Hi – I need advice and help quickly so have rewritten my post …. With high grade dcis in large area including nipple - had mastectomy and immediate recon and reduction other side.(31st May) Had snb –prior to surgery- came back clear so op went ahead. Was then told that path lab had found a small but very aggressive tumour - grade 3 in the removed boob –totally removed the we b****r Anyway saw oncologist on Fri - and he quoted lowish statistics - treatment could be chemo -fec - followed by anti-oestregen drugs eg Tamoxifen or preferably Arimidex (sp?) or just the latter drug regime - have been told to go away and think about it - the choice is entirely down to me - - can’t get my head round needing chemo as lymph nodes were proven clear and tumour is totally gone - any ideas? When my son was little and he had a dilemma he would say “What would you do if you were me?” -exactly what I am asking you lovely people . PS am 59
I just need opinions – OH and younger daughter think I should go for all the treatment – son thinks go for minimum and other daughter say do what you think is best – as do friends……please advise – I’m going mad!!
Love to all you brave souls x
hi chebsy13
well I had my tumour cut out (with quarter of breast) and also had clear nodes and am having 8 x chemo but can’t have hormone treatment as triple neg
whilst chemo isn’t pleasant we all react differently and you might not find it too bad … problem is you won’t know until you start …
i would have it … there are some times when it seems prudent to err on the side of caution …if you get my drift
good luck anyway
lots of love FB xx
Hi there Chebsy
Sorry you have had to join us but welcome anyway.
At the end of the day, the decision is yours but personally I would take all treatment offered and then at least you’ll know you have thrown everything you can at this dreadful disease. You may already be free of it but if there are any rogue cancer cells lurking anywhere else the chemo will see them off!! Perhaps it would help if you could arrange a further meeting with your onc & bcn?
I’ve had 2 ops and only 1 node was involved but because my tumour was also grade 3 & her2 pos my onc says they would have advised chemo even if all nodes had been clear. I have taken his advice and had my 2nd chemo yesterday. I have a very long road ahead but each treatment is 1 step further to getting my life back! I am determined to beat this thing!
I wish you the very best whatever you decide to do. Please let me know how you get on?
Love Carol x
Hi Chebsy like you I was dx with a small aggresive tumour, grade 3. I was told that all the cancer was removed but there was one lymph node affected. I wasn’t given a choice of treatment but was advised following mastectomy to have chemo - fec, radiotherapy and then Tamoxifen changing to Arimidex over five years.
Of course I didn’t want chemo and was horrified at the thought but I have recently finished. It is do-able.
Someone wrote on a thread when I was first starting “the only thing worse than having chemo is needing it and not being able to have it”. This hit home and on my worst days I carried the thought in my head and it helped me. I had been given the chance to fight back and hopefully rid myself of it.
My thoughts on your dilemma would be this: if I don’t have chemo will I wake up one day and wish that I had.
I wish you well and hope that you will let us know of your decision.
Margaret
hi margaret - that was me!!! - glad it helped !!! lots of love FB xx
Hi Chebsy, this is such a difficult one, isn’t it? I had a similar quandary - I had a lobular tumour at the age of fifty and after my WLE I was asked to choose whether or not I wanted chemo as well as rads and tamoxifen. The doctors sort of implied that they were recommending the chemo but that if I chose not to have it that would be all right too. It would have been so much easier if they had told me what to do, rather than leaving the responsibility for deciding to me! What if I got it wrong?
In the end I chose to have chemo as I wanted to feel that I had done everything possible to get rid of the cancer. My OH wasn’t so keen on me having it, once he had heard the list of possible side-effects, but he supported my decision. I had a really bad time on chemo - I had pneumonia and a pulmonary embolism (clot on the lung) which could have killed me. The embolism did mean though that they put me on Arimidex rather than Tamoxifen as it is less likely to cause clots and I was quite pleased about this as I believe it has better outcomes.
Now it is all over I still wonder if I made the right decision. On the whole I think I did as, like many others on this site, I still get very anxious about every ache and pain and I think this would be even worse if I hadn’t had the chemo. I still worry a bit about having had the pulmonary embolism though, as once you have had one you are more likely to have another - I had to have another op last year and they stated that I was at high risk of a pulmonary embolism, which scared me dreadfully. But I did survive the chemo (and the op)!
