Had mastectomy - scared of chemo & radiation

musicalmaven

Hi all,

I'm new to the boards, but I need some input to put this cancer behind me. I had my surgery late August 2009, and had some complications through November with fluid drainage around the expander. I had micro mets to one lymph node, but my tumor was large (tumor didn't form until after core biopsy) 10cm. The onco doc had me do a bone scan, ct scan, and pelvic sono and all were negative for cancer. He did this because I was balking at chemo; since I was on the fence, I asked for the Oncotype DX, even though its normally for stages 1&2 with no positive nodes. I felt that my micro mets put me in the middle (still waiting to see if insurance will pay) and my score can back real low at 11. The onco doc told me that chemo wouldn't add much in view of the score, but my situation was unusual, so he wanted to do TC instead (4-6) instead of AC (4x12). Radiation doc wants to do 25 treatments, but I have asthma too, which is well controlled and don't want to wake it up. Here's the problem, chemo treatments should start within 12 weeks post-surgery and I am 16 weeks out. I finally decided that I will take the radiation (followed by Tamoxifen), but even that has me delaying because of the possible side effects. In view of my Onco score, ER/PR+ and HER2- status, I am still straddling the fence - the thought of the chemo really scares me. I feel great and want to keep it that way, everything I've read about breast cancers that are ER/PR+ and HER2- says that chemo doesn't really give that much benefit. Am I analyzing this too much? Is there still any benefit that I may still gain?

LoriL

I can understand how the thought of chemo scares you. But, with a 10cm tumor, I would not hesitate one bit in having chemo. My onc. told me that 2cm is typically his "cut off point" in recommending chemo in node negative women. Plus the micro mets don't exactly make you "node negative." TC seems to be much more tolerable than AC. Even though you are a bit late in getting started, I'd go for it. Hugs and good luck!

Anonymous

Hey Mav, i can absolutely relate to your fears. I cried all the way to my first Chemo treatment which happened this week. Very honestly, I feel sick as a rat right now and am still straddling the fence on this. I did not think it would hit me this hard, but other women get through it and you will too! I got the same lecture, that chemo would only give me about a 1% leg upon this disease, and it is only being offered because I cannot be taken off of Prempro right now. BUT, when I got sober 21 years ago, they told me I had 1% chance of getting sober and if I did, maybe nine months to live because my body was so shot. Give it to HP and go girl! Sending Hugs (((((hug))))))

everyminute

I got through it - I finished chemo last november, over a year ago.  I was scared and not happy about the whole thing but my gut told me (even before the positive lymph nodes) that chemo was the right plan.

I did well with chemo - hated losing my hair and had about a week each cycle (so every other week) where I was tired and vaguely car sickish. Never threw up though.  Still walked 1-3 miles almost every day and more when I was feeling better.  Starting running again after AC and went onto taxol.  No mouth sores, no neuropathy, no lasting effects as far as I can tell.  I have since gone on to do a sprint triathalon (I had not swam or biked in about 20 years before chemo!) and a half marathon.  I am now addicted to spin classes (something I never did before!)

I wouldnt dream of telling you what to do.  I know that I didnt hesitate.  I am a firm believer in no regrets.  If bc comes back, I will never say "I wish I had done more"

On that note -

Zometa is showing great promise as an anticancer agent - it is a bone builder (bisphosphonate) like Boniva. There was a study where it was given with anti hormonal where it reduced incident of recurrence by 36% (no chemo)

If you will be going on Tamoxifen, ask for the Tamoxifen metabolizing test.  Some people do not metabolize it well and it makes it much less effective for them. 

I wish you the best.  Feel free to PM me with questions.

Merilee

Musical maven

I was terrified of chemo and opted out of it a year ago. In November I had a recurrance and am currently in Chemo. I can honestly say that it has not been the nightmare I imagined. They give you lots of preventative meds to help keep sickness away. You may want to ask your Onc if CMF will work for you. It is a bit milder than other types of Chemo

everyminute

My other niggly concern is that your tumor grew quickly - from core biopsy to 10 cm with micromets - that is fast which generally equals agressive.

KerryMac

I would just add that although it is totally your decision, I would personally take any benefit I could. So even 1-2%, for me, would be worth it.

If you do decide to go for chemo, it really isn't that bad at all. I started a year ago today (I just remembered that!!) and finished up at the end of April. It seemed like a very long four months at the time! And, I will not lie to you, sometimes it was really tough going. But there will be nothing you will not be able to get through.

Whatever your decision though, be happy with it 100% and don't look back. 

momand2kids

Kerry,

I started a year ago today too... it really seems like a long time ago.

Muscial, all I can tell you is that for me, chemo was a no-brainer.  My oncotype was higher than yours, but I was all for whatever would help--by choosing chemo, I was driving down my recurrence risk to less than 8%....I was in the intermediates range on the oncotype with no nodes- but I kept thinking "what if one or two cells slipped out???"

I think you have to go with your instinct--chemo can be hard--I had 4 rounds over 8 weeks-so it was quick--- and there were some tough days in there--- I never got sick and I was able to work through much of it, but I never felt completely "well" either.  But,for me, it was the right thing and I never look back and wish I had done something differently.... I used the "can I sleep at night" with this decision test.... and I have slept soundly every night since.

