To Chemo or not to Chemo
Options
Beachlady
Member Posts: 2 ✭
Hi, recently diagnosed with early BC through a routine mammogram, original thoughts were DCIS but turned out to be Invasive cancer. I had the tumour removed 4 weeks ago and it turned out to be a lot bigger than expected at 35mm (mammogram estimated 15mm), there was no evidence of cancer in the lymph nodes. As the tumour was 35mm Chemotherapy was suggested, I am very chemo adverse and decided to have the Endopredict test done in the hope that it would come back low risk as expected by my Breast Surgeon and Associates (therefore Chemo not beneficial). Unfortunately for me it came back as high risk with a 23% chance of a Metastatic cancer within 10 years without Chemo (just radiotherapy and hormone tablets) and a 16% chance of a Metastatic cancer with Chemo/Radiotherapy & tablets. I still don't want to go down the Chemo route and have a decision to make, has anyone else refused Chemotherapy and just opted for Radiotherapy?
1
Comments
-
Hi @Beachlady It's a dilemma, isn't it? I tossed a coin. I thought my partner was going to stroke out when I told him it had come down to that. When I saw it was 'heads', which was the chemo option, I immediately wanted to make it best of three....
You are right, the odds are not terribly convincing. All that for a 7% better chance? Really? The scientist in me has found that equation less than motivating. Twice. So, I went back for a second go purely on a 50/50 bet. If cancer comes in threes, chemo certainly won't for me.
Having an oncologist lecture about what will happen if you don't (as if it's a sure thing) and ask how you will live with yourself if you have a recurrence (already had one, thanks, lady) really doesn't help. It only made me adversarial. In the end, the only reason I even contemplated it was pressure, subtle but impossible to ignore, from the people closest to me. People who's opinion I respected and who I cared enough about to put myself to considerable, and probably pointless, trouble.
We are almost all chemo adverse. Some will do anything to increase the chances of escaping this disease, but I think most feel like a rat caught in a trap, desperately trying to find a way out if it. I guess it comes down to how adverse you decide you are, and how lucky you feel. Because I really think it all comes down to luck.
Marg xxx
1 -
I agree @Zoffiel. For me there was no question I needed chemotherapy but was so scared of potential side affects told my oncologist on morning of 1st session I wasn't having it. My husband freaked out & said I had to do it for the family & so felt pressured to have it. Glad now I did it but don't know if I would go back a second time. You just have to be happy with the decision you make. The statistics lump everyone together & so I don't really have confidence in them.1
-
Thank you so much for your comments @Zoffiel and @Clemis your comments certainly resonate with me, it's a bloody lottery isn't it. I have my appointment with the Chemo Dr tomorrow who I know will give me the lecture you mention @Zoffiel, I even had the Radiotherapy Dr call me yesterday to cancel my appt as he assumed I would be a Chemo patient!!
Fortunately my family are being very supportive of my thoughts of "No Chemo" (I do not have a partner and my children are adults), it's my life, my body and my decision, let's just hope Lady Luck will be on my side1 -
I knew I had a high risk cancer from the beginning so even though small I already knew before surgery I would be having it.
However that appointment was hard. And there I was waiting for my heart scan sobbing. Somehow. ..I just really hoped that I wouldn't need it.
My chemo regime involved herceptin and I had my treatment stopped after half way as it impacted on my heart. I was then terrified of what that might mean for me. But have accepted the decision and hope it was enough. My heart BTW has now returned to normal function as it was pre chemo.
So ...for cure...we get one shot at this. Once it's stage 4...it's then just trying to reduce pain and extending your life. Cure is off the table. The reality is the time when we are in good health like now certainly means we can recover better and quicker from chemo.
Nobody is pro chemo really. We would all prefer that we didn't need to have it. A 23% chance of mets as opposed to 16% is a reasonable reduction in risk. Why did you do the test if you never intended to follow through with the recommendation? Just wondering, not judging, or was it a way to delay the decision...questions for yourself to ponder ..not to answer me.
I'm sure there are many people who choose not to have treatment but for many they are looking at only 1% to 2% difference and possible much lower risks initially.
I do know of one member who did not choose the recommended path and unfortunately was stage 4 within 4 months. I'm not suggesting this is your path, just that it can happen. Her pathology was different from yours.
People can still progress even when they do everything. It's a bit of a lottery. I know for myself I thought I don't want to be 2 years down the track and regret not trying everything to prevent progression or even local recurrence.
So yes...a big decision.
Chemo is hard for some.
Chemo is easy for others.
Hair grows back.
Energy returns
Cells recovery, we just hope the cancer ones dont.
Australia has some of the best cancer survival stats in the world...why...because of our treatment regimes.
Kath x
6 -
Hi @Beachlady, you should go see my bc team lol iv had a mastectomy in Jan and now half way through radiation. I had 2 tumours invasive lobular estrogen positive , 2.8 &2.4 cm I had one positive lymph node and was told no chemo for me as they said new stats say 1-3 nodes positive the chemo won't work and for me to have hormone treatment for the next 10 yrs or possible longer . I was given the option of radiation which I agreed to have as stats said without rads there is s 15% local recurrence and with rads 5% Iv been told by oncologist I have 20% recurrence of cancer returning0
-
@Beachlady, sorry the rest of my post
0 -
And @Beachlady
0 -
@Beachlady Why would you not give yourself the best possible chance? If Chemo is recommended by your care team then that is what they consider your best possible chance.2
-
Hi @Beachlady - I think my bc is very similar to yours - similar size (I had 2 tumours), grade 3, lymph nodes negative, ER+, PR+ and HER2+. So I am looking at ongoing drugs for some time. I was scared of chemo, but didn't really contemplate not having it due to the explanation given to me by my surgeon around holistic treatment. It made sense to me so I went with it.