In the end only you can make the decision once you have weighed up all the pros and cons. Not an easy thing to do, I know, having been in the same position. Whatever you decide, I wish you the best of luck.
Thinking of you
Gwyn
Hi Chesby,
I had a tumour that was initially graded as 3 from the core biopsy, then downgraded to 2 from the WLE, no node involvement, but I am HER2+ve. Given that I wasn’t oestrogen +ve I couldn’t have tamoxifen anyway, but I did have the choice between FEC 75 which the onc thought would be enough and FEC 100. I went for FEC 100 as I felt I wanted to blast all cancerous cells in existence, and I’m having herceptin afterwards.
I’ve had my second round of FEC this week, and it really isn’t pleasant, but I have to say, that for me, it’s better than the alternative. I’m 43, I have two small kids, and I want to live until I’m 100. I feel that going through chemo now gives me the best chance of that.
I wish you well, and hope that whatever decision you make is the right one for you.
Take care,
Caron
Hi Chebsy,
It is always good to make decisions based on information.Thats what I did…I tokk all infromation,pros and cons given to me by the professionals and then I made a view that,if it will help prolong my life,then it is worth it.They will offer the best possible options for each case.I have been diagnosed first in Nov2005,had right mastectomy,and right lymph clearance with 4 nodes affected.Had 6 months of chemo and 25 sessioins of chemo.As much as the tumor had been taken out, there might be cancer cells that slipped the net so to speak…hence they give us chemo.I am triple negative too,so cant be given any hormone remedies/treatments.
Unfortunately,2 years later, I was again diagnosed on my left and had lumpectomy and left lymph node clearance…well this time they took 31 and 19 were affected…we are all puzzled having had all my treatments from Nov05 to Sep2006,had some cancer cells slipped the net? of had been lurking around there since and was too tiny to find at that time? Had MRI after 2nd diagnosis and nothing showed…so now having chemo yet again…
At the end of the day, the decision is yours and what you think is best…I must say, Acceptance will help the process a little bit easier…I am only 41 when first diagnosed,now 43.
Got no children,even if we want to have one and not very likely to have one now after my treatments.Hope it helps…
Veeluz
Hi Chebsy
You may find the BCC booklet on chemotherapy helpful to read, it can be found at breastcancercare.org.uk//docs/chemotherapy_07_web_0.pdf.
Also if you would like to talk this through with someone please give our helpline a call. Here you can talk in confidence with one of our trained members of staff who can offer you a listening ear as well as support and advice. The number to call is 0808 800 6000 and the lines are open Monday - Friday, 9am - 5pm
Saturday, 9am - 2pm.
I hope this is of help to you.
Kind regards
Sam
BCC Facilitator
I was different to you in that my tumour was grade 1 and although I had no lymph node involvement I did have an intermammory node affected. My case was discussed at length by the MDT and I was eventually classed my a majority decision as node negative. The issue of chemo was discussed by them and I was advised that I was borderline for chemo - the decision was that the risks outweighed the benefits and as such they were not recommending chemo.
I was slightly un-nerved about the intermammory node issue and not getting chemo but they assured me that the 29 rads and 5 years of tamoxifen would suffice, but as it had been indicated initially that I would do chemo/rads/tamoxifen I was geared up to having 3 weapons to fight it with and they had taken one away. Had I been offered chemo I would have taken it.
I think it’s a very difficult decision for a patient to have to make and I would strongly advise that you seek guidance from the BCN or on to help you with the decision.
Good luck with your treatment whichever path you decide to take and let us know how you are getting on.
Hi,
despite being in the middle of post chemo weekend and probably at my worst I would still say go for it, and you couldn’t ask me at a trickier time right now. But then time is what we want and why we are doing this.
You can always start chemo and see how you get on, not everyone gets right to the end but those micro cells are zapped by even a few doses.
Hugs and hugs for a decision that is right for you. You only stand at this point once.
Lily x
Hi Chebsy
I talked to the onc at some length about this and this is what I found out.
