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Post surgery...chemo or not - how did you decide?

28 REPLIES 28
Lulu34
Member

Re: Post surgery...chemo or not - how did you decide?

CC on adjuvant the consultants dont look at recurrence they look at survival.

some people will have relapse of disease in some way but may still survive for many years afterwards or die from something else entirely.

zoladex plus AI is a standard treatment for secondary breast cancer in premenopausal women and like many treatments for primary breast cancer they were pretty much all only available to patients with secondaries to start with... if your in your 40s you could and dont want any more kids you could ask about having your ovaries removed and going on an AI which is the traditional route for having AIs.... you could always try the zoladex and see how you feel and could maybe opt for an oophorectomy further down the line.

obviously zoladex will have side effects as do AIs and so does oophorectomy so its not an easy decision.

Lulu x

CheshireCheese
Member

Re: Post surgery...chemo or not - how did you decide?

Hi paf

I'm confused - you said your onc quoted a 2.5% benefit for chemo, but your son said 8%.

Re the Zoladex, I've been on it plus Tamoxifen for a year now. At first I got a few mild daytime hot flushes and stronger night time sweats, although nothing compared with what some women suffer, and this has gradually reduced to mild night sweats occasionally and next to nothing during the day. From what I've read on here the ones who suffer the worst are the ones who were nowhere near their natural menopause so went off a cliff edge overnight. I'm assuming you're at least mid-forties or older if your son is 25 or so? So the SEs shouldn't be so bad (I was 50 when I started Zoladex & Tamoxifen).

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hiya! Thanks everyone for such help.
I have to make my mind up by tomorrow for chemo or not. I had so nearly come to the zoladex + tamoxifen solution which seems a good option since my stats came up as 2.5 % and cells were strongly positive.
Yesterday I was talking to my son who is 4th year Medic and he looked at recurrence stats on Adj online which come up at 8% for chemo- this seems a big option to ignore, but don't know much about recurrence except fear that it might be hard to know if its happened at a distance.
How did the Zoladex affect those who went that way? Poodle is four years on I know so iI guess out the other side.
Good luck all,
Cathy x

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hi Girls,
I was very very borderline whether to have chemo or not, I had a grade 2 stage 2 no node involvment receptor positive, however I decided to throw everything at it as I figured if I was unlucky to get it in the first place at 32 years of age then i would not gamble on it coming back. I definately have no regrets with the chemo, yes it was shite but I'm feeling better now and hooefully have a little insurance that I have wiped the ******* out!!!
Rach
xx

CheshireCheese
Member

Re: Post surgery...chemo or not - how did you decide?

Hi paf

My path report also said signs of lymphovascular invasion but the 2nd onc I saw said she didn't place that much significance on that because once a tumour gets to a certain size then it will have developed its own blood supply. In other words she didn't see it as an important prognostic indicator in its own right. In fact she was more interested in my Ki-67 results, which I've since looked up and found out is an indicator for cell proliferation, i.e. how fast the cells are dividing and grownin. Low Ki-67 = good!

You should be able to get a copy of your path report, some consultants hand it over automatically, some wait to be asked and a few are downright awkward about it. I got mine without too much trouble and looked everything up to make sure I understood it and could ask sensible questions. I often irritate the medical people, but tough!

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Thankyou cheshirecheese that is a very helpful post and I will phone up my BC nurse to ask about zoladex. I too feel that chemotherapy would be overtreating, but it kinda feels like a safety net so hard to say no to. I am slightly concerned that my path report said 'some lympho-vascular invasion, and that compared with some the details of the tumour have been simply given as grade2 whereas some on this forum seem to have more detail about actual cancer cells and their proliferation. Will try and ask for copy of actual report if we are allowed but feel like it's a brave decision to say no , as well as to say yes , to chemotherapy. I think I am brave enough to face chemical,although it's very scary to put your body through cytotoxic drugs if it's not hugely recommended. Such tough decisions but so glad of everyone's help. THANKYOU xx

CheshireCheese
Member

Re: Post surgery...chemo or not - how did you decide?

