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Not sure if to have chemo or not

45 REPLIES 45
SusanCampbell
Member

Re: Not sure if to have chemo or not

This is very encouraging...ill be starting chemo in a few weeks and its good to read some good news stories!
lovemama
Member

Re: Not sure if to have chemo or not

By the way, today is my cycle 6 chemo day, such a surprise, heart palpitation has been included in the nurse follow up side effects/reaction pre-check list. They said that heart palpitation is a serious problem and if too high it may cause stroke. They are instructed if palpitation happens during infusion, they may stop the infusion immediately and apply medicine (they sort of mentioned IV high dose steroid). Infusion will then resume later on the same day or the next day. 

 

My oncologist tends to believe I had reacted to Taxol and not stress out. when my pulse rate was raised up to 17x, I was sitting in the chemo chair, reading magazines and was quite relaxing

lovemama
Member

Re: Not sure if to have chemo or not

I am on Taxol/Pujerta/Hepceptin,

In cycle 4, I build up tingling fingers on top of electrical feeling fingers. I almost took my eyeball out instead of my contact lens. My onco suggested a10% decrease, she was afraid it may become permanent. I immediately turn her down. Even 1% improvement in survival rate, I still won't give up.

today is my 6th round infusion, I have no tingling fingers in cycle 5 and only some electrical feeling. Every time i take off my contact lens I will make sure it wont come out with my cornea though 1 or 2 times almost. Had an apointment with my replacement onco.(my previous left) 3 days ago, I was told they usually won't change the dosage amount and especially Taxol is the main drugI I won't give up unless my onco make the brake. .......MelMel

 

Marla13
Member

Re: Not sure if to have chemo or not

Hi Vivienne,

 

I'm sorry to hear you have cancer cells in your lymph nodes and that your experience with chemo wasn't great. I think this highlights how everyone is different and explains why some people say they prefer to live with the illness, than the side effects of the treatments. I respect everyone's decisions because no two people are the same and we all react differently to drugs and meds. 

 

It is good news that you have trust in your team-that is most important.

 

Sending you healing thoughts...

xxx 

 

 

Vivienne Ball
Member

Re: Not sure if to have chemo or not

After having a lumpectomy with clear boundaries I was told of cancer cells in my lymph nodes positive to Herceptin. I have undergone 4 chemo sessions and 3 weeks of radiotherapy. I am having 3 weekly herceptin inections, am on Letrozole for 10 years and started 6 monthly Zometa  treatments for next 3 years. I cannot complain about my NHS treatments and the staff are so supportive and caring. 

However, I am not sure if i knew before chemo what I was going to go through, I would have undertaken it. I found it gruelling, after each session I ended up in hospital and felt wretched throughout. Others I have spoken with haven't had many side effects and coped better. 

You just don't know though how things will turn out. I am just hoping that by following my Oncologist's advice that it is all worthwhile. The treatments are very expensive for the NHS so they must be sure that they are worthwhile and save lives. 

Sometimes you feel like you are between a rock and a hard place.  Sometimes you cry . at other times you try to put a brave face on.  Talk of cancer and all the medical appointments tend to take over, so I have tried to keep up seeing friends and try to be "normal" as much as possible. 

Marla13
Member

Re: Not sure if to have chemo or not

Hi Sally-that is so reassuring. It's amazing how different women respond differently to the same meds but also how many different meds there are-different combinations, permutations, etc. etc. 

 

I just hope that if I need chemo I'm put on a combination that don't make me feel dreadfully ill. 

 

I'm so pleased to hear your experience has been +. 

xxxx

Marla13
Member

Re: Not sure if to have chemo or not

La la-OMG-it sounds like you'd do well opening your own chemist/pharmacy! 😂 Thanks so much for the tips re-the anti emetics. I don't have any children but to give you a sense of how intolerant I am to sickness....I have had three surgeries for fibroids, and though my anaesthetist was amazing and added to his list "antiemetic" for my recovery (I am usually sick the 1st night in hospital)-the nurses like to start you off on "tablets" which did NOTHING for my nausea, and at my last surgery, I remember having my head over the toilet bowl, with my arm reached out as if to say to the nurse "inject me NOW". It seems only the injections of the antiemetics (the strongest type/intravenously) work for me. This is why I'm already developing a fear of this chemo but to hear that only 2 of your gals were sick is reassuring. I love my food so will have no problem using that as a coping mechanism, provided I have an appetite and can keep the food down:).

 

You've been a real help to me re-my chemo concerns and have provided me (and the forum) with so much helpful info-personal experience cannot be knocked and tends to mean more than what the research says "should" happen.   

 

I'll definitely PM you nearer the time and if I do learn that I need chemo-I know that if I was to PM you now, it will go in one ear and out the other and I'd have forgotten all you've said by the time I have the chemo (if I do find I need it). 

