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Stopping Anastrozole

197 REPLIES 197
FrauCassidy
Member

Re: Stopping Anastrozole

Hi Ladies,

I believe the risk of uterine cancer are higher than tiny. I know of someone who took Tamoxifen then died of uterine cancer. It spreads fast if undetected. Plus my gynecologist wanted to do yearly uterine biopsies to make sure to catch it. This alone scared me. And makes no sense either; to take a medication for breast cancer that can give you another cancer!

I too have stopped all hormone blocking treatments. Although for myself I did not have any spread to my lymph nodes. I also did not require chemo. I had lumpectomy and completed radiation treatments. I was 54 at the time of DX, now 56. I am through menopause. My last bloodwork after a break from Tamoxifen indicated trace amounts of estrogen. My oncologist still wanted me to take the blockers. I said it is really necessary? She said it can come back anywhere if it comes back, not just BC. So I gave anastrozole a try but cannot do it. It was horrible. I felt like I was aging super fast and everything was becoming a problem. I felt 100 years old in a short 3 months! I stopped a little more than 2 months ago and feel so so much better! I may be making a huge mistake but I just can't live like that. None of us are guaranteed extended life or shortened life for that matter. I am taking my chances and having faith they got it all. Prior to BC I was taking an estrogen gel! Now, nothing but what my body has. I don't feel my body makes extra estrogen that's why I was taking estrogen in the first place. But the little my body has, is enough to feel good enough to live life.

However, had it spread to my lymph nodes, I would take it, it may just give you some extra time. This decision is not for all cases. 

MellyL
Member

Re: Stopping Anastrozole

Absolutely JD! No guarantee either way and percentages are just statistics. 

That's why I started this thread, why I've stopped all hormonal tablets now and declined chemo.

After 4 years, I am going to end my input here and forget BC as much as possible.  Love life! X

JDrumright
Member

Re: Stopping Anastrozole

You may live just as long or longer without Anastrozole, as taking it doesn’t  guarantee the cancer won’t come back, and not taking it doesn’t guarantee it will come back. I have done quite a bit of in-depth reading about it, it reeks havoc on your body! I’m only 54 and I elected to stop, due to dangerous and miserable side effects. 

JDrumright
Member

Re: Stopping Anastrozole

My oncologist told me that the risk of uterine cancer from Tamoxifen is tiny. But, at this point I don’t know what to think!

waveylocks
Member

Re: Stopping Anastrozole

Hi Momcat,

please can you send me the data on tamaxofen " frequently causing uterine cancer"? Thanks. Am on a break from treament after being on Aromasin for 7yrs and my oncologist wants to move me across to tamaxofen for the last three years. 

waveylocks
Member

Re: Stopping Anastrozole

I have been on this drug for 7years. My oncologist wants me to take it for ten. Am told the second five years gives a further 5% reduction in reoccurance. I didnt feel too bad for the first five years, fatigued was my main symptom but have declined especially in recent months. I am now fecal incontinent and have a uterus prolapse......the pandemic prevented access to any help. Am waiting for an appointment with gynae but there arent any so have had to wait a further two months untill the end of June to even ask for an appointment. So heading to the incontinence team and a pessary to be fitted. Im 65 and I feel soooooo old. I am exhausted all the time and if I push myself to do more I crash. Ended up seeing my oncologist privately as the NHS had signed me off. So he recommeneded I stopped. This drug has affected my brain  -memory and processing. I cant work at the moment because I cant concentrate. I think I shouldve been switched at the five year mark to be honest. Am on a three month break now but have serious doibts about starting on tamaxofan. Is it worth it for a furthe 3% rediction of reoccurance. Am highly doubtful of that. I think my body has had enough and it needs to breath! 

I would advocate the five years for sure.......for me it reduced the reoccurance rate a lot. Am lucky to be here in full remission as I had stage 3a breast cancer, HER2+, estrogen+ Grade 3 and so had the full works including reconstruction. I am clear I would not be alive still without this treatment and for that am really eternally grateful but we are all different and I think Ive done all I can now and for me it is time to stop. Quality of life is just as important and my oncologist agreed with me on that. Currently my QoL is rubbish. Ive a feeling that if I decide not to go onto tamaxofan in three months time, he wont push me. I stopped four days ago and feel no different.......was told it would take a Couple of months before I start to feel better. Cant wait!!  This is not to say that no one should do the 10yrs but just that to keep reviewing it and take advice from your oncologist. No one knows how long we will live but given a diagnosis of bc just means you become aware of your own mortality. My life has been saved by all the amazing treatment and now my time has come to enjoy it! Just need to recover from having no estrogen in my body for 7rs & get my womans troubles sorted.......and then am off to explore the amazing world out there!! 

