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I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by ChildofGod1 on Jun 24, 2020 12:18 pm

I was diagnosed with IDC breast cancer on right side, stage 1 with grade 2 Lymph Vascular Invasive with clear lymph nodes and clear margins with no ink stains.  ER=/PR+ Awaiting my onco type Dx score.
I was wondering why do i really need Radiation when all is clear...Has anyone passed on radiation in this circumstance.  I am also now on Anastrozole for estrogen blocking and boy  are they unpleasant with many side effects. Have been on them for only 16 days and i am having a hard time coping.  Please let me know your experiences and whether anyone has not done radiation and the results and what side effects are you having on estrogen blocker pills.  I am post menopausal 64 yrs old

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Runner Girl on Jun 24, 2020 12:36 pm

Hello ChildofGod1‍ ,

Even though all 3 of my tumors were removed and my lymph nodes were clear radiation was part of my treatment plan.  It was to "clean up" anything that might be left behind.  I was 52 when diagnosed with IDC, ER+, PR- and HER2+.  I did 6 rounds of chemo.  The 16 rounds of whole breast and 5 rounds of boost radiation were a piece of cake after getting thru chemo.  My skin did redden, but did not break or blister.  11 days after my last radiation treatment I turned the corner and my skin began to heal.  I, personally, feel more confident that my cancer has been killed having had all of my treatments.  Not to mention, my radiation doctor was really awesome!!!  I am on tamoxifen, to be switched to anastrozole later this year.

I'm not trying to encourage you to have radiation, just giving you my perspective.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by KerriKerri on Jun 25, 2020 8:28 am

I  am passing on the hormone treatment preferring to go dietary instead and decided to have minimal radiation (5) despite my doctor wanting 15. My acceptance of the five is based on this analogy. 
When you weed a garden, you take out the main plant, roots and all, but you also leave little root fibres behind and these later begin to grow again. So, based on that theory, it seems logical to have a little insurance, especially since I am forgoing the hormone treatments. On that logic (mine) 'some' radiation is a logical measure.
However, I have more difficulty with the massive amounts of radiation, I liken it to taking a flamethrower to the garden in order to get the last of the weeds; you end up destroying a lot more than the weed.
Please remember, this is MY logic, not the doctors. They wanted the whole nine yards of hormones and radiation. But I did a tremendous amount of research, talked to many, many people who gave me a multitude of perspectives about the pros and cons. I went into medical journals, not just 'pop' medicine sites.
My 'face to face' discussion with the doctor and his intern took well over an hour and a half. We settled on a schedule of three radiations with the other 2  to follow. I am comfortable with my final choices. Note: I had the Hospital Social Worker with me.
Part of my choice is based on my age, (almost 74) but the main factor is the side effects exacerbating my physical issues that I have already, most due from 4 decades of banging myself up in the pursuit of living life on my terms.  I have stories to tell and the aching body to prove they are true.
I have also discussed at length with close friends whose counsel I trust, and with my son and POA and his family, including my granddaughter, who calls me her "badass grandma".
Think very carefully. There are no guarantees either way; stories in here are testament to that. Do your groundwork. Listen to all sides. make your decision from a position of relative strength, not fear or from pressure. You control your life as long as you realize that some things you cannot control, you can only mitigate.

I should add that in the beginning I was positive to not do any follow up but my research brought me to the 5 treatments. The more informed you are, the better the decision.
 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by ChildofGod1 on Jun 25, 2020 5:57 pm

Runner Girl:
Hello ChildofGod1‍ ,

Even though all 3 of my tumors were removed and my lymph nodes were clear radiation was part of my treatment plan.  It was to "clean up" anything that might be left behind.  I was 52 when diagnosed with IDC, ER+, PR- and HER2+.  I did 6 rounds of chemo.  The 16 rounds of whole breast and 5 rounds of boost radiation were a piece of cake after getting thru chemo.  My skin did redden, but did not break or blister.  11 days after my last radiation treatment I turned the corner and my skin began to heal.  I, personally, feel more confident that my cancer has been killed having had all of my treatments.  Not to mention, my radiation doctor was really awesome!!!  I am on tamoxifen, to be switched to anastrozole later this year.

I'm not trying to encourage you to have radiation, just giving you my perspective.