Was it worth it? I don't know - what I do know is that I have given myself the best chance possible & my adult children are glad that I did. We are all in this journey together.
I still don't like chemo and I can understand that some people don't want to go there - we all need to control our own journey.
Lesley x2 -
Hi .@Beachlady. I too had originally been diagnosed with a smaller tumour size (12mm) on mammogram and ultrasound but after surgery dx was 32mm tumour (similar size to yours) but 1 sentinel node involved out of 15 nodes. Stage 2b Grade 2, ER+, PR+ HER2-. Further treatment was delayed due to infection and a third surgery through same incision site. I was offered chemo and like you am really opposed to it. My Ki 67 was not recorded on pathology as it is not tested in Queensland according to my onc. I did want to do Endopredict to get an idea of recurrence risk but as treatment was already delayed I was strongly encouraged by my treatment team to go ahead with chemo. The only statistical figure I had to refer to was one through the online predict test which resulted in a 2.3% improvement in non reoccurance within the next 5 years, 7% improvement over 10 years. As other ladies here have posted it is a lottery and such a personal choice. I really struggled with the choice but with great support from family and friends and further support, experience and wisdom
from the ladies on this online network I chose to go ahead with chemo. I have had 2 cycles of FEC, with one more to come then 3 cycles of docetaxel. Chemo sucks as I'm sure everyone would agree and the side effects are different for everyone. Now however I have reconciled my choice as I don't want any regrets even if the lottery does go against me in the future. It is a very difficult decision to chose chemo if you are really opposed to it. Just know that support is out there and as I have experienced is readily available in bucket loads on this online network which ever choice you make. Sending you virtual hugs and hope that the meeting with your onc was productive. Sophie x2 -
Its really hard weighing to have chemo or not....i have just had my first hit yesterday (10 may), for the second time as had 17 years ago and now recurrence which is now stage 4....was i pissed off, you betcha...had 6 months chemo, 2 months of radio and 5 years tamoxifen...and then thought yay, done and dusted.....
Rediagosed as stage 4 in may 2015, mets in spine, liver and lung and kept it at bay for 2 years til now.
You read so much on alternate remedies verses chemo and or combining both, and of course we want that magic cure.
Have to put trust in oncologist and be guided by them but they not very open to less traditonal treatments....and heaven forbid don't ask about mecical marijuana.
I still feel I've done the right thing in having the chemo and then apparently will go back on a hormone tablet, probably extemasene.
So hugs to you, it will fall into place xx0 -
Hi @Beachlady, I had a 2.7cm tumor with satellite (benign) no nodes involved Grade 1. Oncologist told me my Ki 67 was 20% and they wanted to do the onco testing to get a better picture. Everything else for me was low risk. High score on test meant definite chemo for me, low score no chemo. I asked about middle range and was told they didnt know what they would do. So I decided because everything other than this one test pointed to low chance of recurrence I was going to go with the information on hand. So no chemo, no radiation, hormone therapy for however long. Do I stress about my decision - nope because I based it on information I had at the time. Do I worry about recurrence - well really who doesn't? BUT I'm happy with what I've chosen. Wishing you all the best for your decision because it is hard. Xx Cath0
-
@Beachlady absolutely is so so hard. I think its not so much how big your tumor was but maybe your pathology? as in Grade and Stage? I was Stage 2 Grade 3, the grade 3 determined chemo for me. I WAS ABSOLUTELY out of my mind, I did not WANT CHEMO!!!! but because mine was a recurrence it was the only option I had. I think you have to have to look at your personal diagnosis and be guided by your Team. I wasnt prepared to gamble with mine I guess that was the decision I came to, but I absolutely didnt want to do it...but am 17 months post now and really starting to thrive again. Hugs to you, it is a huge decision and only one you can make, so trust yourself to do what you feel is best for you. Melinda x0
-
Hi @Beachlady, for me I had no choice weather or not to go down the Chemo path as my BC was inoperable without it. I have finished 4 x 3 weekly rounds of AC Chemo and am now 7 down out of 12 Taxol treatments. The treatment is working and my BC has shrunk substantially, I have been extremely lucky and have had minimal side effects compared to many. Chemo is not an easy road and we all wonder what it is doing to our bodies but for me I know it is giving me the best chance to fight this cancer. Our bodies are amazing and once I've beaten this I will focus on repairing and staying well. 2 years ago as a family we struggled with this same question when my Mum was facing her 3rd battle with a primary cancer, she was also extremely anti chemo but the surgery options for her were complicated given her previous history. Thankfully Mum (although kicking and screaming at times ) went with the treatment suggested and is now completely cancer free, healthy and enjoying life.
Wishing you all the best with whatever treatment path you decide on.
Kat x0