JDrumright
Member

Re: Stopping Anastrozole

I agree, for me Anastrozole side effects continued to get worse over time. I took it for about 18 months before deciding to stop due to side effects and leaning about additional health problems it could cause. At only gaining me about 1-2% cancer survival rate and about 20% loss in survival rate due to heart problems I decided a naturopath would probably help me more than the drug, so I elected to stop taking it. 

JDrumright
Member

Re: Stopping Anastrozole

Wow, your side effects sound just like mine, everything other than the joint pain is to the tee! My blood pressure has also greatly increased which I suspect is causing some heart valve problems. My oncologist says that high blood pressure can be caused by many different things and can start at any time in life out of the blue, and he doubts it is from Anastrozole. I find it coincidental that HB started within 3 months of starting Anastrozole. It seems as thought my reoccurrence rate with anastrozole is about 1% and without about 2%, my gut tells me it will cause more health trouble taking it than not. 

Momcat
Member

Re: Stopping Anastrozole

Glad you are feeling better. I know exactly how you were feeling. I reached the breaking point and knew there were only two options, check out or get well on my terms. I feel better day by day, getting the poison out of my system. You roll the dice and take a gamble -- but really we all do that every time we drive down the street, not knowing what wacko might come along. 

Momcat
Member

Re: Stopping Anastrozole

Are you aware that tamoxifen frequently causes uterine cancer. If youve had a hysterectomy,  fine, otherwise no way. One more thing most dont mention

Momcat
Member

Re: Stopping Anastrozole

I have taken anastrozole for eight months. The side effects do not go away, they get worse. My hair was thick, now I'm afraid to brush my hair as it is now quite thin. No amount of lotion helps my skin & nails, skin so terribly dry & brittle nails.  I am so tired,, but cannot sleep since the beginning of taking this drug. Shortness of breath is another major issue and an increasingly persistent couch. Depression, anxiety, waves of nauseous feeling, food seems different, joint pain, sun sensitive, etc, etc. From being very active, almost 71 years old, my quality of life has plummeted to a constant struggle and I'm supposed to take this for five years.  A week ago, I made the decision to enjoy life and regain quality for hopefully 20-30 more years, and stopped taking anastrozole. Unbelievable how, day by day, I am feeling better and better.  Maybe live longer and be miserable- not my choice.  

Momcat
Member

Re: Stopping Anastrozole

I totally agree

Guest user
Not applicable

Re: Stopping Anastrozole

I don’t agree, side effects got worse as time went on, as it would as more estrogen is depleted from the body, it’s not normal how these drugs are affecting other body parts. I have also read on an American site this to be true. Oncologists just dish the pills out, basically going by a textbook.

Staging also now is done by the AJCC the 8th edition, which was released January 2018, some specialists aren’t even up to date on that

Sephie
Member

Re: Stopping Anastrozole

Hi everyone, hi @clalou and @Kitkat23 

I’ve been taking anastrozole for about five months and haven’t had any noticeable side effects so far.  I’ve had two or three different brands.  My nurse said most women who get bad side effects get them early on, and in many cases they wear off within months as the body gets used to the medication.  I appreciate we’re all different and some women do suffer, but wanted to let you know my own positive experience (so far at least!) for balance.  Best wishes to all x

Kitkat23
Member

Re: Stopping Anastrozole

Hi E87

Its fine to have your own opinion...but I  don't think you can make a statement about someone else's oncologist without any background or evidence....it is in correct that side effects get worse for everyone...they don't...for many people they improve after a few months...and for others they have relatively few side effects at all....of course you will read about the hard times on here...becausecpeople with no 8ssues are less likely to seek out support on a forum.

I'm sorry you've not had a good time on the medication.