Runner Girl

Hi Runner Girl‍ , thank you so much for your information.  I have heard that chemo is way worse than radiation and am sorry you had to go through all that but am very happy that you are now doing better.  I am on anastrozole right now and the side affects are not pleasant at all.  I am wondering how i will handle both radiation side effects and anastrozole side effects at the same time...  I was told by my oncologist that the anastrozole would kill any cancer cells in my blood while blocking the cells from dividing also, so why do i need radiation to do the same thing that the anastrozole are doing.  so confusing.  I will keep praying for a clear answer. 

ChildofGod :)

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Runner Girl on Jun 25, 2020 7:14 pm

Hi ChildofGod1‍ ,

Below is some information and links that may help you to make your decision.

How Anastrozole Works:

Hormones are chemical substances that are produced by glands in the body, which enter the bloodstream and can cause effects in other parts of the body. For example, the hormone testosterone is made in the testicles and is responsible for male characteristics such as deepening voice and increased body hair. The use of hormone therapy to treat cancer is based on the observation that cancer cell growth can partially depend on hormone binding to receptors on the cancer cell surface.

Hormone therapies can work through methods such as stopping the production of a certain hormone or interfering with hormone binding to the cancer cell receptor. The different types of hormone therapies are categorized by their function and/or the type of hormone that is affected.

Anastrozole is an aromatase inhibitor. This means it blocks the enzyme aromatase (found in the body's muscle, skin, breast and fat), which is used to convert androgens (hormones produced by the adrenal glands) into estrogens. Tumor cells dependent on estrogens grow less when there is no estrogen.

Here is the link to the full Anastrozole information: http://chemocare.com/chemotherapy/drug-info/anastrozole.aspx

Here is a link to the Cancer Society information on breast cancer radiation:  https://www.cancer.ca/en/cancer-information/cancer-type/breast/treatment/radiation-therapy/?region=on


I wish you all the best in your deliberations.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by ChildofGod1 on Jun 25, 2020 9:05 pm

KerriKerri:
I  am passing on the hormone treatment preferring to go dietary instead and decided to have minimal radiation (5) despite my doctor wanting 15. My acceptance of the five is based on this analogy. 
When you weed a garden, you take out the main plant, roots and all, but you also leave little root fibres behind and these later begin to grow again. So, based on that theory, it seems logical to have a little insurance, especially since I am forgoing the hormone treatments. On that logic (mine) 'some' radiation is a logical measure.
However, I have more difficulty with the massive amounts of radiation, I liken it to taking a flamethrower to the garden in order to get the last of the weeds; you end up destroying a lot more than the weed.
Please remember, this is MY logic, not the doctors. They wanted the whole nine yards of hormones and radiation. But I did a tremendous amount of research, talked to many, many people who gave me a multitude of perspectives about the pros and cons. I went into medical journals, not just 'pop' medicine sites.
My 'face to face' discussion with the doctor and his intern took well over an hour and a half. We settled on a schedule of three radiations with the other 2  to follow. I am comfortable with my final choices. Note: I had the Hospital Social Worker with me.
Part of my choice is based on my age, (almost 74) but the main factor is the side effects exacerbating my physical issues that I have already, most due from 4 decades of banging myself up in the pursuit of living life on my terms.  I have stories to tell and the aching body to prove they are true.
I have also discussed at length with close friends whose counsel I trust, and with my son and POA and his family, including my granddaughter, who calls me her "badass grandma".
Think very carefully. There are no guarantees either way; stories in here are testament to that. Do your groundwork. Listen to all sides. make your decision from a position of relative strength, not fear or from pressure. You control your life as long as you realize that some things you cannot control, you can only mitigate.

I should add that in the beginning I was positive to not do any follow up but my research brought me to the 5 treatments. The more informed you are, the better the decision.

Thank you KerriKerri  for letting me know this.  I am to have 5 radiation treatments which are scheduled once a week for 5 weeks where i will be given the
full weeks dose in one shot each week.  Can you tell me what grade your cancer was...if mine was grade 1 i wouldnt do radiation, but seeing as it is grade 2 and a bit faster growing  is what makes my decision harder.  
I understand you theory about getting just some radiation which in enough to kill what needs to be killed but not so much that it causes many other side effects and kills unnecessarily the good cells in our body.   So  can you tell me if you are just getting 5 treatments as in one a day for 5 days?  I asked my rad oncologist about this and said why can i not get just a few weeks of daily or 2 or 3 weeks of one shot per week, because in the beginning she did say i only needed 16 daily doses but said if i do the once a week i will need to do 5 weeks.    the rad dr did say that i need the full dose for it to actually work fully.     
I personally would like to do the diet of no sugar and better eating etc than taking the pills...
Seeing that i have 2 oncologists, one for the radiation and 1 for my anastrozole its hard to get all the info i need from them...they should both be in the same room at the same time which would be a big help.
I thank you for your encouragement and I wish i could make up my mind as i did with chemo...i knew immediately that i would not do chemo.  
I have been thinking long and hard and if i was 70 yrs old instead of 64 they told me i wouldnt really need to do radiation.  I really want quality of life and not
have to suffer along with all these side effects from both treatments.  
Lots of love and light and admiration for making your decision and sticking to it.  :)
 

