Deciding if I'm going to take treatment after lumpectomy

Anonymous

Hi there!

I've been occasionally lurking in this forum for a couple of months and it's been a source of inspiration. This is my first post.

In April I was diagnosed with breast cancer. To make a long story short, I feel blessed that my diagnosis wasn't as bad as it could have been.

I had a lumpectomy mid-July. The results of my pathology report are: Margins clear, lymph nodes negative.

I won't see my surgeon for a post-operative exam for two weeks, then he will send me to an oncologist. I'm trying to get a handle on what the oncologist may recommend for treatment.

An Oct. 2017, article at the Everyday Health website is entitled Letting Go of Radiation for Older Women With Breast Cancer. It states that "about 90 percent of women older than age 70 do not benefit from radiation after breast-conservation surgery for breast cancer."

I'm tossing around the idea of not taking further treatment.

I'm 74 years and, though slowing down, I have moderately good health. I've had very negative effects to many medications I've taken during my life, so I typically stop taking them until my doctor can come up with a substitute if possible.

As a result, after reading the side effects, I'm not keen on taking any cancer drugs. Nothing is set in stone but my thinking thus far is No radiation; No pills.

I'd appreciate any feedback. Thank you

Georgia1

Hi there Viewfinder and welcome. I'm not going to say anything particularly original here but I hope I can help your thought process.

It is your choice entirely, and yes, radiation for women over 70 can be skipped. Here's another article to discuss with your doctor, in addition to the one you mention:

https://www.health.harvard.edu/cancer/women-over-7...

As for chemo, it depends on a variety of factors, and an Oncotype DX test on your tissue sample would be helpful. For example, are you healthy enough that you expect to live another 20 years? Is your breast cancer ER positive? HER positive? In general, if your Oncotype DX score is less than 26 you're ok skipping chemo, and you can ask your surgeon to order the test now. Details here:

https://www.cancer.gov/news-events/press-releases/...

As for Tamoxifen or an AI, there is evidence that just two years on Tamoxifen can reduce recurrence rates + strengthen bones. So if you are strongly ER positive, trying that is something to consider, although the study focused on pre-menopausal women:

https://www.medscape.com/viewarticle/863323

I hope that helps a bit as you start to think through next steps. Everything comes with risks and benefits, so finding an oncologist who is open to real give-and-take conversations is my best advice to you. And best wishes!

Anonymous

@Georgia1. Thank you so much for your helpful reply and for all the information.

Since first diagnosed, all the tests and appointments have been drawn out. While somewhat unsettling, I've never taken this as a negative. I figured if they thought my cancer was that bad, they'd take me right away.

Early on, I was told I would not need chemo. I was told I'd need 5-7 weeks of radiation, five times per week. There have been no in-depth discussions about cancer medicines; they take place when I meet with an oncologist.

I have not read my pathology report and, I'm ashamed to say, don't recall what they told me about ER positive and HER positive. They mentioned something about an hormone blocking agent. I think they said Arimidex.

My mom died in her mid-70's and my grandmother in her mid-90's. Both were in nursing homes during their latter years, my mother about two and my grandmother for 13 years.

According to Actuarial Life Tables, I could live 13 more years. If I live that long it is likely that I will run out of money. I do have nursing home insurance and can use it if I meet the policy guidelines.

At age 74, I'm looking for quality of life and don't feel like being sick from treatment(s).

Georgia1

Gotcha, viewfinder. I would definitely ask about skipping radiation given your age; I'm 59 and only did the short course of three weeks rather than five.

And if they are saying "hormone blocking agent" then you are ER+. If I were you I'd ask for a copy of that pathology report, and if the ER percentage is high I'd consider at least trying Tamoxifen, or Arimidex. Some of us have few or mild side effects and the same may be true for you. And not needing chemo is great news!

Anonymous

Thanks once again Georgia1 for the additional information. I feel a bit overwhelmed with all the new terms, options, treatments, etc. I'm trying to educate myself before I meet with the oncologist so I can make a reasoned decision for what he or she recommends as the course of treatment.

Moderators

Hi viewfinder,

For what it's worth, we're attaching this article: When is Radiation Appropriate? As with all treatments, it's extremely personal, and dependent on all different variables. It sounds like you are in good hands, and are reading up on everything, which is terrific.

Please keep us posted!

Anonymous

@ Moderators Thanks for the link to the article!

I've been spending several hours reading about the side effects of hormonal therapy. Yikes!

Question: Can radiation, without hormonal therapy, be sufficient treatment for someone my age?