Guest user
Not applicable

Re: Stopping Anastrozole

Hi, yes bone density went down by 10% in 16 months 

Guest user
Not applicable

Re: Stopping Anastrozole

Hi, your oncologist is wrong, the side effects get worse, these drugs should be banned 

Guest user
Not applicable

Re: Stopping Anastrozole

Hi, I took this drug for 16 months, I told my Surgeon I cannot take it any longer it was so debilitating. Affected my shoulder and hip straight up, then lower back, I took some anti inflammatory and that eased it, mental fog, exercise helped at 1st anyway fast forward bones were cracking, clanging, it got to the point I had to take ibuprofen to even exercise or do housework. I had a bone density test before treatment then in January 2022, 18 months later, my density had decreased by 10%, although still just in normal range. My legs would feel like they were being ripped off me in strands, sweating, always hot. This is not normal that these medications are doing this to your whole body. Anyway Surgeon said stop taking them. He was happy if I stopped completely. He then said he’d be writing to my Oncologist and would plant the seed that I go on Tamoxifen. I just made it with the tablets till her appointment day. She said take a month break then start Tamoxifen. Well it’s been 16 days and so far so good, not hot, nothing really except at times dry mouth but I noticed that more if out shopping and I do tend to forget to drink when running around. If it stays like this fine, if they causes me grief I will be not taking anything. I also found an article where by putting in your specific information the percentage of having just surgery and adding the fact hormone therapy added the percentages for 5, 10, and 15 years were exactly the same. 
I believe Drs push drugs, I also watched a webcast with guest speakers from Australia and Boston USA who both stated they have learned over treating is not necessary. My opinion these drugs should be banned, you simply cannot live with those side effects and absolutely no quality of life. I’ve done some research and found yes it’s all about money!

Jammin
Member

Re: Stopping Anastrozole

I agree also that doctors push pills that sometimes are not necessary.  I only took  anastrazole for 9 days and I have never been so sick in my entire life.  For only taking 9 pills, I was sick for one month. I'm talking unable to eat or drink, having to go to my regular doctor to get hydrated because I was so bad, etc. When I finally realized the pill was doing this,  I was quite angry because the doctor never told me the horrific side effects that could happen. Several weeks later my hair started falling out! I have long, thick hair and I've lost over 50% of the thickness of my hair, it's not thick now.  This also is common.  I don't see how something that can make you so ill for so long is good for you.  My cancer was very small and had not spread anywhere. I had radiation and and after I told my surgeon about the side effects of the pill she she felt pretty confident that I didn't need to worry about it because I did have radiation which was a plus. I won't take another pill, I've been told that a good diet, some exercise, decent sleep can make a big difference.  I don't know what to tell you, it's a personal choice but you might talk to another doctor, not the oncologist, to get an opinion.  I did some research and found out the percentage  of cancer recurring without taking the pill is not that much more. That may differ with the severity but it is worth checking into. I wish you the best of luck.

clalou
Member

Re: Stopping Anastrozole

Hi Jackie 60

I am wondering how you have got on with anastrazole following your post?

I have just been prescribed this but am terrified of even taking the first pill.

I don’t like to take pharmaceutical drugs unless absolutely necessary - and my fear (after much research) is that if I start this drug, before very long I will be on any number of additional meds to combat all the side effects. 

My current inclination is not to take it - I had 3 Tumor’s in one breast - all grade 1 and had mastectomy and IBR - no chemo and no radio. Sentinel nodes were all clear. Following my mastectomy I have a seroma - my BC surgeon prescribed 4x the standard dose antibiotic as a ‘pre-caution’ - the dose was so high the pharmacist queried it with the surgeon.  I found this alarming so decided not to take any until I had the blood test results. Which confirmed no infection present so I didn’t take them.
It seems to me they are a bit too keen generally to push drugs without consideration of individual circumstances…

I just don’t know what to do.

I have struggled to find anyone taking this drug without issue or with an overall positive outcome - are there any good news stories out there for this drug?