 

I've added you to my Friends list-I won't forget you:). I anticipate my surgery won't be before end of October so it is likely I won't know whether I need chemo till around that time. 

 

I'll keep you posted, and thanks hugely again! Your contribution has been invaluable to me. 

xxxxx

SallyG63
Member

Re: Not sure if to have chemo or not

See now on the taxol I bring home no medication at all. I have one antisickness before the chemo (domperidone ) and then a steroid Iv and a piriton one in case of allergic reaction plus a ranatidine one to stop possible heartburn . Then the paclitaxel then I come home.with nothing till the next week..and to be fair I've not needed anything.
La-La
Member

Re: Not sure if to have chemo or not

I was seld employed too, I think that was a contributory factor for me being given Paclitaxel (it is called ‘Taxol in Velvet Gloves’
I worked from home throughout. Lits of conference calls and web sessions!
My memory was shocking though (still is!) Chemo brain is like Baby Brain!!
I did get gradually more tired/less energy during the Pacltaxel
But NOTHING like I had expected.

16 of us in my chemo gang (we set up a Facebook closed group after meeting in a thread on here (Best idea ever for support during and after chemo!)
Of the 16 only 2 women suffered ANY nausea.
One was anorexic so had no reserves (I ate my way thru it! Put on about 2 stome but didn’t feel sick at all! And I thought chemo made you skinny from throwing up! 🙄 Not any more)

The anti emetics they give you are amazing nowadays.

EMEND is the big one that you take at home in the morning of chemo then took again the day after.
You are sent home with a big bag of drugs to help you after chemo and stop you feeling sick.
STEROIDS: For anti nausea/infection (I stopped taking these cos I got too wired!)
In addition to Emend and Stetoids I had 3 types of anti nausea tablets to take at different times during the day:
Ondansetron
Metoclopramide
Levopromazine (was meant to be in case of severe nausea at night, but I took it as it made me sleep like a baby for those first 2 days after! Nurse was not happy with me 😂)
No-one else in my gang got given Levopromazine.Think I did because I suffered really bad morning sickness when pregnant so they thought I may suffer. I didn’t 👍

PM me if you want to chat. I may have some useful i fo I could email you.. I did a LOT of research!!
Marla13
Member

Re: Not sure if to have chemo or not

Sally-you're another one of my heros:). Thanks for contributing and sharing your experience. It's reassuring to know that some women don't feel sick! It's also reassuring to know you've been able to work throughout. 

 

Only time will tell what I will need-I have yet to have surgery-not for another 4-6 weeks I imagine but I will check back in here (this thread has been so helpful) for when I find out my chemo fate. By then no doubt you will be all done-I'm so happy for you that you're coping this week with it. 

 

Sending warm wishes and lots of hugs and wishing you a speedy end to your treatment...

 

Just to add: this is such a useful thread-I hope everyone is OK with it being revived since it's start date a few years back. 

xxxx

SallyG63
Member

Re: Not sure if to have chemo or not

Hi Marla,

I am partway through the same chemo. I've had 4 x EC fortnightly, and so far had 7 of 12 weekly Paclitaxel. I've commuted to London and worked throughout only having Fridays (chemo days) off. I've not been nauseous once. I had loads in my lymph nodes, though thankfully not spread elsewhere so even though they removed them, having chemo was a no brained.

Unfortunately I was unable to have any sort of reconstructure so can't give you any info on that.
Marla13
Member

Re: Not sure if to have chemo or not

Hi La-La,

 

First of all, congratulations on being 2 1/2 years clear. I am so very happy for you-that's wonderful. 

 

Thank you for such a detailed and thoughtful reply. I've bookmarked it so that I can return to it later once I know what I'll be doing treatment wise:). You speak a lot of sense. 

 

I'm so sorry to hear that you got a different size boob than you had expected and are now awaiting revision surgery; what a pain. I'm also sorry to hear you had to come to London for your surgery but it sounds like you were pleased with the experience? (as much as one can be) and other than the cup size shocker!

 

So much of what you are saying rings bells for me because I've only met this consultant twice but on both days he asked "what's your cup size". 

 

He also echoed what you wrote in that a Mx with immediate reconstruction will offer me the best aesthetic outcome. 

 

I *am* a little worried re-chemo if I need it because I don't cope with nausea well at all but it seems you felt little nausea? or do you just cope paritcularly well with it?

 

I admire the fact that you worked through your chemo-I am self employed so would love to be able to do that if I need chemo, and if I can. When you say "ask if you can do this"-are you referring to having Pacitaxel over 12 weeks? I'm very *unfamiliar* with all the chemo drug names. It sounds like you're saying that FEC-T in 4 cycles with Docetaxol causes more side effects, etc? 

 

I'm at the "collect as much information as you can" stage-this is still very much a learning process for me and your experience and messages are arming me with knowledge. 