Sara536

Viewfinder, I don't know if it will be sufficient, but I chose to do the radiation only ( I did not need chemo I am 73. I had the three week course at a center that had very new state-of-the-art equipment. The radiologist is a top doctor in the area and I had a very good experience - just the slightest touch of pink by the third week. She did tell me I didn't need it according to new guidelines but I wanted it anyway because I didn't want to take the aromatase inhibitors (which I did try for four days and couldn't tolerate) and he chance of blood clots, stroke, and heart attack was a scary thought since my father, mother and sister had heart attacks when they were younger than I am now. Of course, every day I wonder if I made the right decision but I'm glad I did. Nothing is certain.

Anonymous

Thank you very much Sara for sharing your thoughts and experiences. Though I haven't even talked to an oncologist yet, my thinking at this point closely reflects yours.

Because of my negative reactions to so many medicines, I'm pretty sure I won't be able to tolerate hormone therapy. Say, though, that the medicine doesn't get me sick, I don't want to run the risk of blood clots, stroke, and heart attack. I've also read they can cause memory loss < Nuff said.

Also, in an August 2017, article at the curetoday website, The Choice to Walk Away From Aromatase Inhibitors**, says:

"The decision to walk away from taking aromatase inhibitors is a choice many women are now making. No longer do they blindly follow the advice of doctors to take medication for the next five to 10 years that may or may not prevent the recurrence of breast cancer."

The "may or may not prevent the recurrence of breast cancer" really jumps out at me!

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**Update: I should point out that this article is written by an individual. It does not state that she is in the medical field.

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kayezzy66

I'm sitting here scratching my head,and reading all this..Ive been on arimedix for 5 years,went for my mamagram in May,and found out I have breast cancer in my left breast ,no lymph nodes,thank god.All I ever heard was stay on meds for 5 years,and no cancer,then went and Dr. said 10 years is best.I said ok, no problem.Now he wants to put me on aromisin,and whats to say for 5 more years,and it comes back.Im 71,and I got to make a decision on what to do soon,and reading the voices of women like me helps.I will keep reading ,and so glad I'm not by myself in this breast cancer .....I was never on aromisin,just arimedix

pupmom

There are no guarantees with cancer. But, regarding breast cancer, the odds are in favor of those who take hormonal therapy for 5 to 10 years. I'm on the 10 year plan and doing fine. No serious SEs. I am 69 years old. Started the medication almost 7 years ago.

Anonymous

kayezzy66 and pupmom,

Thank you so very much for sharing: same disease; so very different stories.

kayezzy66, so sorry to hear that you now have breast cancer in your left breast even with hormone treatment. I pray that it will be treated with minimal negative effects.

pupmom, yes, it seems the odds are in favor of those who take hormonal therapy for 5 to 10 years but, as you said, there are no guarantees with cancer.

As I've written, I am planning to have a full discussion with the oncologist; mull over what he or she says, then make up my mind. I won't make the decision lightly but the tie-breaker for me will be quality of life.

As an aside, I made my peace with God years ago. My biggest concern about dying prematurely is leaving my small family: one daughter, two grandchildren and a sister who lives 3000 miles from me. But I'm no good to anyone if I have side effects that render me near-useless.

Denise-G

My mom was diagnosed at age 80 - Stage 1 - 1.4 cm tumor and she was Er+ PR+ and Her2Neg. She had lumpectomy.

Our local hospital told her she would need chemo and radiation. Immediately, I took her to the University of Michigan Cancer Center where

I had treatment for Stage 3 breast cancer.

We talked to the Radiation Oncologist, Medical Oncologist and the Tumor Board reviewed her case. They immediately ruled out chemo. The ultimate decision of having Radiation was left to my mom, but it would only help her like 3% to endure radiation. Everyone agreed that she made the right decision not to proceed.

She took an Aromatase Inhibitor for 3 years, until she started having side effects. She then quit at age 83.

My mom, my sister, and I have all been on Aromatase inhibitor drugs. We do well, all things considered.

Good luck on your decision.

Anonymous

Thank you Denise for your reply. I am sorry your mother, sister and you have gone through so much. This cancer is so nasty.

Is it normal for someone taking Aromatase inhibitor to have side effects after 3 years? I would think the side effects would start amost immediately.

ElaineTherese

Hi viewfinder!

Different breast cancer patients experience the AIs differently. I've been on Aromasin for about 3.5 years. Over time, my most noticeable side effects (hot flashes, joint creakiness) have faded. However, my bone density has gotten worse. When I began, I had borderline osteopenia. However, I now have full-blown osteoporosis and have to take Prolia to restore my bone health.

Best wishes; I was diagnosed at age 46, so am on the younger side.

Anonymous

Thank you Elaine for sharing your experience.

I'd be concerned about a medicine reducing my bone density, especially at age 74.

I'm a bit flustered right now. It seems like it's taking forever to be assigned an oncologist. On the bright side, I have time to become better educated and forumulate questions before I meet with him or her.