 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by ChildofGod1 on Jun 25, 2020 9:11 pm

Runner Girl:
Hi ChildofGod1‍ ,

Below is some information and links that may help you to make your decision.

How Anastrozole Works:

Hormones are chemical substances that are produced by glands in the body, which enter the bloodstream and can cause effects in other parts of the body. For example, the hormone testosterone is made in the testicles and is responsible for male characteristics such as deepening voice and increased body hair. The use of hormone therapy to treat cancer is based on the observation that cancer cell growth can partially depend on hormone binding to receptors on the cancer cell surface.

Hormone therapies can work through methods such as stopping the production of a certain hormone or interfering with hormone binding to the cancer cell receptor. The different types of hormone therapies are categorized by their function and/or the type of hormone that is affected.

Anastrozole is an aromatase inhibitor. This means it blocks the enzyme aromatase (found in the body's muscle, skin, breast and fat), which is used to convert androgens (hormones produced by the adrenal glands) into estrogens. Tumor cells dependent on estrogens grow less when there is no estrogen.

Here is the link to the full Anastrozole information: http://chemocare.com/chemotherapy/drug-info/anastrozole.aspx

Here is a link to the Cancer Society information on breast cancer radiation:  https://www.cancer.ca/en/cancer-information/cancer-type/breast/treatment/radiation-therapy/?region=on


I wish you all the best in your deliberations.

Runner Girl


Thank you Runner Girl for taking the time to send me the information and links to check them out.  they were very helpful and informative.  :) 
I am going to find out if i can have fewer rad treatments and also to hear back about my oncotype score which may help me with my decisions. 

Child of  God

 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Bgirl on Jun 26, 2020 7:29 am

Different treatments are usually recommended depending upon your diagnosis. Some are meant to treat the current cancer and some to try and prevent metastatic disease or local/regional recurrence. 
Surgery removes the gross tumour. The radiation helps to prevent another cancer from growing in the breast when mastectomy isn't the choice. It can also be used to treat lymph nodes and the chest wall in higher stages of BC. Hormone therapy is to stop your body from feeding any cancer cells. Chemo helps kill off stray cells. There are also targated treatments for specific types of BC.
The treatment choices are very personal. It may depend upon your age or other health factors. That said, I have had 50 rounds in total First at 46 and again at 53. It is very doable. As always, find out what your choices are. What happens if I do or don't. Only you can decide what you can live with. 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Wendy Tea on Jun 26, 2020 9:15 am

Bgirl‍  Well said! That's exactly what I wanted to say but couldn't formulate my thoughts. Well done!
Healing takes time and opportunity. Wendy Tea

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by KerriKerri on Jun 26, 2020 9:16 am

ChildofGod1‍ 
At this point, I don't know the schedule of treatments. Since they are paying for the rides and I have a pretty clear schedule, as long as they call me before midnight, I can be ready for anytime next morning. My part of the deal, as far as I'm concerned, is to be available entirely at their convenience.

My lump was 3.2 which is bigger than they like for 5 treatments. But, the lump had been there for a long time. it is not aggressive, which is my good fortune.

Understand that I am playing the odds. From what I have seen, the odds are pretty high that cancer is somewhere else in my body and is just undetected. I can't count the times that I've seen people go through the rigours of treatment only to discover cancer somewhere else and have to start all over again. Again, my personal bias. 

But I work on the "If it ain't broke, don't fix it." philosophy. It has generally done me very well in life. I tend to try to be dispassionate and logical in my approaches, sometimes I even succeed. ;) That's because I can easily get into a dither , ;) But, I have recovered reasonably well from some pretty heavy body slams before, it's just not for the faint-hearted.

Just don't let fear be  your impetus in your decisions. I'm a big believer in the "The more you know" approach. Just be sure when you research online that you stick to legitimate sources, Stay away from the 'pop' sites. Look to clinical reports, I found the best backup to clinical reports is from people who have gone through treatment. 