Like you there was nothing in the lymph nodes indicating that it had not spread so the treatment you are being offered is adjuvant ie just in case. What they’re trying to do is kill what they call micro metastases ie any teeny clumps of cells that might have sneaked past the lymph nodes. They have no reason to believe there are any but it’s better to zap them now than let them get a hold elsewhere and turn into something that would be a problem later.
Having a grade 3 tumour means it was growing quickly I believe which is some ways good because it means you are likely to have noticed it earlier giving it less time to spread. A friend of mine who had breast cancer 10 years ago (still all clear) was told that the older you are the slower most tumours grow. this is because our whole metabolism slows as we age which means for those of us who are younger taking all treatments offered is probably a good idea as we still have pretty active metabolisms (I’m 33). I believe most ladies under 40 are told chemo is a very good idea (especially 'cause they nkow we can cope and have a long life ahead) and those over 50 aren’t always offered it if they think it would do more harm than good so it is a judgement call.
How is your health outside of the cancer? In your position I personally would build myself up as much as possible right now, eat well, start taking a little gentle excersise if you don’t already (a gentle walk every day or every other day for example) and do the chemo as 59 isn’t exactly old. I’m basing this on my Mum who’s 55 and really still very active.
If you were my mum I’d be saying do it, it’s manageable.
PS I’m on the full dose of FEC as we speak (FEC100). I’ve done 2 doses and I’ve not had most of the side effects courtesy of the wonderful drugs they have now so if you do choose to do it you may also be lucky but even if you are one of the unlucky ones who gets the nausea etc you will get through and there will be other people doing the treatment at the same time that will help you walk the path to the end of treatment, and you can then be sure that you’ve done all you can.
On the other hand your statistics may say that the hormone therapy alone would be just as good.
I did ask about maybe having the chemo later if there was a recurrence and it was explained to me that I needed less now as we would be dealing with small clusters of cells at worst whereas later the treatment would be harder if there was a recurrence. I don’t know if that helps you but it was the clincher for me.
Chemo gave me a 12% improvement in prognosis, ie increased my chances of still being here in 10 years from 64% to 76%. I felt that was worth it.
I hope this helps you.
In brief I think they wouldnt offer chemo unless it would do some good.Grade 3 suggests it was quite aggressive so I would be inclined to go for chemo[I did].It isnt pleasant but you know you’ve done all you can to get rid of the cancer.Good luck whatever you choose.Love Valxx
Hi Chebsy13,
I would like to echo what everyone has said as they have all said what I myself think,
At the end of the day only you can choose ,it empowers you - but if I were in your shoes I would definately have all the treatment you can as ammunition to fight for your body with.
Chemo certainly has its down sides and i’m sure all of us who have gone through it have had unpleasant or down times but it is worth it and there is light at the end of the long tunnel.
I have just finished mine.There were times I felt so horrible and frightened I wished that I had not started it- but now over the finishing line I am SO glad I have done it.
Hope this is a tiny bit of help to you,
Best wishes
Kay x
Hi Chebsy
I’m now 52 and have just had my second FEC of three then three TAX. I spoke to someone the other day who had been told to go away and decide, the breastcare nurse said she could always give the decision back to the oncologist, alternatively she could cut the course short if it came too much. I hope you make the right decision for yourself, I read about increase of survival rates etc but no-one has mentioned this to me at all and I’m usually in such a dizzy state I forget to ask.
Babs
Hi Chebsy -
Nice that we’re all singing fromthe same hymn sheet isn’t it!
As we have all said, ‘it’s your decision’. I do agree with everyone (and Vertangies response is particulary helpful - she’s so eloquent!) and if you were 49 the Onc would be telling you to go for it. As it is you’re 59, but your tumour is a baby and grade 3 - always risk of micro metastases…
I asked for prognosis with and without chemo - I ad 50% without and 68% with - so no choice… I too am 44 with small and teenage children… I’m having TAC and its ok. Not something you look forward too, but you can plan around it…
Let us know how you go!