 

Thank you so much, and again, I am so very happy you are so far down the line-you're another one of my heros! 

xxxxx

La-La
Member

Re: Not sure if to have chemo or not

I’m 2.5 years clear now.

I had no doubt about opting for bi/mx with DIEP flap recon. Researched the hell out of all options (had chemo first so lots of time to think about it)
Had to go to London for surgery though, as my local Surgeon in Hampshire refused to do it simultaneous even though DIEP flap result is better if you do... (plus no dreaded expanders!!)
Bloody amazing procedure! (Available on NHS...Charing Cross specialise in it)
But I ended up having a load of issues in my recovery, and am not happy with the result (GREAT TIP: WRITE ON YOUR CHEST WHAT YOU AGREED TO BEFORE YOU GO INTO SURGERY!! That way I would have got the D cups I had agreed on intead of the H cup momster moobs he gave me!!)
Currently on an 8 mths waiting list for revision survery! Not ideal.

Hopefully on e revision surgery is done amd I have my flowery tattoos I’ll be 100% happy. Just been a long tough recovery. (My friend had single MX/DIEP recon by the same team and had ZERO issues, so I think I got unlucky tbh. Smaller boob recons seem less problematic.)

MX with simultaneous LD Flap recon seems less problematic, but every option has pros and cons.

Chemo was not anything like as bad as I expected.
Day 1/2 Felt wired (lke I’d had way too much redbull)
Day 3/4 felt OK
Day 5/6 crashed... just felt incredibly tired. Just needed to lie fown and close my eyes (seriously, I have had worse hangovers!)
Day 7/8 Iiterally woke up feeling completely fine.
Then had 2 weeks of normal before next cycle.

Each cycle the ‘crash’ bit extended a day so by the end it lasted a week, but still just super tired, not ill.

I had EC every 3 weeks for 4 cycles
Then had the ‘T’ bit (Taxel) weekly (Pacitaxel, not Docetaxol) over 12 weeks (splitting it out is gentler than having FEC-T in 4 cycles with Docetaxol.)
I had to work throughout chemo, so was critical I was not wiped out.
Ask if you can do this. Push for it. I had an easier time than my buddies on FEC-T, although they were finished in 12 weeks and I was 19. Swings and roundabouts!!)
Marla13
Member

Re: Not sure if to have chemo or not

Thanks very much La-la for replying! So to be clear: it sounds like it is more a cost exercise, in that if there are no positive nodes-they might do the test just to be sure-but if there *are* positive nodes-they wouldn't do the test because chemo would be indicated and it would be a waste of £££ to do the test? This is my understanding anyways. 

 

Can I ask: when you say you have days when you wish you had gone for lumpectomy over mastectomy...why is that? Have you had reconstruction, or did you opt not to? I'm just wondering why you sometimes wish you hadn't had a mastecomy. I'm opting for a mastecomy (just my L boob)-right one thankfully not affected...apparently, the distortion (if I were to have a lumpectomy) would be significant given the size of my boob relative to the size of my cancer-smaller boob, larger area of cancer:). I'm OK with the mastectomy decision, especially if it means I can avoid radio which he said it would mean, but I'm awfully confused over why I will be able to avoid radio, but possibly not chemo. I don't understand the difference between the two and it's the chemo I would *love* to avoid. Hence my Q. re-the oncotype test etc:). 

 

I hope you have come out the other end of the chemo? i.e., I hope you're all done? 

 

xxx

La-La
Member

Re: Not sure if to have chemo or not

If it has spread to your nodes then there is not much point to the ONC test because there is then a higher possibility that some cancer cells have slipped into your bloodstream and the little buggers may be floating about looking for a new home. That is why they recommend chemo pretty much for all if it has reached the lymph nodes.

Mine had not spread, but the bogger of my two lumps was HER2,+ and that is also a contraindication for the test /no chemo option because is is way more aggressive and likely to spread than just Hormone positive.

There are days I wish I had braved the no chemo version.
Also days when I really wished I had opted for lumpectomy versus bilateral mastectomy, but I had lumps both sides and my surgeon was wary of radiating both sides. With the mastectomy I avoided radiation therapy at least.
But I am a single parent of a then 11 year old, so went the full monty just to be sure.
Marla13
Member

Chemo or not chemo-oncotype Dx testing question

I am replying to this 2015 message only because it addresses one of the Q's I had for my consultant today-I will post a more "full/comprehensive" message on another thread but this was my post-MRI appointment and it was as I expected so no real surprises...I need a mastecomy on my L boob:)

 

My Q. for him was: can I have the oncotype type Dx test before deciding if I have chemo (if chemo is indicated-which he said it could be)-at the moment, it isn't-I have Grade 2 IDC which he is confident he can treat with mastectomy but when I asked the Q. re-oncotype Dx testing he said if there are no positive nodes-yes, I can have the test, but if there *are* positive nodes, I can't have the test on the NHS cause they won't fund it but I can have it tested privately. 

