Age 74 Undecided About Radiation

SarasotaLady

Hello, everyone


I had a lumpectomy on May 18, 2017 -- see below for info. Now I have to decide about whether or not to do the follow-on therapies of radiation and hormones-- or just do nothing. I'm overwhelmed and depressed that the next (and possibly last) 5 years of my life will be consumed with cancer treatments and their numerous side effects. My quality of life is already limited by shortness of breath (congestive heart failure and asthma), severe arthritis pain for which I can't take any pain meds, and depression (haven't found meds that help). I was just beginning to make plans since my breathing has improved somewhat,and now I feel crushed.

I'd like to hear from women over the age of 70 who chose radiation -- or who decided not to take it. If not, did you take hormone therapy, chemo, or nothing..

What questions did you ask your RO before making a decision regarding radiation -- or what questions do you WISH you had asked .


Thanks for your help.


(I hope my profile shows up. If not I'll add.)

SarasotaLady

Here's my profile -- can someone explain how to get this to reappear

Surgery : 5/18/2017 Lumpectomy Right Breast Mass .7cm Grade 1<

Invasive lobular ductal carcinoma in situ (LCIS) No DCIS present

sentinel lymph nodes: two benign nodes

ER+/PR+/HR2-

Artista928

In your profile you need to go to settings and set each thing your want public so we can see your profile. Right now it's set on private so we can't see your info. GL to you.

Connie1230

I am not 74 but I am 67 so not all that much younger than you. I had a lumpectomy, chemo and just finished radiation today. This all took a year from the mammogram last June. I never considered not doing whatever was necessary but I had a lot of faith in my drs. I would say that most of the women I met doing radiation were very close to my age or older.

Kicks

I am 70 now (71 later this month). I was 63 when DX IBC. I was more than ready to do all I was offered to fight it. I did -A/C neoadjuvant, UMX, Taxol adjuvant and Rads. IF I was told tomorrow I needed to do it again - I do it all again in a 'heartbeat' if needed.

sbelizabeth

I agree with Kicks. If I ever am called on to deal with recurrence, I'd want to know I'd done everything possible to prevent it. I threw the kitchen sink at the monster, dealt with the side-effect badness (which wasn't that bad) and have no regrets. I do have lots of interesting scars that tell a story of their own.

Tappermom383

Hello, SarasotaLady. I am 70 and just about halfway through my rads. My unasked-for adventure began last October with my screening mammo; instead of getting the "come back next year" letter, I was asked to return for more testing - diagnostic mammo and ultrasound. Had a consult with the radiologist over the computer; she couldn't really tell what was going on and so sent me for an MRI. I was then sent to the surgeon, who ordered a core needle biopsy. The result was my diagnosis - partial mastectomy, SNB and now radiation. Once the rads are done, I'll go on an AI for five years.

Why? I have a lot more living to do. I have a 1-year-old grandson who lives in Colorado; I fly there as often as I can to see him. In fact, my surgeon was able to schedule my procedure around a trip I had already booked.

That being said, each journey is a personal one. You have to make your own decisions as to what is the right course for you. Will I have long-term side effects from the rads? Who knows - all I know is that it's going very well right now. I'm fatigued beyond belief but my skin is holding up nicely. I'm continuing to go to my fitness classes three mornings a week to keep up my strength. Many of the women on this forum are taking AIs with little to no problems; until I have a problem, I'm going into this figuring it will be just fine.

Best of luck to you as you make these difficult decisions. Keep us posted. I hope you are healing well from your lumpectomy.

MJ

SarasotaLady

Connie1230 and Kicks: Thanks for your responses. I wish I had your fighting spirit . The prospect of having to deal with all of this for a year or more -- and then who waiting to see what side effects pop up -- just makes me ill. But it's good to know how others have reacted.

Kicks

Don't get me wrong - it was a fight through TX. Not all times were 'fun' at all BUT I refuse to 'just give up' without doing all I can to gain and live/love everyday I am blessed to have. It is our individual choice how we live our life - no matter what 'Fate' deals us. It's life and it is up to us to either give up or to fight for every minute. I have lived a very healthy life for many years until finally IBC hit me. My life (quality of life) is only limited by me if I choose to - as with all. Sure I'm older and just being blessed to be older does not mean I will not fight. But that's life. It is up to us, individually to make the best of what we are dealt or choose to just give up for no real fight.

wrenn

My attitude is 'know when to fold em'

runor

I am not in my 70s. I am 53.