Love Td xx
Hi Chebsy
I was told I did not need chemo as the risks outweighed the benefits. I had very hormone receptive BC, had WLE, node sampling, no nodes involved and a grade 2 but nearer grade 1 tumour. Prognosis was high 70-80% with a 2% benefit if I had chemo. Well after 4 and a half years it has come back as bone secondaries - so much for statistics! In hindsight - which is a luxury we can’t have - I would have taken chemo as it has travelled through my blood system rather than through lymphatic. Also I was on tamoxifen (and 2yrs Zoladex) when my 2nd dx was made, tamoxifen had stopped working or I had a rogue BC cell that has gone on to multiply. For the 4 months or so of discomfort you go through for chemo I would go for it. I’m currently having chemo to get any other of the little b*ggers out of my blood system even though it wasn’t ‘necessary’ this time round. By the way I was 41 when 1st dx so even with taking my age into consideration chemo wasn’t definite.
Make sure you ask your onc any questions that these replies bring to mind so you are completely aware of the benefits and risks, unfortunately though there are no guarantees with this disease.
Nicky x
Thanks for that -all of you -great to know there are people out there caring and sharing - especially you Nicky - you made me realise it was Hobson’s Choice - have just phoned oncology and am going for the chat with nurses-Be chatted to and shown around bit next wed - trouble is- it’s an hours drive to the hospital but small price to pay and then I will get my date to start the wee trek doon the path of who knows what! I suppose I could picture it as The Yellow Brick Road and go skipping along …hmmm have to get a Toto …will keep posting and hope you do too- take care and love to all Cx
Hi Chebsy
Have a good talk with the BCN’s and ask any questions of them and us. I found out quite alot from here that isn’t covered in the general chat you have as you don’t know what to ask until you’re going through it. You certainly won’t be the only person starting chemo when you do and one thing that’s helped me is chatting on a new thread to ladies who are going through the same thing at the same time. We support each other, give advice, answer questions, have a laugh, have a moan - it’s what this site is all about. Keep us posted and, if you think of anything before next Weds let us know and we’ll try to help.
Nicky x
hi i have replied so many ties to others with the same dilemma. i found this site gt as i had the same q to ask everyone. it all helps but at the end of day its down to you. i would just like to add my bit. sorry to others who have read it before.
i had lumpectomy in Oct and snb. that was clear but in margins they found more little spots of cancer. i was advised to have mastectomy. no q here get rid of it no use to me now… i am 50… ha ha. i was offered a imm recon as well and here was a q should i shouldn’t i. i went for it in DEC as thought cant look down at nothing. if i had two off it would have been different. had MRI on other and was OK. i am happy with shape size. taking me forever to recover though. i was told also if i didn’t have it off i needed rads but if had it off no rads etc so this was another reason to go for it and carry on with life so i thought… when came out of op i was told to see onc Fri and discuss chemo. what a blow. my consultant said all this was over treatment but i met with onc. long long discussion. i only had 2 percent chance of it reoccurring so very low. the choice was mine. HELP. she also said i was a very hard case she couldn’t help if i was 40 or younger she would tell me to have it if i was over 55 wouldn’t offer it. this was because of strain on body etc well i found out as well i could have herceptin if went for chemo… this made my mind up i wanted to try everything. if it was offered i was going to take it. even the wig that’s in bottom drawer must take back for refund. i had delays with healing so didn’t start chemo till march. i was having 6 fec 75 and cold cap… no 1 was gt i could have dance all night no2 was sickly for a week no3 sick for 3 weeks and had strongest anti sickness but i think half of it was me and panic. saw consultant she said i could stop after no 4 and then i was allowed herceptin. i said i would decide after no 4. well sick in hosp before left. then OK for two days then wow sick sick sick. saw onc again and said all was extra ins so she thought best to give up as gain so minimal compared to what i was going through. she said she wouldn’t loose any sleep over me, so i stopped. i wanted to get this over to you. so even if you try and stop you have done your best. i felt bad at first till someone said on here i was brave to stop. i don’t think about it now i know it was right to stop. i am going to start herceptin soon and again the thought of a year and visits to hospital three weekly is yuk but i will and carry on till i cant cope. after all all extra ins and in some areas i wouldn’t have even been offered chemo with such low benefits. i hope you can get your head round this lot and not nodded off.
take care in whatever you decide.
Julie.