 

I'm just trying to get my head around what this means-is it because if there are no positive nodes, they will do the test to be sure that I *don't* need chemo, whereas if there are positive nodes, they won't do the test because a positive node would indicate have the chemo and they would see it as a waste of £££ to do the test?

 

I just want to know-when the time comes, that the benefits for chemo outweigh the risks and I understand that this oncotype Dx test can help one make that decision. 

 

If anyone can shed some light on what he meant by "if there are no positive nodes-yes, you can have the test, but if there *are* positive nodes, the NHS won't fund the test". 

 

Thanks a million! 

xxxxx

amu1983
Member

Re: Not sure if to have chemo or not

I'm wondering if user "JCJ" or any other nay-sayers to chemo are still alive 2/3 years after their stage 3 detections. Last year, my mother, diagnosed with stage 3 made the mistake of saying No to chemo, and this year, she's no more to see Christmas lights. Last 3 months of her life went in extreme agony and she repented her decision on several occasions. We, the family, felt the same. We should have quit our jobs and stayed with her, if that would have pursuaded her to go for chemo. Dying of an aggressive cancer is far, far worse than any negative effects of chemo. At least, those side-effects can be managed, and they are, as the name suggests, just "sideline inconveniences" compared to cancer pains and how cancer eats you up inside, alive. In my mother's case, it had spread in her spine, making it impossible to lie down and get a decent sleep. She had to sit in a chair, uncomfortably for all her last 3 months, managing to sleep at best 2 hours at a stretch. Her movements became more and more difficult by day, and she could barely stand up for 1 minute at most. One minute soon reduced to 40,20,10 seconds, making palliative care more and more difficult. Imagine the nurse having to change diapers, give sponge-bath in 10 seconds! It had also spread into her liver affecting her apettite. A month before her death she could eat a bowl of something, which quickly became half-bowl, down to 2 spoons, and then nothing except coconut water. You could see her getting weaker and weaker by day. An alive, cheerful, talkative person reduced to pale, weak patient who could barely speak a sentence at stretch. Aggressive cancer can spread fast. By the time you're done reading this paragraph, an there could be hundreds of more canver cells in your body by now, each ready to replicate and produce a hundred more.

 

I hope anyone reading this, if/when faced with a difficult decision of having to undergo chemo, will choose chemo. I'm not affilitated to any hospital or a pharma company and have absolutely nothing to gain from writing this. I'd just ask everyone to have a bit more trust in his/her doctor and follow their advice. When in doubt, do go for a second opinion, but don't risk your life on some new/old herb or any quack-therapy.

red_robin
Member

Re: Not sure if to have chemo or not

Is the test available if grade 3 er- and her2-, 7cm because invaded a cyst that it was on the side of? It kept getting bigger each time they drained it and the cncer cells were found in the fliud only when removed not from draining.

galklein
Member

Re: Not sure if to have chemo or not

Maybe this new research can bring some insightful information:

"New Study Finds Not All Breast Cancer Patients Need Chemo"

https://www.audioburst.com/burst/c2a49a46-4abb-4b3a-96fd-e0cd7d73ee98/New-Study-Finds-Not-All-Breast...

JCJ
Member

Re: Not sure if to have chemo or not

For what it's worth: I had to face the same decision 3 years ago. (See earlier post) WLE. SNB - clear.28mm Grade 3. ER+. Her-. It was a horrible decision to make, but the fact I wasn't told I definitely needed it, combined with the information that it wouldn't be a guarantee of stopping the cancer coming back, gave me the confidence to refuse chemo.
Everyone has to do what's right for them. Only you have to live with your decision, but despite having spent the last 3 months being investigated for liver mets (now confirmed as gallstones and not BC related) AT NO POINT DID I REGRET SAYING "NO" and getting on with my life, because I knew that even after chemo, I could have been in the same situation!
I talked to the BBC helpline, Macmillan helpline and anyone else who'd listen. Nobody could advise me, but talking and asking questions helped me make my own decision and live with it.
Good luck whatever you decide.

JETS
Member

Re: Not sure if to have chemo or not

Insist on the onco test - its available to grade 3 and you meet all the criteria for the nhs paying for it from April. It will give you info - I didn't have it and am on chemo under recommend of oncology - I have no regrets but I do think it helps on the risk assessment to you personally as it is based on your tumour not one of these out of 100 people stats xxx hugs xx
Murphy1963
Member

Re: Not sure if to have chemo or not

Hi daisy, I had a WLE and SNB august 2014. My lump was also 9mm, hormone+, her2-, grade 3, no node involved. I was borderline for chemo because of the grade. Although I asked to go on the trial at that time for the oncotype dx test, I wasn't allowed, and my oncologist wouldn't sway me either way re chemo. After a lot of thought I decided to go ahead with chemo. I have a 10 year old and needed to make sure I had done all I could to stop a reoccurance.