BrooksideVT

So I found your Everyday Health article and clicked on the New England Journal of Medicine article on which it was based.  Contrary to the article, the study actually focused not on breast cancer in general, but only on specifically easily treated cancers (stage 1, node negative, ER positive) with an already low chance of recurrence.  All participants took tamoxifen throughout the five-year study.   As the study began in 1994, it is possible that arimidex was not yet available.  Recurrences were of similar number between the two studies, but those in the radiated breasts seem to have been less aggressive (not necessarily statistically important as the numbers were small).  Those with high risk of recurrence were excluded from the study, so that 10%  benefit quoted simply does not apply to many (most?) breast cancers.

Viewfinder, we all start out thinking we'd prefer no rads, no chemo, no arimidex, but our docs are in the habit of reading stuff that doesn't cross our minds, as well as treating patients over the years.  I'd suggest grilling, yes, grilling your docs about both these articles and any other studies they believe appropriate to you, an individual patient with a specific diagnosis.  Once you have all the information that applies specifically to you, it will be much easier to make treatment decisions.

By the way, the articles on the main site here are a very good place to begin to form an clear understanding of what's what in diagnosis, treatment, and various risks.  Those who post on these community threads about rads, chemo, and so forth tend to be those with individual issues.  It is easy to assume that Patient X's side effect will apply to you.  Most likely, it will not.

Denise-G

viewfinder - Everyone is different on the Aromatase Inhibitors. Mom didn't get side effects until 3 years out - which can happen.

My sister and I had them (joint pain) right away, but after a few years it improved greatly.

I encourage women to give it a try as you never know how your body might respond. After 6 years of taking the AIs, I have practically

no side effects.

Anonymous

Thank you BrooksideVT for your research and clarifications about the article. Right now I'm too much of a newbie to understand a lot of what I'm reading, though I don't intend to be that way for long.

I will grill my doctors and, thanks to this forum, have found so much helpful information. I'm writing down questions. Though I'm not inclined to rush into any treatment at this time, I honestly do not have a closed mind.

I spoke with my surgeon's nurse today about the fatigue I'm experiencing two weeks after my lumpectomy. I meet with the doctor on August sixth and they said I should have an oncologist appointment about three days later. My daughter has been coming to my many appointments; thank goodness she takes notes because it hasn't been easy for me to assimilate all the myriad of information.

Denise, thank you so much for the insights. It certainly wouldn't hurt to at least try the medicines and see if I have any side effects. All I know is that I don't want to feel so badly that I can't enjoy my daughter and grandchildren.

Deisions. Decisions!

My heartfelt thanks to everyone who has taken time to offer information that will help me make an educated decision!

BrooksideVT

Viewfinder, you understood that article perfectly.  The problem is the author dumbed down the study a bit too much, thereby distorting the findings.  Much health info designed for laypeople has a slant that suggests we're better off avoiding non-natural treatments.  Sometimes this is correct, sometimes not.  It's always best to look at the actual documentation and discuss the risks and rewards with your actual MD. 

I know just how you feel.  I thought I had a pretty good understanding of things medical, found out the little I "knew" about breast cancer was all wrong..  I read and studied and read and grilled my docs.  By the time I'd made all my decisions about surgery, rads, arimidex, I felt I'd earned at least a master's degree, possibly an MD.  So much to learn!

Beatmon

My doctor will say...how did you know about that? I tell him my friends on Breastcancer.org told me

DearLife

Viewfinder you are doing a great job of researching your options. This will give you comfort in whatever you decide. It is often said on this forum to make a decision and not look back.

Every situation is different. It's important to get your pathology report and find out the specific hormone nature of your cancer. I am 69 years old, 100% ER positive but only 2% PR positive, HER negative. Because of my age, my Oncologist said I could skip radiation but I am in good health and wanted rads in case I couldn't tolerate the AI drugs. As it turned out, the rads went well, just minor skin irritation and I have not had side effects from the Letrazole.

In my follow up meeting with the Oncologist, he said it was good I had radiation because I am barely PR positive and that is a risk factor. I honestly don't think he looked at it that closely before my treatment so I am glad I did my own research.

I feel better protected after having the radiation and now the hormone blockers.

Good luck with your decisions! And don't look back. Best wishes for putting this all behind you.

Anonymous

Beatmon - I suspect my doctors will ask me the same question, and I'll give the same answer. I've gotten plenty of information at this fine site. Hadn't the foggiest about most of it before I found this forum.

DearLife - Thanks for your kind words. I'm trying best the I can to wrap my head around things that may be pertinent to the treatment the oncologist recommends. I'm not planning to say "yes" to anything at my first visit. I'll need a little time to digest everything and most likely will come back here with additional questions.

They haven't given me my pathology report yet but I will request it when I meet with the surgeon on Aug. 6th.