The 2.5% may be because your tumour, at 18mm, is smaller than the others who've posted on this thread. I found that my 1st onc had plugged my data into AdjuvantOnline (the predictive computer programme they use) as a 30mm tumour, whereas the 2nd onc classed it as 20mm plus surrounding DCIS. This difference in size made a big difference to the statistics.

I felt that chemo would be over-treating me. But others (probably the majority?) on here would always take any treatment offered to be on the safe side. Is it worth asking your onc if Zoladex plus Tamoxifen would be an option? Since your ovaries are still producing oestrogen, the Z + T would be a belt and braces approach, since the Z stops the production of oestrogen and the T stops oestrogen binding to the receptive cancer cells.

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hiya all! Such a relief to find a discussion relevant to my position. I am in that difficult position of being offered an option on chemo. I feel lucky that I had a grade 2 18mm tumour with widespread DCIS and a rapid mastectomy which yielded no lymph invasion, but tumour HER2 negative and Oestrogen+ and a small amount of vascular invasion. I am to have Tamoxifen as, at 47, I am still pre-menopausal /peri-menopausal at present, but have the option on chemo which she said would give a 2.5% benefit?1 this seems lower than some of the other similar stats you have been given.
I don't have a clue what to do! I have read a few of your posts and wish the oncologists could be more directive as its an impossible decision.
HELP!!
Cathy x

CheshireCheese
Member

Re: Post surgery...chemo or not - how did you decide?

Hi All

I'm another one who was presented with the choice of chemo or not. I had a 20mm IDC plus DCIS, ER+ grade 2 tumour and I was 50 at Dx (age seems to be an important factor). The onc said there was a theoretical 3.5% survival benefit of having the chemo, and said I was in the grey area where it wasn't clear cut whether I should have it or not, so it was up to me. Thanks a bunch!

I decided not to have chemo, and only then did he offer Zoladex plus Tamoxifen as an alternative. I've since learnt that this is the NICE guidelines approach - don't tell them they could have Zoladex plus Tamoxifen until they've already said no to chemo - which seems a pretty sh***y way to treat people. Apparently it doesn't give the same survival rate as the latest chemo treatments, but is similar to the earlier ones, so not very different.

I wasn't fully confident in the way the onc had explained things, so I asked for a 2nd opinion. The 2nd onc said she wouldn't have even mentioned chemo, she thought my tumour was more like a large grade 1, and she wouldn't have bothered with the Zoladex either, just go with the Tamoxifen. So I felt happy that I had rejected the chemo, but went with the Zoladex plus Tamoxifen to be on the safe side.

So far I have no regrets with this approach. The side effects have been manageable, although irritating at times, loss of sleep due to night sweats being the main problem, but that has reduced with time.

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Yes you are right Slendabenda - everyone is different both in terms of their cancer, +/-, grade, node involvement etc - and in terms of how much of an insurance/extra protection they feel they need. It sounds as if oncologists vary quite a lot too!

Feeling pretty anxious about my meeting tomorrow - these are big decisions after all- but also keen to just get on with the next bit -planning the treatment -so I can start to feel a bit less in limbo land. As others have said I don't have to rush into anything...

Will let you know how it goes tomorrow everyone and thanks again for your words of wisdom - this forum is a lifeline!

Slendablenda
Member

Re: Post surgery...chemo or not - how did you decide?