SarasotaLady, the thing to remember is that you hold all the cards. If you decide you want to play the game, if you want to take the radiation and hormone therapy to try and protect yourself from a recurrence, you are free to sit down at the table and play. But at ANY TIME you feel that you are too miserable, you no longer feel it's worth it, then you are free to throw your cards down and leave the table. You are NOT committed to sticking with it if it is ruining your life. You have the power of yes and no. Yes I will try, yes this is tough and annoying, but I think it's worth it OR Yes I will try, this is sucking bad, to hell with this shit, I'm going home!

I think of my own mom, coming 77, a whirlwind, busy, into everything, senior citizen delinquent. She has a 'gang' of lady friends and they are TERRORS! I know my mom, cause she's bad ass like that, would give it a sporting chance and if it was okay, then she'd be okay. And if it bothered her greatly, she'd say screw this - and go do something entirely inappropriate. I hope you find your entirely inappropriate inner bad self and make a choice knowing that you are in control, you are worth the investment in your own care, and that skinny dipping in front of your teen Grandchildren is TERRIBLE for them, but rebelliously good for your own soul! (Grandkids will require YEARS of therapy)

I am sorry you find yourself in this situation. No one wants to be here. Ever. But at the end of the day no one can force you to do anything you don't want. You can start and quit if you need to. No shame.

ChiSandy

Sarasota Lady, if I were diagnosed at 70 with LCIS (which most cutting edge breast surgeons don't even consider to be cancer), a tiny Luminal A tumor, node-negative, grade 1 and a raft of very serious life-threatening comorbidities, I would not hesitate to stand my ground and refuse radiation. At my cancer center, women >70 with tiny non-aggressive tumors like yours aren't usually even offered radiation, just lumpectomy and anti-hormonals. But I am confused about “invasive lobular ductal carcinoma in situ (LCIS) No DCIS present." That whole sentence is a mishmash of contradictions in terms. If it's “in situ," it's not “invasive;" if it's lobular, it's not ductal, & vice versa. Something doesn't add up here. Either your pathologist has severe language problems or the report was summarized ineptly by your doctors. Any way to post a photo of it (with name & other personal info redacted, of course) here?

Meow13

My neighbor was in her mid to late 70s when she had a lumpectomy and targeted radiation and 5 years of hormone therapy. Her skin has dark spots and she has a good size indentation. She hates the look, plus her hair never recovered. But, She is closing in on 10 years cancer free.

I asked her about seeing a plastic surgeon she said no she would not be able to do that. I told her I thought Medicare would cover the costs. She didn't think they would since she didn't have a mastectomy. Not sure that is true. As far as her hair I think stress contributed to that.

SarasotaLady

Connie 1230, thanks for the response. While 67 may seem close to 74, in my case it was a different world. At 67 I was taking spin class, traveling, volunteering . My health changed for the worse at age 72, and it just keeps going downhill.

Tappermom38. sbelizabeth, and Kicks-- I appreciate your sharing your perspectives and I know they're well intended, but I don't feel I'm in control of my health any longer I have no desire to be a warrior. Risk of radiation-induced breathing issues like pneumonitis , lung damage, and other DNA damage weigh heavily on me. I'm not in a good place emotionally .

ChiSandy-- i've been going through study abstracts, and while there's no definitive answer, it appears to me that a case can be made for skipping radiation based on the nature of my tumor and my "comorbidities". I 'm not adept at taking photos and redadacting-- but I can quote the relevant sections of the path report below. I may have screwed them up a bit in posting to this forum. Hope this is clearer:

Diagnosis:

A. "Right breast mass, excision:.

- Invasive lobular carcinoma, well differentiated, .7cm diameter

- Foci of lobular carcinoma in situ (LCIS) (my note: in situ not mentioned again.)