Which is of course, why I am here.

You might like to go into journals. some of them go quite far back. Take a look at what people said and felt and how they feel now. That was enlightening.
 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Wendy Tea on Jun 26, 2020 9:39 am

KerriKerri‍  and ChildofGod1‍  I have been watching this interesting thread for quite a while now. I am going to be very succinct.  Yes, research your particular situation. Understand it. Speak intelligently about it. Learn as much as you can. But at the end of the day, do you really think that all of that research and time spent will result in more knowledge about treating your cancer than your medical team has who have spent years getting their education,  spent years seeing thousands of cases, spent years treating cancer patients,  and spent years saving lives? Yes, as a patient,  I was always glad to be given options,  glad to learn the success or failure rate for each choice,  glad to research and learn more. 

KerriKerri‍  I know about being a rebel. I know about going against the grain. I know how important it is to have control. Simply put, I want your treatment to have a successful outcome.  
Healing takes time and opportunity. Wendy Tea

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by KerriKerri on Jun 26, 2020 10:05 am

I appreciate the forthrightness. :)

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by happyhiker1 on Jun 26, 2020 10:45 am

ChildofGod1‍   I totally empathize with your questioning the rad treatment, as I did as well and had hoped to escape it. I am 68, with very similar diagnosis stage 1, grade 2, but since there were 2 smaller lumps (in addition to the main, 2 cm one) and nerve involvement, my oncologist said the rad would be important, but otherwise, since all margins clear, she would not have recommended it.
I finished the 15 sessions almost a month ago and in the end, it has been fairly uneventful, little effect on my skin, just some fatigue that popped up at times.  I was told to hold off the hormone blocker (since effects could be confused with rad effects) until a month after the rad treatments, so am supposed to start soon.  My oncologist (radiologist) emphasized that the rad was particularly important, but implied that the hormone treatment would add only slightly more protection (3% she suggested) and if the side effects were hard to take, she thought I could omit it, but to try it first. I am thinking that the oncotype score should be a good indicator of likelihood of recurrence and since mine was low (10) I think I would feel relatively safe to omit it.  So this is just to add my personal experience, and to let you know that it is totally understandable questioning the need for rad, but personally I am very glad I submitted to it, just to know that extra protection is there.

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Essjay on Jun 26, 2020 11:45 am

KerriKerri‍ I saw things differently...
Radiation was part of 'belt and braces' treatment for me after my tumour was removed. To be sure my cancer was gone.
The way i looked at things was if my cancer came back and I hadn't done everything that was recommended, how would i feel? I decided I would feel responsible, and I would feel terrible for my husband...
So I followed the recommendation of my oncologist...
Triple Negative Breast Cancer survivor since July 2018

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Lianne_adminCCS on Jun 26, 2020 1:39 pm

Hello all

This is a wonderful thread. It is important to understand that we all make our decisions based on many variables and  it is also important that we can discuss these here in a safe,  respectful, non judgemental  environment.. What feels right for me may not feel right for you and visa versa.
So many things can come into play for someone making a decision about treatment that others may not think of or may not have to think of.

For those that may be interested, I wanted to share a couple of links

Making Treatment Decisions
Prognosis and Survival

Lets continue to share openly about our own personal experiences without giving advice or telling people what they "should" or "shouldn't" do. At the end of the day, it just matters that we feel good about the choices we are making for ourselves.

Lianne
 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by KerriKerri on Jun 26, 2020 4:09 pm

Just got a call; I go in on July 6th for my first rad treatment.

I am completely comfortable with it.

In the meantime, I took the bus down to Lens Mill to pick up lots of fabric for chemo caps and matching masks for my 'next door neighbour' to choose from. Her cancer is very different and quite serious so she is going to be needing them.

Sale price material works out to about $2.00 a cap.

 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by ChildofGod1 on Jun 26, 2020 4:56 pm

happyhiker1:
ChildofGod1‍   I totally empathize with your questioning the rad treatment, as I did as well and had hoped to escape it. I am 68, with very similar diagnosis stage 1, grade 2, but since there were 2 smaller lumps (in addition to the main, 2 cm one) and nerve involvement, my oncologist said the rad would be important, but otherwise, since all margins clear, she would not have recommended it.
I finished the 15 sessions almost a month ago and in the end, it has been fairly uneventful, little effect on my skin, just some fatigue that popped up at times.  I was told to hold off the hormone blocker (since effects could be confused with rad effects) until a month after the rad treatments, so am supposed to start soon.  My oncologist (radiologist) emphasized that the rad was particularly important, but implied that the hormone treatment would add only slightly more protection (3% she suggested) and if the side effects were hard to take, she thought I could omit it, but to try it first. I am thinking that the oncotype score should be a good indicator of likelihood of recurrence and since mine was low (10) I think I would feel relatively safe to omit it.  So this is just to add my personal experience, and to let you know that it is totally understandable questioning the need for rad, but personally I am very glad I submitted to it, just to know that extra protection is there.
 