Chemo is definitely hard going, but it's doable. I was suppose to have 6 x Fec but unfortunately I became very ill after the 4th and was advised the risk of continuing outweighed the risk of stopping. I was really disappointed to stop early and even after all my complications, I have no regrets in my decision to have chemo.

I based my decision on the fact I am a worrier, and if I hadn't had chemo I would always have worried that a tiny rouge cell had escaped, I wanted a belt and braces finish. If you do decide to go ahead I would defo join one of the monthly chemo threads. The support from ladies in similar boat has been my saviour. If you need any info please get in touch. Hugs to you xxx
La-La
Member

Re: Not sure if to have chemo or not

In the same boat, Daisy.
(This is an old thread so we may be better off to start a new one, a lot of original posters may have left the site by now.. off living their lives and chemo is a distant memory... us in a year or so's time!!)

If you are Stage II, HER2 negative, and it's not in lymph nodes, you qualify for Oncotype DX test which far more accurately calculates your percentage survival rates based on really advanced diagnostic tests.
This test allows you and the oncologist to make a far better educated decision whether chemo is necessary.
(This test is available on NHS from Jan 15, but I suspect we may suffer postcode lotteries on adoption!) (just spotted it is in your sentinel but ask anyway, there are exceptions and I think 2nd occurrence may be one)

Investigate the options to chemo and ask your oncologist if they are viable in your case.

Personally, I have an 11 year old son that I want to grow old for and see grow up, so if that means I have to put up with 5 months of feeling tired/food tasting funny/nausea and wearing a wig, then I consider that a fair trade!!

There are some early stage cancers where chemo is overkill, yours is a mix.
9mm is small and you are not HER2+
But it is Grade 3 and was in your sentinel node, which is probably why they are saying chemo is necessary.

Just talk openly with your BCN and oncologist. They are there to answer any questions you have.

Pm me if you want to chat offline.
Niki
daisyj1
Member

Re: Not sure if to have chemo or not

Hi I have been diagnosed with breast cancer. 9mm grade 3 tumour er+ her- and one sentinel node positive.I have had WLE and axillary clearance and been told that I will get a 4.3 % benefit with chemo and have to decide whether to have it or not. I had CMF Chemo 15 years ago for cancer in the other breast and the thought of going through that again strikes fear in my heart.
Is anyone else in a similar situation or has any advice to offer?
Egret
Member

Re: Not sure if to have chemo or not

Thank you, what you wrote really helps because I have to make a decision soon. I am 66 and pre-diabetic. Chemo is often given with steroids to lessen nausea. Steroids WILL make me diabetic and the damage is irreversible. I am asking for a Oncotype DX test through the access scheme, available according to NICE from 1st April 2015. The Oncotype DX test is an extra tool to help decide whether chemo is for you or not. I will be sending my letter to the oncologist today by guaranteed delivery! The Oncotype DX test has been used in the US since 2004, and seems now routine there. I hope you are okey, I know your post was 2013.
LauraLaura
Member

Re: Not sure if to have chemo or not

They do use grade, hormone status, her status, nodes, grade and age. Both websites do. So I'm not sure what you were looking at but its wrong. Comorbides are accounted for in the adjuvant one. However, Drs can tweak the results one way or another using the prognosis butten. I think the Predict website has the better one.
LauraLaura
Member

Re: Not sure if to have chemo or not

You can get into the adjuvant website as I did. They dont check your credentials.
LauraLaura
Member

Re: Not sure if to have chemo or not

 

I made exactly the same choice as you for exactly the same reason.  Chemo is not something to be taken lightly.  I had a 15cm her+ stage 1a grade 3 and im 50 and according to the prediction and adjuvant websites chemo may ony improve my odds by 8 to 12 percent. However, upon researching the vital staistics of the particular chemo treatments I found the risks to be higher that the possible benefits.  

Now if I had stats that were different like a 50 percent chance Il die with out and in improves my odds by 40 percent then I would probably take the risk. 

Be careful to check what info the Dr enters on the Adjuvant website and the prognois button allows them to make your outcome look better or worse. 

I enjoyed reading your thoughts JCJ. As they were very much like my own.

Guest user
Not applicable

Re: Not sure if to have chemo or not

I was dx nearly 5 years ago. Initially I was told that I wouldn't need chemo, but that changed. I was scared stiff. No need. Please don't be scared about chemo, it's doable. You'll be soon looking forward to your life back.
chascat
Member

Re: Not sure if to have chemo or not

Debcully, just wanted to say it isn't just node status that determines whether chemo is recommended. Grade 3 cancers, large tumour size, her2 status and age are all reasons to have chemotherapy, and if you are her2+ you have to have chemo with herceptin x

Pollymg
Member

Re: Not sure if to have chemo or not

Hi,
For me any chance of improving survival rates was worth taking. Chemo is temporary, yes horrid but if you take each cycle at a time you reach the end before you know it. I found that I improved quicky once it was all over and enjoyed getting back to life again with a new spring in my step. I felt like I had achieved something.
Good luck with your decision
Lakeslover
Member

Re: Not sure if to have chemo or not

Hi,

i was also offered the choice, and opted not to have chemo. For me the benefit was 1 to 2% only. I felt the side effects would outweigh that benefit.

it is a very personal choice, and as you can see we all make different decisions. I wouldn't want to influence you either way, I would say listen to your oncologist, ask for as much info as you need, but once you have made your choice, remember you have to be comfortable with it, and not constantly ask yourself "what if".