Hello
I was in a similar position, lumpectomy, clear margins, no node involvement. After surgery Consultant said I was borderline for chemo but to discuss with Onc.
Which I did. OH was trying to encourage me not to choose chemo. His main concern seemed to be that I would lose my hair!
Onc recommended chemo (6 x FEC every 3 weeks) followed by radio because Hormone/herceptin wouldn't do anything for my triple negative status.
He showed me the stats and I agreed to go ahead.
I remember saying to him "you are the experts. To me there's no point coming here and just pick and mixing the parts of treatment you offer"
Then, the day before my first chemo treatment the BCN phoned and asked if I could come in and see the Onc as he was recommending a change to the type of chemo - PANIC!!!
He suggested 4 x AC follwed by 4 Paclitaxol every 2 weeks.
I asked about the difference in stats. He said he didn't have that and it was stronger chemo but because I was young and fit I should be able to take it ! (57 - not fit).
I said "Do I have a choice?" He said "Yes- no not really. It will give you the best chance of non-recurrence and I'm basing it on my knowledge and experience and have discussed your case with a colleague."
So I went for it.
I have now had 6/8 chemo. The TAX is harder than the AC, but only 2 more chemo sessions to go.
It is completely personal to decide what you think is best for you.
As we can see from this thread - everyone is different.

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hey Pat, good luck. I feel exactly the same start my chemo on thursday and I feel really scared, but I keep reading previous posts for a bit of reassurance and it all seems doable, not easy but doable all the same!!! best wishes, Simone xxx

Patlufc
Member

Re: Post surgery...chemo or not - how did you decide?

I've made my decision to have the chemo now I'm getting scared :-(.

Guest user
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Re: Post surgery...chemo or not - how did you decide?

You will get there in the end, decision-wise but I remember it as a really hideous time. The most useful thing I did was ask my onocologist if there was any time pressure on making a decision and being told that being borderline on the chemotherapy front meant that there wasn't - I could take months if I wanted to. I didn't, but I did ask all sorts of people for advice (including my accountant - who actually gave me a really good cost/benefit analysis!) before I came to my decision. I eventually started on Zoladex while I made the decision (since I would have taken it during chemotherapy anyway since it's thought to protect the ovaries from damage). Good luck. I promise it will get better but I don't suppose it makes this bit any easier.

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Re: Post surgery...chemo or not - how did you decide?

Ah now that is very helpful Amber - pictures I can do! Thank you. Oh but the chemo/no chemo question - still seems like an impossible decision - aagh!!

amber32002
Member

Re: Post surgery...chemo or not - how did you decide?

"with no additonal therapy 84.3% of women are alive in 10 years, an additional 3.9% with hormonal therapy, 3.7% with chemotherapy - and combined 6.4%."

Blimey, not sure what to make of that either. I think it means 84.3 + 6.4 if you have everything = 90.7% alive after 10 years. So more or less 9 out of 10 people will be as ok as everyone else in the population (because the "ten year" thing doesn't mean we die after 10 years - it means "that's as long as we can be bothered to measure it for".

But don't quote me on it, because I use the simple calculator thingy at http://www.lifemath.net/cancer/breastcancer/therapy/index.php instead

KatyD
Member

Re: Post surgery...chemo or not - how did you decide?

I like Poodle had Zolaex suggested to me and I have now had 3 injections. Chemo would have increased my chance by 2% and he was concerned that the benefits would not outway the risk,so suggested Zoladex.It is not an easy decision to make and as has been said everyones treatment plan is different.
Lots of love thinking of you as you decide
KatyD

Harrietxxx
Member

Re: Post surgery...chemo or not - how did you decide?

Poodle, that very interesting, my onc didn't offer me zoladex, and when I asked about it she said it hadn't been proven to be effective. I felt at the time I wasn't being given the full picture. That said, I am happy with route i am taking, but would not have been happy with just rads and tamoxifen, I want that oestrogen gone as much as possible.

Guest user
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Re: Post surgery...chemo or not - how did you decide?

I also had to make the decision with regard to chemotherapy and after much thought and discussion (it's one of the benefits of being borderline that the oncologist assured me that I could take my time in deciding) I opted to have Zoladex and tamoxifen instead of chemotherapy. My tumour was very hormone sensitive and a study had come out that said that Zoladex (which is a monthly injection to switch off your ovaries) was as effective as one of the main types of chemotherapy in hormone-sensitive, node negative pre-menopausal women but as it hasn't been used as a treatment for that long it isn't included in the statistics in Adjuvant. Four years on, I still think it was the right decision for me although the sudden loss of oestrogen wasn't fun at the time.