My hopes and best wishes to you all for a long and painless future xxx

FrauCassidy
Member

Re: Stopping Anastrozole

@Kaz17 I sent you a PM 

Kaz17
Member

Re: Stopping Anastrozole

Hello

this forum is great, we can read about other experiences and thoughts and put our own into the mix. It did help me make my mind up for my own decision. 
I have decided that I will continue and complete my five year course of Anastrozol. Yes, the side affects are awful in so many ways but after a lot of thought, the bottom line is that I don’t want a second diagnosis of cancer. And as this medication is found to reduce that happening then I’m going to persevere. 
I had a long talk with my doctor. I told her I was feeling depressed and anxious, as well as suffering all the physical side affects, so she put me on a course of antidepressants to help me. 
we all react to our situations in different ways, and we do what’s best for ourselves. I’m settling into my 5 year plan now… good luck

cf1336
Member

Re: Stopping Anastrozole

hi.

i did stop ! and 2 years later i have two kids.

one is a year and 3 months and the other one is 2 months. so far im 2 and a half years in remission ! so i guess its a positive story so far! but there isnt a day that goes by that i dont worry - should i nake the sacrifice for my kids. my oncologist says the symptoms are only severe in the beginning and it gets easier. i am considering going on it after the next olympics. 

FrauCassidy
Member

Re: Stopping Anastrozole

Hi Jacey, I am new to the group and browsing the threads and saw yours. Did you stop and how are things now? I have the same question you asked with same intro.

Thanks 

Kaz17
Member

Re: Stopping Anastrozole

Hi Kitkat

thank you for your thoughts. I think we’re between a rock and a hard place. I’m now thinking that although my quality of life is much less than it was pre Anastrozol, it’s something that I’m going to have endure. I don’t want to stop taking it before the full 5 years of treatment, it’s what is advised. I’m not risking that. I don’t want a second diagnosis. Good luck to you too x 

Kitkat23
Member

Re: Stopping Anastrozole

Hi Kaz 

Its not easy is it.....I take letrozole....my tumour  was ER+ 7/8 .....so I will definitely carry on taking......I am not risk averse ....I have bad health anxiety...for me the stress of not taking it and worrying about secondaries would outweigh any benefits to loss of the side effects ....but we are all different .....and therefore will make different choices....I am also always mindful that cancer cells do not always spread by the lymph nodes...but also ( undetected) by the blood ....so this is always a worry to me too....but this is me...not you....talk it through with your team....good luck 

Kaz17
Member

Re: Stopping Anastrozole

Hi Jacey,  I totally agree, have you found anyone that has answered your question?

I can relate to all those points you listed. Luckily, when I had my surgery they found that all my lymph nodes were cancer free. So then why do I have to take anastrasol for five years to ‘make sure’ it won’t return, and suffer all the awful side effects of the drug?

I see that your post is now 5 years old. How are you doing now please? I had my surgery in October 2020.

best wishes to you

tappin
Member

Re: Stopping Anastrozole

Where do you find an alternative therapist? I live in Bucks, and would prefer to look at alternatives to Letrozole. (Another version of Anastrozole?) An help would be great!

 

MellyL
Member

Re: Stopping Anastrozole

Hi Arla
I have taken Calcium since my journey with endocrine therapy started. Even after stopping Anastrozole after 10 months, switching to 3 years Tamoxifen, I still take it. Have stopped all hormone pills now and have teeth problems even with the Calcium. Latest is high fluoride toothpaste! The journey continues..

Not sure that helps! Good luck

 

Arla0416
Member

Re: Stopping Anastrozole

Are you having to take a bone loss medication when on these drugs?  I am not wanting to take any more meds and thinking about stopping Anastrozole.  The Anastrozole is what ruin my bones and I am perplexed as to what to do now.

Sweetpolly
Member

Re: Stopping Anastrozole

I was on and off the aromatase inhibitors for 1 1/2 years. They did not work for me. They had too many side effects.  I have friends who tolerate them well, but for me I was miserable. I am now on tamoxifen and I am 1 year in. Again with tamoxifen I could not tolerate the full dosage, so I am on a half dose. Something is better than nothing. I also, take a capsule of turkey tail mushroom which helps to support the immune system. I agree every person needs to research and decide what option is best for them. Prayers up to all my cancer warriors! 

Alys M.
Member

Re: Stopping Anastrozole

Hi Jammin, my docs didn't tell me either. The Anastrozole did just the opposite....ask a nurse, not a doc. My body MADE hormones.....it was fine for 5 yrs before taking it. If someone has great luck on it, fantastic. However, EVERYONE/EVERYBODY DOES NOT react/respond the same way. Make yourself aware of the side effects of this drug and make sure your doctor is aware also. Pharmacists (most) are aware, doctors are not. Nurses appear to me to have more knowledge of this drug and how the boy reacts. Good luck and remember to breathe!