Lynda

Debcully
Member

Re: Not sure if to have chemo or not

Jcj good for you and I totally agree they wouldn't offer it if not needed if its expensive but I will definitely be asking about how much the zoladex will make a difference if they do say I need chemo x which obviously I'm hoping my nodes will be clear so I won't need to even consider this x
JCJ
Member

Re: Not sure if to have chemo or not

Hi. I was put in the same awkward position as you and had to make the decision about whether to have chemo.
My onc showed me the prediction tool online, taking into account my age (51 at dx), tumour size (28mm) and grade (3), the fact that it was HER-ve and Er +ve. I had clear margins and no lymph involvement. All these things gave me a 5% survival improvement over an already good 80%, after 10 years. My onc stressed that this was just a statistical tool, and that there was no knowing whether those who had chemo would have escaped a reoccurence anyway, even if they hadn't had it. She also pointed out that chemo was NO GUARANTEE that the cancer would not return and that there can be long term side effects from chemo that are not to be taken lightly.

Eventually, after a lot of soul searching, I decided NOT to have chemo because I have always been of the "Quality not Quantity of Life" mentality. I lost both parents to heart conditions at relatively young ages (Mum 51 (age I was at dx!!) and Dad at 73. My grandparents all died before they got past their early 80s. I therefore did not want to spend 6 months of my life getting poisoned WITH NO GUARANTEE it would stop the cancer returning. I made the brave (or foolish?!) decision to get on with my life and try to put this behind me, knowing that if the cancer camer back IT COULD HAVE DONE ANYWAY and I'd me more annoyed at it coming back after 6 months of chemo, as that would have seemed such a waste of time when I could have been getting on with life. When I told my onc my decision she said "Yes, it probably would have been overkill, in your case". Argghhh!

However, I do not want to persuade you either way. You must make your own decision; one that you are comfortable with, as it is you who will have to live with it. I just wanted to let you know that there are some of us who did say "no" to chemo and haven't regretted it.

Chemo is expensive, so they wouldn't offer it if they didn't think it might be of some benefit, however, if your team knew the benefits would definitely outweigh the risks, you would not have been given the choice!!

Find out all you can about your own diagnosis. If your cancer is ER+ve, there are other treatments available. As soon as I declined chemo I was offered Zoladex injections which gave back 3% increase in survival. This has happened to other ladies too!

It is a horrible time for you, but once you have made your decision - if it's the right one for you, you will feel better.

Good Luck xx
Guest user
Not applicable

Re: Not sure if to have chemo or not

Hi there,
I know this is a very difficult time for you, I was diagnosed with grade 3 breast cancer in Dec, nodes clear, i had a mastectomy and was told I would benefit from chemo due to the grade, my risk of reoccurance is small but any risk to me is a risk and like most ladies on here have already said I want to know I have done everything I can to prevent reoccurance. I know its not the same but i have a friend who was diagnosed with BC a year ago, she was offered a mastectomy but chose a lumpectomy as she felt the risk of reoccurance compared to a mastectomy wasn't high enough, she regrets this now and has been back to her surgeon to ask for a mastectomy but he has refused stating he would consider it after she has been clear for five years- her cancer was unusual and she was given 85% chance of reoccurance. She had chemo and rads but deeply regrets not having a mastectomy. Like someone has said choose life, chemo is doable, yes its hard but this time next year you will look back and feel stronger for having gone through it without having any regrets.
Take care, will be thinking off you.
Sarah xx
Lola65
Member

Re: Not sure if to have chemo or not

Just to add to my previous post. My oncologist used the Adjuvant! website, which is only accessible by health professionals. This takes account of age and also excludes deaths from other causes. All the statistical deaths were from cancer, and all the comparisons were people of the same age at diagnosis..

In my case I was told 17 out of 100 people would die of cancer within 5 years without any treatment (chemo and rads). Add in the chemo, rads and in my case Herceptin, that 17 reduced to 2. No-brainer. My oncologist also told me that the cut off line at my hospital is 2%. Anyone with more than 2% extra chance of survival would be offered chemo. Anyone under 2% might be advised it wasn't worth it because of the morbidity of the chemo itself.
(Aged 65/Grade 3 IDC/High grade DCIS/hormone neg/HER2+++/nodes clear/lumpectomy with good clear margins)
Morwenna
Member

Re: Not sure if to have chemo or not

Just wanted to add my viewpoint on the "5 year survival" statistics. Feel free to correct me if you think I am wrong.

