Radiation only, no chemo

Boy Sully7700, you hit the nail on the head with your comment: Almost as though we have not suffered enough to be part of the group.

These are the feelings that I've been having.  I actually sat down with the social worker at my clinic to discuss it.  I was feeling very overwhelmed with everything.  I'm having pain and itching at the rad site, but feel I shouldn't even mention it because I'm so fortunate to not have chemo.  It's like I'm just being a big baby.  I finally said it out loud: I want credit for having cancer.  It sounded so juvenile coming out of my mouth, but those are my feelings.  I don't want people to fawn over me and all that.  I never wanted that.  But I want some recognition by friends and family that I'm battling something pretty big.  It's nice to know that I'm not completely alone in my feelings.   I have 11 more rads to go, 6 regular and 5 boosts.  Then I start Tamox.  I'm concerned about it but I trust the doctors and will take it.  I am already large so I worry about the weight gain, but again it beats cancer recurrence so I'm going to do it. 

Thank you all for sharing your honesty on this thread.  I can't tell you what it's meant to me to find it. 
Jenn

I too am ILC 1.6 cm. grade 2. I have three more boosts to go and I'll be done with rads. The main SE for me has been the rash and itching but they are manageable. I am more anxious about the aromatase inhibitor that comes next. I am 64 so no issues with early menopause but I do worry about arthritis, bone density and weight gain. My onco score gives me a 9% chance of recurrence with the AI and 18% w/out. I guess I'll give the AI a shot but I am more worried about that than I was about surgery and rads. I try not to think about recurrence but it is always in the back of my mind. I am lymph node negative but I did have a few isolated cells and that worries me despite the reassurances of the docs. I think there will be a period after rads is done when I'll actually miss my weekly meetings with the docs. I like having them keeping a watchful eye.

Hi Joanne 53 & other lumpies

Just received report that margins&nodes are clear yeah! Wire localization is ugh...

How long before rads begin? Anything recommended to prepare skin, clothing, mindset. 6 wks rads & then tamoxifen. 1 step at a time. I'm grateful that medicine has so many more options today.

WE ARE ALl BRAVE!

This journey is not for the faint of heart & each of us brings something to the victory against c today & tomorrow.

Joanne - thank you for starting this thread.  You voiced what so many of us in similar situations are feeling.  My ex-husband actually said to me "well, you are not having chemo now, just radiation, that's a cake walk, you don't need my support".  I have 94% custody of two young children and I need child-care support sometimes! I am also only 44.

I think there are 3 elements to all of this - the physical effects of different treatments, the emotional / psychological effects and the practical day-to-day things.  Not having chemo is a highly personal decision hopefully based on really solid science.  My decision to not have chemo was based on an Oncotype score of 14 for a Stage II well-defined 1.1cm tumour that had not spread to lymph nodes.  The extra "gain" in 15 year longevity looks to be around 2.5% from chemo so my Oncologist recommended against it.  I have only sat on this news for 24 hours and part of me feels terrified not to have chemo.  I can have it if I want it but the math doesn't add up against the potential side effects.  There is no magic bullet or cure I guess.  The hard thing to accept is we have breast cancer, it may come back and you do not get "cured" as such.

I don't think anyone who has not been through this has the right to judge our choices or reaction harshly.  The psychological distress from the initial diagnosis and associated tests, from scarring surgery, from taking serious hormone medication and from daily radiation for 6 weeks and fear of it spreading in the future are all horrendously hard to cope with.  Having chemo does not further "legitimise" having breast cancer, it is a very hard and toxic treatment option that some of us have to or choose to have or I will always 100% respect that decision and the necessity for it.  I know those in this thread are grateful to not have to undergo this treatment option now but no guilt should be attached to that whatsover.  You make a decision based on good medical advice and then we have to live with that decision.  There is no magical crystal ball and we do the best we can in the here and now.  

I start Radiation 18.2.13 and I am nervous.  I am nervous about taking Tamoxifen and I am nervous that the cancer has spread and micro-cells are hiding somewhere in my body.  I think being nervous is kind of normal and OK.  