Jammin
Member

Re: Stopping Anastrozole

I'm so sorry for all your going through. I took anastrazole for only 9 days and I was so sick!!! I've been off it 3 weeks and I'm finally better but still have nausea and tired. This pill is dangerous. I had tons of side effects and lost 6 lbs in 8 days. I won't ever take another pill. Too much to mention but those doctors need to tell us how bad the side effects can be. Mine sure didn't. Prayers for you!

Sweetpolly
Member

Re: Stopping Anastrozole

I had Stage 2 ER+ and had radiation with Aromasin and other aromatase inhibitors that did not work. I am now on tamoxifen, 1 year in 4 yrs to go. I know aromatase  inhibitors work as I have several friends who are doing well on them. Prayers up for you🙏🏼🙏🏼 And healing. 

Alys M.
Member

Re: Stopping Anastrozole

I am so sorry that all of you are going through the problems with Anastrozole. I was diagnosed with stage 4 leiomyosarcoma Nov. 2016. No chemo or radiation. Started taking RSO as so many friends had already passed from cancer after doing chemo and radiation. My cancer did come back after losing all in the Camp fire of 11/08/2018. My doc had me start Anastrozole and I managed for only 2 weeks. Still having some of those problems after months off of it. Not sleeping, severe pain in hands and arms, hips and legs, nausea, swelling and pain in breasts and abdomen. It didn't stop the hormones as stated. My body created estrogen and I felt like I was about to start my worst period ever.....and I'm 71 years old. Pathetic. I couldn't handle it, my body said NO WAY. That was in May of .  It takes months to get this out of our system. The doctors can't tell you it will be out in days....actually, they will tell you that, but, it doesn't.  The doctors aren't pharmacists and they don't know all the ins and outs of the drugs.  You have to take responsibility and research it out yourself.  This is cancer, it's up to us to find out all we can about it and our options and then chose what's right for us. We CAN get through this......just, catch your breath and breathe.....am sending you all hugs, positive thoughts and prayers.💖💝

Kitkat23
Member

Re: Stopping Anastrozole

Hi Sue

Hope someone is able to answer your question.

just wanted to ask if your second BC was also ER+ and if so how many out of 8? Thanks if you are able to respond.

i have had primary BC 3 times.....All each time ER+ ....first time 3/8 ....as it was DCIS low grade no hormones prescribed.... 2nd time 4/8 and prescribed tamoxifen....2 years later 3rd diagnosis 7/8 ER+ .... this time I have been prescribed letrozole for 10 years..... so I am hoping for better results on it than tamoxifen ..... I am 1 year in .....9 to go! 
Hope all goes well for you

SueP
Member

Re: Stopping Anastrozole

Hi!

I had completed 5 years of Letrozole then got breast cancer again 2 years later - in same spot 😞  I have now completed 5 years of Anastrozole. I'm wondering what the long term effects of being on this drug will be and if there ae any withdrawal symptoms.  I haven't been on this site in quite some time.

Thanks in advance.

 

Sarnau
Member

Re: Stopping Anastrozole

Thankfully this isn’t one of the side effects I’ve suffered so I can’t offer any suggestions. However I can let you know you’re supported and send a big hug. Good luck 

Braindoc
Member

Re: Stopping Anastrozole

I had the same problem.  In retrospect, I had developed diabetes from the anastrazole. This occurs in about 2.5% of patients (per Epocrates).  Diabetes causes you to urinate more, as the body tries to lower the glucose in your blood.  This leaves your body lower in fluid, causing the constipation.  I finally figured it out after wearing a glucose monitor.  The difference MIGHT show on a fasting glucose test.  It would take much longer to be reflected in the Hemoglobin A1c that is usually the test that doctors use to detect elevated blood sugar.  I send you God’s blessings to help you and your medical team figure this out.

Jammin
Member

Re: Stopping Anastrozole

I took  Anastrazole for about 2 weeks,  After the 2nd day of taking a pill I started getting horribly sick. I didn't connect it with the pill right away. I went to my doctor because I was dehydrated and he gave me 2 l of I v's. When I called my oncologist he told me to stop taking it for 2 weeks. I had many symptoms but what is still lingering is the nausea. I'm eating small amounts of  food but my stomach's just not good . I called the oncologist and the pharmacist to see to see if it took this long to get it out of my system. Online it says 6 to 12 days but they said they've never heard of nausea lasting this long so I'm making an appointment tomorrow with my regular doc. Has anyone experienced this besides me because I am miserable.