Guest user
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Re: Post surgery...chemo or not - how did you decide?

I was triple neg,grade 4 but small and with no node involvement.
So Herceptin and hormones were ruled out. I wasn't actually asked to make a choice but given all the information and assured by onc and surgeon that after much discussion they felt rads and chemo without further srgery would be best option which was what I had.
My family wanted me to have the chemo as well and because I felt I had an option- I tolerated the chemo OK.The worst part for me was losing my hair but I had two wigs which no one realised were wigs until I told them. " months after rads and I have what looks like quite a trendy short hairstyle.
Good luck with your decision! Once made don't look back !
Margaret x x x

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hi
I to was in your position grade 2 her2 positive no node involvement and all cancer taken away at surgery, but they gave me the option of chemo and herceptin after chemo it was totally my choice they only gave me the why's and wherefores and percentages. my decision was like the other ladies and go down the chemo road at least then if the worst happened and it came back at least I could say I done all I could, but at the end of the day the choice is down to you.
I had my fisrt chemo last Tuesday and at the moment I'm coping ok I hope it stays like this.But as I say only you can decide.

All the best Sue xx

Patlufc
Member

Re: Post surgery...chemo or not - how did you decide?

I too am in a very similar position to you all. I have made the decision to have chemo so I can live with the thought I have given myself every chance of hopefully no reoccurance. It would always be in my mind should I have had it if I didn't. A work collegue of mine (although a bit younger than me) was in a similar situation had chemo it is now 7yrs since her treatmants and she is living her normal life, and as she said to me she is back to living how she was before her diagnosis. Good luck in what ever you choose to do.

Pat xx

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hi everyone,

It is really helpful hearing others experiences - and to know that I am not the only one in this borderline category (Jules, Hollyjake, Clare and Simone!) I am slowly feeling a bit calmer now thanks Clare -the 'good' news is finally sinking in...

It seems like the key issues are about how much additional protection one is offered (which has no guarentees of course) versus the side effects of chemotherapy and the additional risks that also adds. I swing between wanting to do as others have said and throw everything at it - I have felt so frightened by this diagnosis and hate the thought of going through it all again at some point in the future - to feeling really concerned about the impact of chemo on me and my children - especially as I am a single mum, freelancer with a demanding job. Is it about weighing up the short term - v- long term impact?!

I have just entered my data into Adjuvant (thanks Lulu for the tip off) - and assuming I did it correctly (!) with no additonal therapy 84.3% of women are alive in 10 years, an additional 3.9% with hormonal therapy, 3.7% with chemotherapy - and combined 6.4%.

Not sure what to make of those statistics - maths was never my strong point - what do others think?! Obviously I will go through this with the oncologist on Monday but I am finding the uncertainty about future treatment very unsettling - would like to know what the deal is and what plans I need to make ASAP!

Thanks for sharing your wisdom people!

Jacqui xx

Harrietxxx
Member

Re: Post surgery...chemo or not - how did you decide?

Hey Jacqui

There seem to be a few of us in the borderline category at the moment. My results were similar to yours and my stats came out at 5%. Like some of the other girls, I could not feel comfortable unless I had thrown everything I could at it now. For me, the end game is to ensure it never comes back anywhere, ever. I know there are no guarantees but at least if it does come back I won't regret not having the chemo.

5%, 1 in 20, worth buying the lottery ticket with those odds I think 🙂

Saying all that, I haven't had my first chemo, it's a week today on 30th Sept, so I may feel differently once the se kick in.

It is a very personal decision, and although my OH is supportive, I do think he hoped I would make the other decision so I wouldn't have to go through it.