As far as I am aware, the general 5 year survival rates include all women with the diagnosis (maybe narrowed down to stage, but with or without grade and/or hormone receptor status) , irrespective of their age or comorbidities (other health issues), so you could be comparing healthy 40 year olds and 85 year olds with multiple health issues. There is normally no distinction in actual cause of death.

The other thing to bear in mind is that the figures are necessarily based on old figures, as they have been collected over time, analysed and collated, and so might not be commensurate with recent advances in treatment.
Therefore I say, take them with a pinch of salt!

That said, my own prognosis with one of the predictor tools, which did include er/pr and her_2 status, as well as grade and stage, put the 5 year survival rate at 40% without chemo following surgery, and 70% with it! Chemo for me was a no brainer anyway, but I am hopeful that I will still be around for a long time after all this. I am 53, and I have things to do!!
Jayne_m
Member

Re: Not sure if to have chemo or not

Hi
I am older, 52, and was dx with grade 2 stage 2 IDC no nodes ER+ HER-. I was given the choice of chemo and advised that statistically I had only 3% higher chance of survival with chemo - the odds were good anyway at over 90% but I saw the extra 3% as a gift. Put it this way, I was determined to do all I could to beat this disease and I did not want any regrets. Your decision is personal to you and chemo is no fun but it is a relatively short period of time to have the peace of mind that you have done all you can. I had my last chemo 8 weeks ago and although it was tough at times, it was doable and given the same choice, I would do it all over again.

Good luck with your decision and for the future.

Jaynex
tors
Member

Re: Not sure if to have chemo or not

Hiya, I'm another member of the pro-chemo gang. I was 36 at diagnosis (3years ago) and , like you , I had a stage 1, grade 3 tumour. Yes, on the statistics I was given, I had a pretty good chance of still being around in five years if I didn't have chemo, but and extra 5% chance of being around if I did have it. That might seem quite a low percentage of extra benefit, but not when you look at it in real terms. I run a Facebook support group for younger women, we have just passed our 300 member mark. If 200 of those women had my exact diagnosis, and I split us into two equal groups, at the five year point we would expect to still see about 90 women still alive and kicking in the 'we had chemo' group, but only 85 women alive and kicking in the 'we decided not to have chemo' group. For me, those are 5 real women and I want to try my damnedest not to be one of those 5 women who would have been saved if they'd chosen to have chemo. The reason that those extra five women with no evidence of disease in their nodes will have died is that breast cancer cells do spread through the lymphatic system and usually show evidence of having moved that way in
the nodes, which is why it's used as a threshold for having chemo. But cancer cells also escape without trace, and certainly can through the blood stream. The higher the grade of the cancer, the more chance there is that this could happen, and your cancer, like mine, was grade 3 so the most likely grade to do this. It isn't a high risk, but when you are talking life or death then the numbers seem more stark. The statistics aren't massively reliable either the younger you are, our breast cancers are often the more likely ones to have gone for a wander around our bodies and we are more often the ones to buck the statistics. I'd personally be biting the hand off of any person who gave me the chance to be in the group where five extra women are alive after five years. I don't know what your own statistics are but before you turn down his advice, I'd recommend that you know exactly why he was offering chemo in your position. From my three years BC experience on these forums, I'd have been much much more surprised if a young woman with a grade three cancer hadn't been told that chemo was the best treatment option for her and I've have been putting my head above the parapet to urge you to get a second opinion. Sorry to be tough in my response, but I thought you wanted genuine valid views and this is my strong view. If the chemo side effects became too dangerous for you at any stage and the risk outweighed the potential benefit, your team would stop you having more chemo in the blink of an eye. If it became too much for you, you could also refuse to have more chemo. But isn't it worth seeing how you get on rather than not trying the recommended route a all? It's really scary,I know that, but a lorazepam off your oncologist on chemo morning will get you not that room and allow them to possibly save your life. X

Lola65
Member

Re: Not sure if to have chemo or not

Hi Amazon,

Did your oncologist say why he was recommending chemo? Did he show you the statistics for your personal diagnosis on survival rates without treatment and then with treatment? He must have had a good reason to recommend chemo, and if you don't know why, then I advise you to ask for another consultation and make sure he explains it to you. Chemo may mean putting your life on hold for 18 weeks, but at the end of the day you need to know you have done all you can to beat this evil disease.

I am grade 3 IDC with completely clear nodes and no vascular invasion, hormone negative but HER2 positive. The difference between chemo and no chemo to my statistical survival chances was significant. It is a no-brainer for me. I am 65 and I intend to live another 30 years, and if that means 18 weeks of hell, then I will take it.