Jackie60
Member

Re: Stopping Anastrozole

Thanks to everyone on this post, your comments are helpful. I'm giving Anastrozole another go now that I'm a bit more prepared for the side effects and I only gave it 3 weeks before. Some people have said that the body adjusts and gets used to it but you have to give it a few months. I'll see how it goes. X

Sweetpolly
Member

Re: Stopping Anastrozole

That was my last choice too. I can only take 10 mg daily of tamoxifen. 1 full year down. Find out what works best for you. 

MellyL
Member

Re: Stopping Anastrozole

 I have a similar problem with severe pain and weakness in both hands at 63 due to joint damage after anastrazole. 

Hip arthritis too. Currently weaning myself off everything. Had Stage 2 with 4 nodes. Decided 3 years of these tablets will do for me

a very personal decision, but good luck to you.

Sweetpolly
Member

Re: Stopping Anastrozole

I tried  and did not do well on this drug. Last drug that I could take was Tamoxifen. 10mg daily. I tried 20mg and the side effects were too bad! I stayed on 10mg which was good for me.  

RIgirl
Member

Re: Stopping Anastrozole

This whole stream has been really helpful to me. I was diagnosed at 60 with stage 1 BC. After surgery 9/20, and radiation I started on anastrozole in January. By May, i Already started showing signs of osteoporosis. This May surgery was a repeat of one last June to reattach two muscles to left hip.  My dr said my hip bone was already soft which compromised his ability to properly anchor the muscles back in place. When I had a rod placed in my back in 2018 the surgeon said my bones were really hard as they still were last June fir first hip surgery  

has anyone else also experienced bone density issues?  
I need to talk to my oncologist but I’m pretty sure I am stopping the drug. Sleeping is an issue as are the hot flashes. The % of recurrence is low and I’m willing to live with that. I already have skeletal issues…I don’t need osteoporosis to make it worse.  Not at 61!

Guest user
Not applicable

Re: Stopping Anastrozole

Those mammograms are dreaful - as one nurse said to me 'they are not designed to be kind to large breasted ladies'😁

Poppy xx

Sarnau
Member

Re: Stopping Anastrozole

Hi lovely ladies. I posted on here back in September 2020 because I was struggling - it’s amazing now to see how many others go through similar experiences. 
I’ve been lucky in that moving to Tamoxifen has made a real difference - carpal tunnel has pretty much gone and I now only have trigger finger in my ring finger. I remember thinking it would never improve but over time it did. If you’re just starting out on this journey I hope it might help to know that things can change. Different things suit different people so it really is worth swapping tablets if what you’re on is actually making a difficult time even harder. What an incredible group of women you/we are. Thank you for being there.

 

Jackie60
Member

Re: Stopping Anastrozole

Hi @nanaz 

It's really interesting to hear thoughts from someone with a similar scenario to myself. My cancer was small and contained, likely age related. I did try Tamoxifen after the Anastrozole but the low mood was just as bad, it was like a turned into a completely different person and I'm afraid not very nice to live with. I stopped taking it and now I'm back to myself. I have the greatest admiration for the other ladies who are in a more serious situation and just plow through and get on with it. I think you are all very brave. Xx

nanaz
Member

Re: Stopping Anastrozole

In my case, doc said with anastrazole, it's 4% risk of coming back. Without it 10%. It was so bad for me depression wise, we decided to do without it. Good luck to you. 

PS I took it. Then stopped to give it a rest. When I took it again, it was the same. I tried but not worth it for me.

nanaz
Member

Re: Stopping Anastrozole

I did the same. After discussion with doc we agreed that was an informed decision. For 2 months I was virtually incapacitated from being SAD, depressed, despondent. Also said that if that one did it to me, chances are all the other ones would as well since they block estrogen.

I was blessed with a cancer that was very small, non-invasive, more due to age. I, too, would rather go through that all scenario. Everyone was wonderful. No procedure ever caused any pain (except those darn mammograms - lol). 

Had this been a more sever cancer, my decision might have been different. Good luck to you