Is this the right course?
Hello to all here. I have learned so much and taken so much comfort from your knowledge and experience. My hope is to be as brave and confident and positive as so many of you are. But, right now, I'm in a fog and fearful...
My info below gives the outline. Not there is an oncotype dx score of 19, a 12% chance of mets w/5 yrs tamoxiphen. If I had chemo, the report predicts the recurrence could be reduced to 9%. So, I didn't think the gain offset the risks. One more bit of info: the tumor showed no LVI.
I haven't been this fearful since the diagnosis. The surgery was six weeks ago tomorrow and I've healed so well. Only downside, little upper arm swelling that I've begun seeing an LE therapist about.
Yesterday I went for radiation planning. CT, tatoos, assurance heart postitioned such that it would not be damaged by radiation to L breast. (Suspect it's more likely that breast sag toward axilla is the real reason for that.)
I cried all the way through yesterday. No weeping. Just couldn't stop the tears from coming. Scared to death of radiation. Wondering if I should have done chemo. Worried about tamoxiphen. Tired of the whole thing.
I would like to ask you for any input, feedback, opinion that you are moved to offer.
God bless you all.
Thanks.
Comments
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I totally understand your fears. I have always been a person who took things in stride but radiation therapy undid me. But I was never in doubt I would tough it out. It is the standard of care and gives much better odds improvement than chemo in most cases. When I opted for a lumpectomy radiation became a done-deal. Mine too was to the left breast so the heart issue was a consideration.
I did not get off on a good foot with rads. Measurements had to be re-done. The very first day the machine went down. The facility was way off schedule which caused long delays. BUT all the glitches got worked out. I learned to trust my team...it took some time. I did a lot of reading here and felt better about what was happening. My rad onc and the therapists were not good at explaining things to me but the women here filled in the gaps. I learned to speak up and complain if I thought things weren't right.
I had 28 regular and 8 boosts. I didn't really blister badly until about # 25. I had one miserable weekend but was surprised how fast things healed. I had mild fatigue, indulged in daily naps but could have managed without them. My treated breast did not shrivel up
and the radiation tan faded gradually. I am now one year post rads and my tissue is pretty normal. My breast was quite firm until 3-4 months ago. Now it feels pretty normal, soft. I have a couple "cords" on the underneath side but they are slowly disappearing. The nipple is still paler but not too bad. The treated breast is actually slightly fuller than the untreated side. I froze on the table... just too cold! I dressed from the waist down like I was in Alaska instead of Florida! Two pairs of socks, etc. I took Xanax to help with the nerves but I still shook like a leaf. Somehow I could stop the shaking when I heard the machine turn on but otherwise I was a basket case. It helped me to hold something in my hands... I took a fuzzy hair curler and squeezed it.
Once a week I took cookies to the therapists. it didn't hurt our relationship. I learned which ones I preferred and arranged my appt time to get who I wanted. I apologized for being picky but stuck to my guns. The squeaky wheel gets the grease! This was SO not like me... I always just go with the flow and never want to hurt anyone's feelings. But this was so different and life affecting!
The number one thing is to feel like your facility and its staff is modern, careful and detail oriented. Ask how long the rad onc has been on staff, also the physicist and the dosimetrist. Experience matters! Be sure they confirm who the patient is on each and every visit... it is a basic protocol and shows they are being careful.
My best wishes to you. Let me know if there is anything more I can say.
pam
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Oh, Pam. Thank you for your thoughtful, insightful, generous answer. It's so interesting that you responded to me. I've been hanging around here for a couple of months and have read many of your posts. Was it today you shared that you were waiting to get back to your old self in a Class of 2009 post? (Tried to check just now but only so many at everyone's homepage. Is there a way to access older posts?)
Even though there are so many women dealing with this, everyone is alone during it. I love to read and recently finished "The Middle Place" by Kelly Corrigan. Thought she nailed quite a lot of the whole experience, although she's much younger and had little ones while she went through treatment. Now, I'm reading "Songs from a Lead-Lined Room" by Suzanne Stempek Shea. Like us, it was lumpectomy and radiation. Her voice is more somber, more in tune with the way I am experiencing this.
I am being treated in Boston and am confident in the team's competence. However, it's hard to be confident that all the calibrations and measurements are correct, that the radiation will be delivered in proper proportion to my situation...It's all so invisible.
Husband's home. Time to wipe my eyes and have a bite with him.
Thanks again. Hope to keep in touch.
God bless us every one.
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I should have known you were in Boston by your ID!
You should get the best of care there. And you will do great. Yes, it is me whining about not feeling strong. I don't think for a moment I have any radiation SEs now. No doubt it is the Arimidex ... one of its SEs is a general weakness. But I feel better after having my on line melt down and am back to fighting the good fight.
