your daughter too. The stats only tell you the likelyhood but you don’t know which side of that line you will be on, so keep believing.
Wishing you lots of luck and keep battling, no-one has said you won’t carry on to 90 still
Lily x
I think most of us have been through a whirlwind of emotions, I am half way through chemo and it has been a rollercoaster of emotions, one minute I feel great the next I am at rock bottom, I have cried an ocean of tears and wonder where the strong person I used to be has gone. I was given a book which is called “I am not my breast cancer” it is about peoples experiences of breast cancer and has made me feel “normal” as I relate to some of the things written.
Topsymo, someone said to me “life is worth fighting for” and I felt really angry at the statment which I know is true but at the time I had been told I had to go through 12 doses of chemo, 1 year of herceptin and 5 years of tamoxofen and the road ahead seemed long. I now take each day as it comes instead of looking ahead and it works for me. I wish you well with your treatment.
Liz x
Hi Topsymo
Dont know if we can help each other. I live in Leicester and am starting Chemo on Friday 29th August. Diagnosed at Glenfield on 9th July. Had WLE and SNB on 15th July. 2/5 nodes affected. 2.2 tumour Grade 2 ( so not as aggressive as yours,I think) Saw ONC yesterday for 1st time at LRI (dont want to say names, but has yours got lots of white hair, if so you know who I mean). It took me a while to get head round doing treatment but Im ready for it. But I asked for scans to check me out and told no. Said if under 5mm cant be detected and Chemo will zap. Over 5mm,I asked? Think positive was the reply. Would he say that if it was his body. I had cervical cancer in 1998 (caused by misreading of smears and had to have radical hysterectomy). I dont think Im being pessimistic its being realistic. If I have got a shortened life span dont want to spend it being ill from treatment and if Ive not great. I know there are no guarantees but just for now would be good.
Jackie
hi topsymo i also live in leicester and going to start chemo at LRI i saw onc at glenfield must say i am very scarced about it all going to see onc nurse on the 18th sept day before my chemo starts i have to have six session of chemo and then 25 rads
karen michelle
Hi Topsymo
Glad you replied. I got picked up symptomless on my first mammogram! Sorry to hear your wound has not healed yet. Mine’s doing well but much more painful than the boob job!!!
I dont belong to a support group but I talk to a lot of women on here and a group of us that met on here also belong to a group called the Lymphomaniacs on Facebook. When I was first diagnosed in July I knew nothing about Breast Cancer but I have learnt so much from this website. You can put up any thread and suddenly everyone talks to you. If you want to know anything put a question on here and I bet you will get loads of replies or ask me anything and if I know I’ll tell you if I can. But you can ask your BCN as much as you like. Apart from this site breastcancer.org is good and cancer research website.
Im starting Chemo on Friday with a “Showround” on Thursday, yahooooo!!! I find the more I know the better I feel because I can sort of check that everything is done right by checking on here if you know what I mean. At the moment I am looking at possible side effects for my Chemo drugs and seeing what I might need to combat them.
Jackiexx
hi jackie how are you i remember you saying that you needed to go to clinic on friday hope every thing is ok
Jackie - check out “Top Tips for Chemo” thread - it tells you virtually everything you need to know about what you need to combat side effects of chemo - best of luck to you with your treatment
Sue xx
Hi Westside Sue
Thanks!
Been on there and got loads of info. I can feel a big shopping trip coming on!!! I love shopping and not been for ages. Said to daughter tonight I feel like Im doing my holiday list but for Chemo stuff instead,lol!!
Whats your situation if you dont mind me asking?
Jackie