Let us know what you decide, so long as you are happy with your decision then it's the right decision for you

Jules
Xx

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hi - I was in a similar position after having surgery and the oncologist showed me the statistics from the computer programme. There was evidence that having chemo would increase chances of a longer , healthier future but what made me take it was a fear that if it did come back they would say "I told you so"!I am a huge coward and dreaded chemo but felt I had to do it. I am now 2 weeks in. I know it will get worse but so far it is just a series of things that happen when you are totally normal! Friends say you just have to trust the medics but I also feel you have to trust yourself and what ever you do, keep any doubts away. My GP - who is against it, I discover after I had "signed up to it" said that! Hope this helps.

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hi Jacqui

Glad you now have your results from surgery. This itself calmed my mind as the worst waiting was over i hope you have found a bit of inner peace too from this.

Your results sound very similar to mine, i was also grade 3 with nodes clear but your tumour was slightly smaller than mine i think. Initially at diagnosis i was told i was a question mark for chemo but as i was grade 3 it has been confirmed i am having it. Everyones treatment plan is personal to them so you may have the choice i cant be certain. If you do have the choice, only you can decide but i had said to myself if they gave me the choice i would have taken the chemo as want to give myself the best chance possible but as has been said it is not a decision to be made lightly.

Good luck with your oncologist appointment on monday they will explain all the percentages and such with you. Let us know how you get on xx

Lulu34
Member

Re: Post surgery...chemo or not - how did you decide?

My unit only offer Chemo if there is at least a 3% benefit from it but on adjuvant mine had a 7% benefit goung from 85% chance of survival without Chemo to 92% with it and was recommended but did have quite a mild Chemo copared to some. You can check for yourself before you see your Onc if you want.... the programme is called adjuvant online you can google for it. It says yo should be a health professional to register but y don't have to be.

And you may not want to see the results anyway but from what you have said they will be pretty good. My first tumour would only have been under 2% as it was a grade 1 was alread 96% cyqnce of survival and Chemo wasnt offered and my current one would be about 15% benefit from 68% to 83% so again it's recommended.

The side effects can be pretty harsh so it's not a decision to take lightly as somepeoe can have lute threatening side effects like cardiac damage, septicaemia and other cancers however these are rare but it's important to be aware of them. And Chemo is not a 100% guarantee that you wont get a recurrence but in your case your risk of recurrence is very low anyway.

Lulu xx

Guest user
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Re: Post surgery...chemo or not - how did you decide?

Hey JacquiD
Basically you are given potential percentage rates on mortality over next 10 years. It's about whether the risks such as the se's outweigh the benefits, and only you can make the decision to go ahead with chemo or not. Personally, I think any increase the treatments offer I've got to take it and give myself a fighting chance because if I didn't take the chemo and I had a reccurence or secondaries I would be left wondering, so I'm going to throw everything at this now. But that's my story, and yours will be different even though my op was very similar to yours. If you're unsure, give yourself the time to discuss with trusted and loved ones, alternatively give the BCC helpline or your BC Nurse a call and discuss it with them. It's another difficult hurdle and I wish you all the best with your decision. I start my chemo on the 29th and am a bit nervous but with the support of family and friends, this site and the fabulous ladies on here I know I'll get through it! Good luck, Simone xxx

Guest user
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Post surgery...chemo or not - how did you decide?

I saw my surgeon today to get the results from my WLE & SNB. They removed a 12mm IDC tumour with some area of DCIS which is ER+. There were clear margins and no node involvement. This is good news I know but hard for me to take in. I feel so numb and and as if I am still reeling from the the shock, anxiety and distress of being diagnosed, waiting, surgery, seromas, waiting...I hope to feel the relief soon!

The surgeon told me that they discussed me at the mutli disciplinary meeting yesterday and are certain that I need radiotherapy and tamoxifen but borderline about whether I need chemo because the cancer is small, has been removed and there is no spread but it is grade 3. I have an appointment with oncologist on Monday (annoyingly moved from tomorrow as she cancelled her clinic!) who will input my data into computer programme and discuss pros and cons of chemo with me. Have others been in this borderline position? What has helped you to make a decison?! How does the whole computer thingy help inform such an important decision?!