Good luck with whatever you decide xxx
GMT
Volunteer
Volunteer

Re: Not sure if to have chemo or not

Hi Amazon,
I went along to see my onc thinking that I was to have no chemo, possible rads and definitely hormone therapy. He said def rads and hormone therapy and in his opinion he would advise me to have chemo, though I was on his cut off point. He set a date for my first chemo but gave me a week to think about it. I felt it was a no brainer, I now feel that if it should return I did everything possible to prevent it. Chemo wasn't pleasant but it was doable and join the April thread if you do go ahead. You will get loads of support and be of support to others.
Good luck and whatever decision you make it will be the right one for you,
Gaynor xx

Guest user
Not applicable

Re: Not sure if to have chemo or not

Hi Amazon - just to let you know I have started a 'having chemo in April' thread if it turns out that you are having chemo. A few ladies have already replied who, like me, think their chemo will start in April some time. It will be nice to see you on there if it turns out chemo is the best option for you.
take care xx
Brizie
Member

Re: Not sure if to have chemo or not

Hi Amazon,
I didn't have any choice on chemo when diagnosed with IBC I was having it or I would be dead within a very short period of time - but had to face a similar decision on having further chemo later in my treatment plan. It was difficult because I was expecting to finish treatment and wammo there we are more chemo.
For me the decision was easy - you are only 40, I am 48, I have a family and I don't want to take any risks and to ever face the time when they say to me there is no more treatment they can offer me and my cancer has spread.
The thought of chemo is scary but it truth for most of us its hard but do-able. I agree totally with Dyane one tough year of treatment! I was diagnosed Feb 12 and am now finally out of treatment. My hair is back, I feel great, my strength is coming back and I have no regrets for pushing for the maximum treatment, I would not let them turn my chemo down, had radiotherapy recall throughout my second chemo cycle but I would not change anything.
I chose life. xx Good luck to you.
Guest user
Not applicable

Re: Not sure if to have chemo or not

Hi

I was diagnosed with IDC grade III, 2cm, 0/2 nodes, ER+, HER2- on 28 Dec 12. I had WLE & SNB on 17 jan (my 44th birthday lol). My onc was on the fence whether I should have chemo or not, she left the decision entirely to me. I myself was unsure whether to put myself through it, & it was my mum who advised me to go for it. Her though was that I was too young not to have it, better to go through one rough year to add many to my life. I was terrified of chemo (you hear all these horror stories), but I was more terrified of cancer returning, so decided to go for it. I am having 6 x FEC, & am due to start round 2 on Wed. While I've had good days, & bad days throughout my first FEC, it is definitely manageable. I will also have 6 weeks rads (my tumour was actually on my chest wall above my breast, so 5 weeks to the breast & 1 week to chest) & tamoxifen.

No one can make this decision for you, make the right choice for yourself because its your life, & whatever you choose you'll have to live with.

All the best whatever you decide & feel free to PM me any time. I am part of the February Valentines forum, who all started chemo in Feb, they are a fab bunch of girls, very supportive, so feel free to pop in there anytime.

Dyane
Mungos_mum
Member

Re: Not sure if to have chemo or not

Hi Amazon,
How doesn't this damned disease cause us problems? We'd hope that the only thing to deal with would be the diagnosis in the first place, but the number of choices we have to make, if we are honest in quite a speedy fashion, without much prior knowledge or understanding. Some one once said to me that you don't want chemo. I pointed out that I didn't particulary want BC either! However, because the benefit I would get from Chemo was substantial, I had no qualms about going for it. BUT every case of BC is different, and each treatment plan has to be put together independently.
Did your Onc go through the additional benefit of adding chemo to your therapy? They do not recommend chemo unless they're sure of a reasonable benefit, but if the benefit is small they may leave the decision to patient.
Do you feel you have sufficient information to make a decision? If not, I would ask for another consultation and ask searching questions about benefit and consequences of both having the treatment and not having the treatment. No one else can make the decision for you, but don't forget that you are young to have breast cancer (it still makes me smile when every consultant I meet tells me at 43 that I am young to get Breast Cancer) and should expect to have an long life ahead. That is what the treatment will try to do, keep your life span as close to the original as possible. The lumpectomy and Rads is to remove the original cancer, the chemotherapy and hormone tablets are a belts and braces, mop up the strays.
I have been diagnosed with grade 2 IDC, 3/26 nodes and had a mastectomy, and will have chemo and Tamoxifen, but no rads.
Good luck. Just take the time to make a decision you are comfortable with. Feel free to pm me if you have specific questions.
Best wishes, MM xx
Guest user
Not applicable

Not sure if to have chemo or not

I have just reached my 40th birthday and have been diagnosed with grade 3 stage 1 nodes clear BC i have had a lumpectomy 4 weeks ago, i was told i would have to have radiotherapy and 5 years of hormone tablets, but when i went to see my oncologist he said he would recommend i have 6 months of chemo 😞 im so confused over what to do?