Happykiker...thank you for sharing with me, as we both have similar diagnosis i dont understand why my radiation oncologist would recommend radiation when yours did not,  as i had only the one tumor removed with clear nodes and clear margains...but she said it was because it was grade 2  as with you??? if it was grade 1 then probably not...so this is confusing really.  and i was told anastrozole would be 10% protection which i found interesting as each dr seems to have their own percentage...yours 3% others, 5% 7%-10  so i can tell you if it only helps at a 3% it is not worth the horrible side effects i am going thru and to do it for 5 yrs...if they told me do radiation and u wont need the pills then i would do it.
but to have to do both and they want me to do radiation while on the pills also...how am i to know the difference when more side effects arise whether they are from the pills or radiation.  hmm  and i also read that it is feasable to do the pills every other day with pretty close to the same outcome. so much to think about.
when i do get my results from oncotype it will certainly help me to make a decision at least about taking the pills.  i would rather have my quality of life over suffering from side affects continually.  
:) child of god
 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by KerriKerri on Jun 27, 2020 9:00 am

The numbers the doctor gave me were 3% with hormones, 10% without. On that basis I said no. I am looking into holistic measures though which should be less brutal. The rad numbers were not quite so favourable, 5% and25% so I am taking the 5 treatments

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by ChildofGod1 on Jun 30, 2020 12:17 pm

KerriKerri‍ ...thank you very much for this information...if the protection is only 3% with and 10% without...i do believe that i will think long and hard
about this information...and do a lot of praying, as I do not feel like me at all taking the AI meds..  I am mixed at the moment as i do believe quality is
important too vs quantity with a ton of side effects.  I also am going to talk about my rad treatments and seeing if i can do less and still have a good outcome.
   If you do not mind if you come up with some good holistic advice and what to take can you please let me know...I am very interested.

ChildofGod :)
 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by KerriKerri on Jun 30, 2020 6:04 pm

ChildofGod1‍  I'm not an holistic healer, so take anything I say with a grain of salt. Anything I do say is obviously filtered through my own lense but I will try to be as objective as possible.
Firstly, the % I cited are what came back from one of those very expensive tests for which they send away to California for the results so therefore, they apply to me and not necessarily for anyone else, This  was with and without hormones; report also suggested chemo was not recommended.
The % on radiation were from my doctor and that was for ideal conditions of the cancer and 15 treatments.  He eventually said 5, then went back to 15; I am holding him to the 5. 
Don't turn down treatment because you see me doing it and figure, well, isn't she so I won't. Your situation is your situation and is quite independent from mine. 
As for the holistic alternatives, I will be doing a journal discussion of what I am contemplating and why. Hopefully it will be up before I go to bed tonight.
Up until the last interaction with the doctors, they had not met me face to face. Once they met me, spoke with me and saw the mobility issues which I deal each and every day, they could see better where I was coming from. I think we have established detante; if something changes I will be open to if not automatically for, any changes.
It's a balancing act and only you decide.
 

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by Essjay on Jun 30, 2020 7:27 pm

ChildofGod1‍ please do not take the percentages KerriKerri‍ mentions to be relevant to you. We all have our own particular set of circumstances and likely the models give us different risks and benefits. Your oncologist is the best guide to the benefits of the suggested treatment, and they welcome a robust discussion and for patients to be engaged in their treatment as you are.

One factor you may need to consider. When my sick leave ended I went on long term disability provided through my workplace insurance. To qualify for that I needed to have agreed to take all the recommended treatment. 

Good luck making your decisions and with your treatment. Essjay

 
Triple Negative Breast Cancer survivor since July 2018

Re: I am having a hard time deciding if i should do Radiation/Has anyone passed on radiation?

Posted by KerriKerri on Jun 30, 2020 8:47 pm

ChildofGod1‍  @Essjay makes valid points. It's something to consider very carefully. My case is not your case.