I agree with Kerry, you have to make your decision and not look back.  But chemo is not the horrible experience that it was even 10 years ago--- they have really made great strides.  It is not fun, but you can do it.  

Best of luck-I know this is a hard decision.  

Gabrielle

Hi,

I would take the chemo and radiation.  I'm 10 years out and NED.  I support aggressively hitting it with chemo as early as possible.  You can get through chemo (I didn't find radiation to be bad at all).   It will suck but there is light at the end of the treatment tunnel. 

The best to you,

Gabrielle

Bugs

If you can't fathom thinking of 4-6 chemo treatments, think about them one at a time.  It's really not as bad as your mind is making it to be and if you take them one at a time it will be over before you know it.  You can ALWAYS decide to stop, but how can you make an educated decision based on fear?  10cm is a huge tumor (mine was 8.5).  Hit it with what you can right now. Don't think about radition right now...that's after chemo.  Take one thing at a time.

AnacortesGirl

Bugs made a couple of really good points to consider.  One at a time and you can stop if needed.

When I'm faced with tough decisions my acid test is to ask myself  "will I have any regrets if I do (or don't do) this?".   I don't want to live my life wishing I had done things differently.  But on the other hand, if I decide not doing something won't cause me to have regrets then I know I made the right choice at the time.

Chemo isn't fun but it's defnitely doable.  I worked through my first 12 weeks of taxol and sutent.  It wasn't until my 4th weekly AC that I decided I couldn't work any more.  And it wasn't necessarily the SEs that got to me.  It was the stress.  I had been through 4 months and I knew I had 2 1/2 still to go.  Down to 9 weeks!

jenn3

I didn't think twice about having chemo.  I knew it would be hard, but I wanted to do everything in my power to fight this disease.  Chemo was hard at times there were bad days, but more than that there were a lot of good days in which I was able to go to dinner, the movies, walks with the dogs, events at my daughter's school and get stuff done around the house.  Like everyone says "it's doable'.

I know it's a hard decision and wish you luck............. know that if you have more questions or just need to talk this is the place to come for support.

apple

chemo was very doable for me.. I carried on with my life as if nothing were different..  I was never nauseous and got a couple colds that were quickly arrested with antibiotics.   I lost my hair and that was traumatic, but there are cold caps one can wear now.

I so strongly urge you to do all you can to keep the beast at bay.  It will be over before you know it.  The chemo experience was actually quite pleasurable.. the friends, nurses, opportunity to listen to my ipod and study pieces without children clamoring for my attention was something I came to look forward to.  I could just imagine those cancers cells dying a painful death.

The side effects of cancer are far worse than those of the treatments.

I'm a musician and continued to play, never missed.

Kathy16

My first tumor situation was different than yours, but I was node positive (3) and they told me surgery alone gave me about a 50/50 chance that I would not see the cancer again.  That's why the chemo was added.  Between surgery, 4 cycles of T/C and tamoxifen, at the end he estimated my odds approached 90%. 

It's understandable to be so afraid - I was terrified.  But everyone who has posted saying it's doable is right - and we wouldn't sugarcoat the truth.  If your medical team manages your side effects well, you'll do fine.  I never threw up and after 1st cycle I knew exactly what to expect - in fact, #2-4 were better b/c they added drugs to help me once they knew how I responded to the chemo.  I only had 4 cycles, so if you are scheduled for more, you may find more SEs, but it might be worth a try if your team thinks there would be benefit to prevent future mets.  If you decide on chemo, the chemo boards are very helpful - I think they're starting a February one now. Good luck in your decision and don't be afraid to get a 2nd opinion. 

Gitane

Hi musical,  

Even those who are supporters of using OncotypeDX have said that tumor size and nodal status must also be considered when you make treatment decisions.  Because you have a large tumor and some spread through the lymph nodes (although fortunately very little!), you may want to consider that chemotherapy and radiation could be beneficial.  Cancer can spread through the blood system, too. 

The hormone receptor levels on your OncotypeDX report will tell you if you are likely to benefit from hormonal therapy.  Higher hormone receptor (ER and PR) levels indicate that you have a higher probability of responding to hormonal therapy, but as others have said, find out if you metabolize Tamox. well before deciding between that and an AI.  

None of us wanted to do chemo.  However, as you can see, many of us wanted to do whatever it took to prevent the spread of BC to other parts of our bodies.  Once that has happened we have a much more difficult treatment path.  Listen to your doctors' recommendations, make your decision as objectively as you can and don't look back. 

What ever you decide, know that we are all here to support you in any way we possibly can.  Hugs! 

musicalmaven

Just to clear up a point, Every, I delayed surgery (yeah I know) 5 mos AFTER the biopsy. Tried working with a naturalpathic doc, didn't work. That's why the fresh biopsy allowed the tumor to now be palpable. Here's another interesting point: I am one of that 10-20% of women whose cancer is not detectible by mamo, ultrasound, or self exam. My disease was discovered two weeks AFTER I had my annual mamo (I am now 49, was 48 then), when I rather suddenly had a bloody discharge from the lefy nipple. Too scary for me! My bse never felt any tumor, nor did my primary or initial breast surgeon. It seems that the scar tissue from the biopsies and blood fed the cancer cells, until I had a palpable mass. But the tumor itself started as a grade 1, with the final diagnosis (upon removal) being grade 2.