Let me know how things go for you. Are you having IMRT?
Pam
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redsoxfan,
I understand where you are coming from too. I just started my radiation June 1 and after the mastectomy with a TE I really didn't think that radiation would bother me but it has a little. I am receiving my radiation on the left side as well and was worried about my heart and part of my lung and worried about the adjustments as well. They had explained how the blocking worked and that they start on the 11th treatment but as I asked more questions, they showed me in more detail how the computer worked and I could see that the blocks were already in place for when we got to that point. You should ask any questions that you have so they know your concerns and can explain it to you. The way radiation was explained to me, it would reduce my risk of reoccurrance by 30%. Just like you, I had the oncotyping done and my score came back low and my oncologist did not recommend that I do chemo based off of the score. The benefit of the oncotyping is to tell you if chemo will help you in your situation or not so you are not just put through it for the sake of putting you through it. Also, talk to your oncologist about your concerns with Tamoxifen.
Relax, take a deep breath and you can get through this! I have 7 treatments under my belt and 18 more to go! Then on to the wonderful world of Tamoxifen!
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Redsoxfan,
Given your screen name, I really must reply!
...but I am not sure what to say. I did lumpectomy and radiation and am now on tamoxifen. So far the worst I have encountered was the core biopsy.
Radiation therapy is different from most other branches of medicine and can be scary but I can provide some insight. Check for PMs and we can go in a little deeper.
Right now the Red Sox are behind 5-0 but Justin Masterson is pitching for the Indians. As bad as his record has been since the Red Sox traded him can we really root against him?
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RedSoxFan - I too was very nervous about radiation. It seemed so mysterious...strange tatoos and markings, laser beams, big machines, invisible rays, lying there all alone. I had a really bad attitude at my initial consultation and dreaded the whole idea of radiation a lot more than I dreaded six months of chemo. Go figure.
But, I have to say, my fears were baseless. Except for few occasions when they got behind, the TXs went like clockwork. I was often done and back in my car before my scheduled appointment time. The staff was very caring and felt like friends by the time I was done. The 5 1/2 weeks went by amazingly fast.
My skin did extremely well through out and I ended rads with simply a pinkish suntan. As is typical, my skin got a little worse for about a week after the rads were done, but then came back just fine. I finished rads about 10 weeks ago and except for looking a bit more tanned than the other one, my breast looks and feels completely normal. In fact...after rads my lumpectomy scars are almost invisible. My surgeon was amazed.
I completely understand your anxiety about this. But if your experience is anything like mine you'll do just fine, rads will be over before you know it, and you'll be thinking "now what was it I so freaked out about?"
Patty
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Redsoxfan,
I just completed my radiation, and it went well all things considered. I did have redness and some discomfort towards week 4-6. I used biofene twice a day and was able to swim about every other day (I squared off with my wonderful radiaiton onc. who heard how important it was for me to get back in the water.) I was tired, but we think it was still from the chemo. I also started back to work part time, so that added to the fatigue. Mine was on the left side...and over my expander. I was originally told I did not need radiation, until they changed their mind after checking the tumor's margins.
no regrets...keep up with the lotion/skin care, and make sure you follow all instructions from your MD to keep your arm moving (mine got a little tight, but I swim.)
The actual radiation part was quick each day....took more time to get dressed and undressed
hang in there,
traci
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Hi, pam.
No IMRT. 3-D conformal external beam whole breast, supine position. The resident called this morning and asked for more planning time. He said they like to "meaure twice and cut once."
What could I say, but ok?
Another little issue, one that I should have dealt with during my honeymoon post-op healing, decent path report period. I have a some actinic keratoses and a couple of small skin tags--only under my left breast. Should have had them done a month ago, but I was in the fog of relief at the time. Here, back in the fog of fear, I recall the radiologist saying that they would darken during treatment. As the 23rd, the new date, is the outer limit of the eight week window between treatment, I have no time to have these removed and be healed in advance of the radiation.
God bless us all.
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Hi, Cowgirl.
Thanks for the information about blocking. I'll be asking more questions.
When talking with the resident about the change in my schedule this AM, I realized that my treatment period would span the July resident change period. We always used to joke that the best time of year to be at a large teaching hospital was after April to June. The residents/interns had experience by then. I asked the resident about this and he said that the staff oncologist would be in charge for the first three weeks of July. So the residents and their experience will be an issue for my last two treatments and my 5 boosts. You can bet lots of questions then.
God bless us all.
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Hi, Patty.
Thanks for your response and encouragement. What cream did you use to keep your breast in such good shape?..................Excuse me, needed a break for another hot flash. How inaccurately is that? More like a 2-3 minute trip to a sauna fully dressed. Sometimes several trips in a row. Then, to the meat freezer.