Good luck everyone and be super kind to yourselves.

Thank you Sam44 & Joanne53 for your honesty.

Each cancer is different my BC is not your BC and we excel muddle shine falter and grow with each step; we move forward. My DH's bladder cancer & neo-bladder comes with its own set of challenges.

I'm learning to be Thankful for the blessing of today.

I only want to do this journey once and I do not need to rehearse tomorrows possibilities or the next months and lose today's blessings consumed with worries. I do need to be informed and prepared so I am able to make good decisions today.

Yes, we need to be kind to ourselves (((hugs)))

I have BC and I'm a survivor! We are survivors!

Hi Joann 53....I left these boards awhile back and deleted all my posts because of the very reason you have started this thread. I was the former doxielover, from GA with the purple Christmas tree. I went through so many anxious weeks waiting for my doctors to get a treatment plan in place. I would read these boards and second guess every step of my journey. I started out with a small tumor, that turned into 1.9 cm IDC and 4 cm DCIS, both grade 3, but no lymph node involvement. Then the wait (long) for surgeon followup...I worried should I have had a MX instead of lumpectomy. Then the long wait again, 1 month, for the oncotype which of course was borderline 19. The MO did not have any doubts that I did not need chemo. He felt that Arimidex would be my best friend. Then I go to the RO, and bingo, I get off with 16 day rad treatment. I asked him if this was going to be my best attack against a grade 3. He said, Jenifer, we make more money by prescribing chemo and longer rad treatments. If we thought this would not be the best course for you, we would have given you the other option. So at that point, I decided to put my health in his hands and go forward. I had no radiation fatigue, very little discoloration (all gone now), and have NO side effects from arimidex. I finished my treatments on Dec. 31, 2012. The RO even let me have 2 treatments one day (6 hours apart) so that I could get all of the treatments under the 2012 deductible. Really nice man; I was at a loss when the treatments were over. On a positive note, I have lost 30 pounds and have a better outlook on life. So I have rejoined the discussion boards only to let you know that you are not alone. Oh by the way I turn 60 this year. I still hate the color pink, and refuse to wear it. Purple is my color.

Hello all,

It's great to see this thread come alive a bit.  I felt such a kinship with you all. 

Momof2doxie: I am so glad you had such a great RO who was honest with you and did what was in your best interest.  All of them should be like this.  I'm glad you're doing so well post treatment!  WOO HOOO!

As for me, today is my last day of RAD!  I can't begin to tell you all how happy I am!  I'm having some pretty severe skin breakdown now and I'm having a hard time sleeping.  I will be thrilled when things start to heal up.  My entire breast is nearly purple, as well as up under my arm.  But I'm still feeling positive and I'm still so thankful that I didn't have to have chemo, so I just grin and bear it.  My family and friends are throwing me a party today right after my last treatment!  I hated pink in the beginning.  An October DX of BC is awful because it's everwhere and you can't get away from the reminders.  Still, I understand that awareness is important so I am now embracing it.  It's still not my favorite, but I'm okay with it. 

I will start Tamoxifen next week, which I know brings its own set of problems, but I'll think about that next week.  Right now I'm focused on being DONE with radiation and getting back to normal!  YIPPPEEEE!

Have a great day everyone!

Jenn

Hi Jenn and Joann,

Thank you your support. When I was diagnosed with ER+ IDC, I knew that I needed to do my best to kick this beast, while I waited on all the doctors and lab reports. I have been logging my weight and food on a site called www.caloriecount.com. I find it super motivating because every tool is there plus lots of support from fellow members. I fired my PCP after 6 years, because when I went to see her after surgery and while I was waiting for the oncotype, she told me not to lose any more weight. She did not like her patients too skinny. At that point I was 180 lbs. Argh!! I need to be at a healthy BMI doc, to have a chance with this cancer!! Then she poceeded to tell me how she would not advise taking more than 1000 IU of VitD and Calcium supplement. So she was essentially contradicting my MO. I am still shaking my head on that one. I will see a new PCP at the end of this month. I do hope this doctor is more supportive of my efforts to beat this cancer.