-- Surgical margins free of invasive and in situ carcinoma

Preliminary report (pending additional evaluation)

B. Additional margin right breast

- Atypical intraductal papillary lesion . Evaluation will be performed as addendum :

--No residual invasive lobular carcinoma were LCIS identified

C. "right axillary sentinel lymph nodes "

- Two benign lymph nodes

Pg. 2 Hormone Receptors and HER-2/NEU

Diagnosis: invasive ductal carcinoma ( my note: page 1 said invasive lobular)

ER +, PR+, HER-2: Negative

Pg. 4 Additional margin right breast: Benign intraductal papilloma

Tumor: Invasive lobular carcinoma; Overall grade 1 "No DCIS present"

Stage pT1b; pNO

SarasotaLady

Connie 1230, thanks for the response. While 67 may seem close to 74, in my case it was a different world. At 67 I was taking spin class, traveling, volunteering . My health changed for the worse at age 72, and it just keeps going downhill.

Tappermom38. sbelizabeth, and Kicks-- I appreciate your sharing your perspectives and I know they're well intended, but I don't feel I'm in control of my health any longer I have no desire to be a warrior. Risk of radiation-induced breathing issues like pneumonitis , lung damage, and other DNA damage weigh heavily on me. I'm not in a good place emotionally .

ChiSandy-- i've been going through study abstracts, and while there's no definitive answer, it appears to me that a case can be made for skipping radiation based on the nature of my tumor and my "comorbidities". I 'm not adept at taking photos and redadacting-- but I can quote the relevant sections of the path report below. I may have screwed them up a bit in posting to this forum. Hope this is clearer:

Diagnosis:

A. "Right breast mass, excision:.

- Invasive lobular carcinoma, well differentiated, .7cm diameter

- Foci of lobular carcinoma in situ (LCIS) (my note: in situ not mentioned again.)

-- Surgical margins free of invasive and in situ carcinoma

Preliminary report (pending additional evaluation)

B. Additional margin right breast

- Atypical intraductal papillary lesion . Evaluation will be performed as addendum :

--No residual invasive lobular carcinoma were LCIS identified

C. "right axillary sentinel lymph nodes "

- Two benign lymph nodes

Pg. 2 Hormone Receptors and HER-2/NEU

Diagnosis: invasive ductal carcinoma ( my note: page 1 said invasive lobular)

ER +, PR+, HER-2: Negative

Pg. 4 Additional margin right breast: Benign intraductal papilloma

Tumor: Invasive lobular carcinoma; Overall grade 1 "No DCIS present"

Stage pT1b; pNO

SarasotaLady

Hi Meow13, I believe that targeted radiation is different than whole breast radiation . Much less time involved , less radiation load, plus less chance of scatter. My RO didn't even address that with me. . Her nurse said they used to do that but found the area where the radiation tube was placed didn't heal well. I'll ask about it. Thanks.

SarasotaLady

Hi Meow13, I believe that targeted radiation is different than whole breast radiation . Much less time involved , less radiation load, plus less chance of scatter. My RO didn't even address that with me. . Her nurse said they used to do that but found the area where the radiation tube was placed didn't heal well. I'll ask about it. Thanks.

SarasotaLady

Hi Wrenn, I'm not sure I'm ready to "fold"-- but want to stand my ground regarding radiation and it's difficult. Thanks for the response.

dtad

Sarasotalady....Hi there. I respect and support all treatment decisions made however IMO it's a whole different ball game when your QOL is already compromised when you are diagnosed. I had multiple health issues when I got BC. That 100 percent affected my decision not to take an anti hormone. I had a BMX so radiation was not needed. My advice is to do a lot of research so you can make the most informed decision you can under your individual circumstances. Please feel free to PM me if you want to talk more. BTW I was 62 at diagnosis and 64 now. Good luck and keep us posted.

edwards750

One thing we are all in agreement with is be your own advocate. After all your call, your life.

I had a lumpectomy, 33 Rads treatments and 5 years of Tamoxifen. I will be 6 years out this August. I was Stage 1b, Grade 1, IDC. I also had a small tumor. My BS called it a wimpy cancer.

I never hesitated when deciding/agreeing to my treatment plan. I had the Oncotype test done because my ONC ordered it. She was ambivalent about treatment because I had a micromet in my SN. My score came back@11 so I dodged chemo. I was so relieved I didn't have to endure that I welcomed my Rads treatments. I was blessed I had no real SEs except fatigue halfway through the treatments. Little or no burning.