So looking forward to tamoxiphen.
God bless us every one.
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I am so thankful for this thread, this day, this night. I loved redsoxfan's comment "during my honeymoon post-op healing, decent path report period". That's me!! My honeymoon period ends Tuesday when I go get my CT and tattoos. I've had a stiff upper lip to this point and all of a sudden, I'm really scared facing rads. I hope it is like some of the other steps where the anticipation is worse than the procedure. Thanks also for the book mentions.
I had my consult a few weeks back, but absolutely nothing procedural was explained. My fault for not asking more questions. I'm a leftie too, will ask about the blocking you mention cowgal. Hopefully will gain a better understanding this week.
Sometimes I still can't believe this is happening. Then the appointments come and the reality sets back in. Oh well, what's 4-6 weeks in the scheme of things.... right?
Taking yet another deep breath
Thanks again for your posts. -
Well now I had to respond because of both of your screen names!! Mine is a boring one, but I LOVE THE RED SOX!!!
I haven't read all the posts here but wanted to let you know that rads are very manageable. I, too, was scared to death of it, but was pleasantly surprised that it was pretty easy. I know some people have problems with it, but I kept thinking that I would rather do the rads than the chemo. I kept moisturizing ALL THE TIME and I think that helped too. I used Aquaphor, which is like vaseline, very pastey, but got the job done. Best of luck to you ladies, you can and will do this!!
And of course..............GO SOX!!
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redsoxfan,
When is your start date? Just thinking of you and wishing you well.
pam
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Hi, kickon2it, pam,
Went out yesterday and bought emu oil (very light, easy to spread, tiny bit of Vit E added), ALBA (original, unscented), aloe gel (no alcohol or fragrance), and Kiss My Face Liquid Rocks deodorant.
Have t-shirts, cotton hook and eye sport bras....
I'll be on the road 3 hours a day, but plan to spend one or two nights at Mother's home about 5 miles from hosptal if I need to. So I'll have an overnight bag with me every day.
When do I start? Simulation on Tuesday (my birthday.) Begin on Wednesday.
Rad oncologist says he'll show me the field, the clips the surgeon left, etc. if it would help me feel less anxious. I think and hope it will.
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Hi,Makraz. Glad to hear radiation went well for you. Also glad I checked the back of the Aquafor jar before I bought it. I'm allergic to lanolin. That would have been fun.
Write down a list of questions and go for it. It's your body. I called with questions last week and got a call back on Friday (not home) and another on Monday. Didn't have my list with my cell phone and couln't remember all my questions. Will bring it to simulation on Tuesday.
Let me know when you start.
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Hi, traci.
Glad to hear you're done. Feel like I should be writing under the heading "How I Spent My Summer Vacation."
Hmmm. Biafine. RN said they didn't use it. But, if I wanted it....
God bless us all.
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Happy Birthday!! It sounds like yo are all set. Best of luck to you!!
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Hope you had a good birthday inspite of medical care. Have you started rads? How's it going?
pam
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Radiation is your friend; remember it is working FOR you, to help insure that you will be cancer free, and as a nurse friend reminded me when it stretched on in what felt like forever before me, "It's just 6 weeks of the rest of your long life." Best of Luck! Ruth
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Hi everyone! I'm hoping someone can offer some advice to me! I have had a mastectomy, finished AC/T chemo 10 days ago, and am going in tomorrow for my radiation "fitting". My concern is that I have seen 2 radiation oncologists for opinions, and both agree that they cannot tell me to have or not to have radiation therapy. They say it is my decision. A little background; I had malignant melanoma 3 years ago, had skin graft and lymph node removal. Lymph nodes were positive for spread so I had a year of interferon. Then, this year, the breast cancer diagnosis - completely unrelated to the melanoma (LUCKY ME!!). The surgeon found 3 lymph nodes left behind from the previous surgery, and one of those was positive for BC spread. The parameters for radiation therapy are 1-3 positive lymph nodes, but since I only had 3, who knows if there would've been more spread?? My family does not want me to do radiation, since I am still trying to get my strength back from the chemo (I did terribly with the Taxol - lots of bone pain). I am of the "whatever it takes to keep it away" mindset, but I am also only 10 days out of chemo!! Any thoughts from anyone?? You are all so wise and knowledgable, and I appreciate any input! Thank you!!
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Hi ....mom,
You might get more response by starting a new topic... but here is my limited opinion:
I did not have chemo but everyone says radiation is much easier to get through than chemo. It is inconvenient to have to go every day but that is a small price to pay if it helps. I am surprised your doctors aren't willing to make a recommendation.
keep reading and maybe a new posting might help.
Good luck.
pam
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