Hi Sinrose50,

You are still early from surgery.  My rad oncologist told me they don't like start rad until you're healed up pretty well from surgery.  Maybe a month or so, but everyone is different. 

I just finished 30 treatments of rad on Wednesday of this week.  Still doing the happy dance!    The side effects for me were a bit of fatigue (I've been falling asleep about 8:30 p.m. every night for the past couple of weeks), some pain at the radiation site.  I didn't gain or lose any weight.  I just ate normally though I didn't get as much exercise as I would have or probalby should have, but I maintained.  I did have some pretty gnarly skin reaction, but again everyone is different.  I pinked up fairly quickly after my first couple of treatments and now my breast is pretty dark, the skin underneath is peeling and a bit raw, and the skin under my armpit and near where I had the nodes removed is starting to turn colors and getting ready to peel.  Just be sure to keep your breast covered in any and all lotions the doctor recommends and/or gives you.  I had silvadene, some rad lotion with lidocaine to help with pain, and domboro soaks toward the end.  It all helped a lot.  A lot of others around here use some aloe gels. 

I will start taking Tamoxifen next week.  I'm scared of the side effects, which include sudden menopause and weight gain, but it sure beats the alternative of having cancer!  So I'm going to do it.  I worry about the hot flashes, but I know they have ways of helping us through those.  One step at a time though.  Just get through rads!  We're here for you!  Good luck!

Jenn

Thanks Jennifer...I guess I have to wait til Monday for my options....

THANK YOU for having this thread.  I too, feel guilty for not having chemo and it feels so good to know others feel the same way.  I tell some close friends that I had a 'lumpectomy' but for me....they only left me a lump!  My tumor was located next to the nipple so it had to be removed.

I am having uterine issues so I have to have a polyp removed at the end of the month.  I am thankful that all of this is appearing at the same time.   Due to my fears of the side effects...also possibility of uterine cancer, i have decided against Tamoxifen at this time.  Get to tell my MO on Tuesday......oh joy. 

My opinion is that recieving the diagnosis of cancer is an emotional hit all by itself, but one that gets buried in the treatment decisions and options that come right after.  We all react to that one event with various emotions, but the focus of the medical community (of which I am a part, so I can be critical and still be politically correct) and everyone around us immediately switches to treatment options.  We are given some info, asked to start making choices (or told what we "need") immediately, then have to go through changes of plans as more info comes along.  By the time we get through the treatment we have been through an emotional roller coaster, and only then have time to experience the feelings that came with getting the diagnosis. 

Someone mentioned wanting to get credit for having cancer.  I agree.  I refused chemo (not enough benefit for the risks, to my mind, didn't have the oncotype to go by).  Rads was a horrorible experience, wound up having a mastectomy to deal with the rads damage.  This almost never happens, as I was told over and over and over again.  It was so rare that no one recognized that I was in physical and emotional pain, or they didn't care.  After all, as I heard over and over and over, it's not like getting chemo. 

Getting chemo is hard.  I'm not denying that.  But getting rads, especially if you get a "sunburn" that looks like a 3rd degree burn, if you get pain that never goes away but gets worse and worse over time, if you get infections over and over and the holes they make never heal, it's just as hard to go through as chemo. 

We who don't get, or choose to refuse, chemo are considered "lucky" but it does not diminish what we go through.  Having cancer, any kind with any kind of treatment, is hard.  There is no such thing as an "easy" cancer to have. 

Perhaps rads is easier than chemo when you get both.  I couldn't say, but mine rads treatment was horrible.  It included hospitalizations, surgeries, months of IV therapy and finally a mastectomy.  Sounds a lot like chemo to me. 

Thanks for letting me rant about this.  It's been a sore spot for me since I started this trip 6 years ago.  At least now I have my life back and am feeling human again, most of the time.  So there is light at the end of the tunnel, even if you can't see it yet!