I am a bit younger than you. Age wasn't a factor for me regardless. I was and still am pretty active so that hasn't changed much and my outlook with this DX is optimistic based on all the stats, etc. No guarantees of course but I rarely focus on my DX these days. Time does help.

There are no right or wrong answers to your decision but whatever you decide don't second guess yourself.

Good luck.

Diane

ReginaZ

SarasotaLady,

I tried to get out of radiation because of my fear of long term side effects, but ended up getting talked into it. My RO told me that if I was over 70 I could skip it as there would be no benefit.

I know how hard it is to go against your doctor's recommendation. If I were you, I would talk to my MO and get a 2nd opinion.

Good luck to you,

Regina

MinusTwo

Like dtad, I had a BMX at 67 so I could avoid radiation. Like you, I was very active & bounced right back. Unfortunately I had a local recurrence at 69, so got stuck with chemo, ALND surgery, more chemo & rads. However that was because I was HER2+. So I didn't finish all the treatment at age 71+. It's been a slog to get back anywhere close to where I was. My MO said it would have been very much less treatment if I had been HER2 negative. Something else to check out.

I do understand that the lobular aspect changes things, but I'm sorry I don't know much about that.

Still - it is your choice. We will support whatever you decide.

Artista928

My mother had a lumpectomy and rads (I think 22 rounds) with a DCIS 2.5 cm dx. She decided against mastectomy and opted for rads. Amazing how ROs differ in advice. My mom was 72 and her RO didn't say over 70 won't do any good. Lots of people over 70 decide on rads, esp if a node(s) is involved.

SarasotaLady

Hi to all:

ReginaZ-- thanks for sharing. I don't want to be talked into anything. I need to be committed to the radiation if I'm going to finish it, and I'm just not there. . I 'm going to write down my concerns about radiation therapy and side effects for someone like me whose cardiovascular system is already compromised. I'll give the paper to my MO and RO in order to keep the conversation on track. Otherwise I can't process what I'm hearing (I just get emotional).

Minus2 -- Thanks. I want my RO to explain treatment to me in terms of my tumor's characteristics -- ER+/PR+/HER - and whether the ILC is a complicating factor. but she launched into presentation that just assumed I had accepted radiation. Will probably go for second opinion.

Artista928 -- Just to clarify-- neither my RO nor MO raised factor of my age -- I raised it in context of my concerns about late cardiovascular side effects on someone like me whose CV is already compromised. I have no known Node involvement . If skipping RT is an option, why not consider and save further damage to CV which is irreversible. . I know endocrine therapy is also not a walk in the park-- am willing to consider.

SarasotaLady

My diagnosis is still not correct under my posting -- ILC is secondary -- limited to foci of lobular carcinoma in situ .Official diagnosis is Invasive lobular carcinoma ILC . Have tried to correct several times. diagnosis is ILS.

SarasotaLady

Well, I met with my RO today and she supports my decision to skip radiation and go straight to hormonal therapy. I'm not posting this to hear opposing views -- , but to help other seniors who may be on the fence by explaining my decision-process. I based my decision primarily on the national cancer guidelines as they apply to my cancer.

NCCN guideline 2.2017 (category 2A): In patients 70 years or older, omission of radiation therapy can be considered for patients with stage 1 estrogen-receptor positive breast cancer who undergo a lumpectomy with negative margins and are likely to complete 5 years of endocrine therapy. Omission of radiation therapy has been associated with a modest increased risk of local recurrence (4% vs. 1% at 5 years; 10% vs. 2% at 10 years). However, there has been no difference in OS or distant metastatic disease.

Due to my concerns about damage to my pulmonary and cardiovascular systems, my inclination all along has been to skip radiation. National Cancer Guidelines gave me the confidence I needed to support my decision.

I'm committed to doing endocrine therapy as best I can, and recognize it isn't a walk in the park. But I hope my MO can get me through it.

Dx 5/18/2017, ILC, Right, <1cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2-

ChiSandy

Good call, Sarasota Lady. I suspected your RO would agree with you.

BTW, my short-protocol (16 vs. 33) hypofractionated (i.e., stronger) targeted rads treatment was external, not brachytherapy. And I pretty much sailed through it. But I was “only” 64.