JoE777

Your diagnosis sounds much like mine at 62. I will be 69 in September. I too had a lumpectomy, 16 radiation treatments, no chemo because of good oncoDX numbers. I tried to take Aromatse inhibitors but gave them up after two years. I'm now metastatic with bone mets in my lower back. I'm determined to have the best quality of life so I know what you're saying. My only advice is to hear your doctors say what your path of treatment might be. Once you have all the info you can make an informed dicision. I breezed through my lumpectomy and radiation in my first battle. Nothing like many of the women have faced on this site. My 10 radiation treatments this time to the back has stopped the pain, stopped the paralysis and shrunk the tumors. Back on AIs to shrink and kill cells. My close next door neighbor took the same inhibitor I did and never had a side effect. I say all this to say, you have nothing to lose. You can stop radiation and tiny pills any time if that's your path to healing. Hugs and a peaceful night.

Anonymous

JoE777,

Thank you for sharing your story! You've been through a lot and I admire your courage, the courage every person in this forum exhibits despite challenges, fears and anxieties brought on by cancer.

You say my diagnosis sounds much like yours but none of the reports ever used the word metastasized. Does this fact make a difference in determining course of treatment?

Of course, I should have a clearer picture tomorrow afternoon when I meet with the oncologist, but I still want to understand as much as I can before then. Thank you so much!

Yaniza

I was diagnosed when I was 64. I opted for bilateral mastectomy after a lumpectomy with clear margins and no affected lymph nodes. I talked to an oncologist but decided against tamoxifen. I've had no radiation and no chemo recommended and no medication by choice. I did have reconstruction. I seem to be doing fine and at 66 I'm going to stay this course. I just reread this and realize that if I was informed that I had a reoccurrence I wouldn't be so cocky. But if any one finds themselves in a similar situation to mine they should ask their oncologist about the increased risk of uterine cancer if they choose to suppress their estrogen with tamoxifen or something similar.

Anonymous

Hi Yaniza,

Thanks for sharing.

I'm new to all of this, and don't understand the rationale for a lumpectomy AND a a bilateral mastectomy. Like you, I have clear margins and no affected lymph nodes. My surgeon never recommended a mastectomy.

At this point, I'm thinking radiation and NO medication, but I'm still open to recommendations. I didn't realize there was an increased risk of uterine cancer if estrogen is suppressed.

Yaniza

Hi view finder, I chose bilateral mastectomy because without it the recommendation was radiation and tamoxifen. As it turned out after the pathology report came back it did show a small mass in the other breast that wasn't a tumor yet, that the mammograms and biopsies didn't pick up.

I don't have recommendations but I know myself enough to know that taking a daily medication that has side effects and can cause an increased risk of another kind of cancer and most importantly also be a daily reminder, of something that I shouldn't be thinking about on a daily basis, wouldn't be a good idea for me. As most people my age know life starts to be difficult unless you're independently wealthy and even then not if you have emotional problems. (And an emotional problem could be someone you love with an emotional problem.) I asked for the bilateral mastectomy because I would have been too worried and apparently rightly so, about my left breast eventually producing the same kind of cancer as the right breast. I was greatly relieved to find out that there would be no chemo or radiation prescribed if I had the bilateral mastectomy. Apparently a lumpectomy showing clear margins and no affected lymph nodes wasn't enough so that if I kept my left breast there would still have been radiation prescribed. And honestly the oncologist did not seem to be terribly worried about my not taking the tamoxifen and if I hadn't asked him the questions that I did about what tamoxifen does and how tamoxifen worked I don't think the increased risk of uterine cancer would have come up.

I ended up with skin-sparing mastectomies.

Anonymous

Yaniza, I know my surgeon discussed a mastectomy briefly when we first met but never in a way that I realized that was an option as it relates to treatment. I even told him on the first day that I didn't want radiation and especially pills. I'm not necessarily blaming him but in my naivete, I didn't even know to pursue it. At my initial meeting, I don't think a word sunk it. My daughter was there to take notes but not sure she understood the alternative either as it relates to future recurrance.

I hope I haven't made a mistake.

The issues you mentioned one faces as they get older, are exactly what I'm facing.

Oneof7

im posting to this forum for the first time. I am in other forums, but am now moving into treatment phase. Many thanks to everyone. While i am one to research, i have backed off with my cancer diagnosis. However, the risk of uterine cancer from hormone treatments is of great concern. I am overweight and it is my understanding that weight also plays a major role in uterine cancer risks. My MO appointment is friday aug 24. I am going to do better prep than previously planned. I find the research trying. As noted by one person, you have to dig into research to understand. Research can be overwhelming for me. I really just want to trust my doctor. Not really a good idea. Ho hum.

pupmom

Oneof7, being overweight is also a risk for breast cancer, including its reoccurrence. I'll never understand the disdain for doctors, aka the medical experts, I see on this board. Of course, there are bad apples in that profession, but most of them definitely know more than us.