Just diagnosed and waiting, trying not to stress out

Positive2strong

I was told on August 23, I have stage 1 A IDC . The cancer doc says this is not an aggressive cancer. I can't get into surgeon until Sept 20. I am trying to act normal and keep busy. When great anxiety sets in I read the discussion boards. I wish more long timers would post. If there are any groups or people in LA I would love to connect. it is weird but my husband thinks I shouldn't tell anyone so I just have all of you.

He also thinks I shouldn't tell my son. Maybe he is in denial. I am not sure.

My questions range from why have both breasts removed if you are stage 1 and why my docs are ok with waiting so long to see surgeon. Is this ok?

They are recommending lumpectomy and radiation then take anti estrogen pills for 5 years.

My doc said reading too much will get me confused, but I think he doesn't knows how smart you all are. It helps me to read.

I impressed myself how well I did with the biopsy but now I am trying to get strength for all to come.

Is the lumpectomy an in office procedure. I am estrogen + pro whatever - and Hr -

My doc said that is good, why I don't know.

I only have had a chest X-ray and blood work done plus the mammograms and biopsy.

All your words and knowledge are so appreciated.. I am leaving Sunday for Italy for 2 weeks, physically I do not feel like I have cancer and I wonder if it makes a difference if I should eat well, and exercise, or what can I do to help myself.

Please leave your words of wisdom, I need them

ChiSandy

Lumpectomy is not done in a doctor's office, but in a hospital OR. However, it is “same-day-surgery" so you would be admitted to the “Ambulatory Surgery" unit and go home as soon as you AND your doctors & nurses feel you're ready.

My experience was:

7 am: Got to breast center to get radioactive seed implanted (painless, via ultrasound--helps the surgeon tell where the tumor is to make the incision); had to wait till 8 till the procedure, since there were other patients ahead of me

9 am: Walked upstairs to check in to Ambulatory Surgery Unit; got a small room (with a TV and a couple of chairs for family) and changed into a hospital gown; got IV needle inserted and safely anchored;

10 am: Was wheeled to Nuclear Medicine for injection of the radioactive tracer for sentinel node biopsy, aka SNB (the procedure during your surgery by which the surgeon removes the nodes that “light up" with the tracer--because if there was spread, that's where it would go first); was wheeled back to my room, but taken back at 11 am for more nuclear photos

11:30 am: Got wheeled back to room; visit from surgeon to explain and show what she saw on my latest imaging, and estimated starting time (there was a delay due to other surgeries in that OR taking longer);

Noon: Visit by anesthesiologist to hook the IV up to intravenous tranquilizer drip, explain what he would be doing in the OR, and ask if there are any special requests (such as a smaller airway to protect the larynx);

1 pm: Got wheeled in to OR, anesthetized and fell asleep;

2:30 pm: Awakened (seemingly right away) in the Recovery Room where I got some pain meds injected into my IV;

3 pm: Got wheeled back to my room where my family awaited (surgeon visited them while I was in Recovery; got vitals checked and IV disconnected; had a drink and a nosh (since I hadn't eaten anything since midnight) and Tylenol, and observed several times to confirm I was good to go; had IV needle removed and changed back into street clothes;

4:30 pm: Had a transporter wheel me (family following) out to the door of the parking deck; walked to the car, and was driven home by my husband.

I recovered very quickly, climbing stairs the second day and going out to dinner the second night, walking to the grocery with my sister the third day; walking half a mile each way to brunch and the beach the fourth day, and driving home from dinner that night! Your mileage may vary--I was told to expect “extreme fatigue" both post-op and from radiation, but that never happened.

If the pathology from your lumpectomy is the same as from your biopsy, your nodes are negative and your margins are clear, your next step would be to continue healing for a couple more weeks and then start radiation. You'd start taking the anti-hormone pills after finishing radiation.

Luckynumber47

My dr told me this is just a bump in the road, a minor inconvenience, cancer with a little c, not the big C, and that I would be fine. That sounds about right for you too. It sounds like you caught this very early and the pathology points to an excellent prognosis.

Most people have a "reason" to choose mastectomy or double mastectomy over a lumpectomy. I was all set to have a lumpectomy but then they found an aggressive tumor in my other breast so it made more sense to me to just have the BMX.

The hormone therapy pills your dr will prescribe will depend on whether you are pre or post menopausal. You might think from reading here that everyone has terrible side effects but that's not true. Most have either no or minor side effects so don't be scared off by what you read here.

You didn't say how old your son was. I didn't tell my grown kids until after surgery - so I knew what I was up against. If he's young I might not tell him. If he's older he might resent that you kept it from him. You'd know best.

The delay for surgery is no problem. Gives you more time to learn and make decisions. They say the tumor has already been growing 8-10 years. Another month will make no difference.

Sending hugs your way

BC401

My experience with the out patient surgery routine was about the same as ChiSandy For me, the radioactive seed implanted and the radioactive tracer for sentinel node biopsy was done in the same Nuclear Medicine room.

Recommend: 1) Requesting copies of all lab reports 2) Speak frankly with your surgeon as to questions You may have as to the Breast Conserving Surgery. (make a list and take it with You...simply ask about the best and worst case scenario..how many lymph nodes will be removed etc)

As to Radiation ...for me, basically it was a bother more than anything... the treatment itself only takes minutes out of the day... travel etc takes the vast majority of your time.

Am now on my Hormone Inhibitor and am experiencing no side effects.

I too had travel plans (in cement) to try to work around. Cancer is a journey none of us 'planned to take.' For me, staying busy and going on with my life...made me feel better.

In retrospect, for me, the biopsy was the worst of it, because of all the unknowns at the time. You have that behind You.

Have a wonderful trip to Italy. By all means... take real good care of Yourself.

Good luck and God Bless.

ChiSandy

Yup--my treatment plan too was built around my travel schedule: a conference out in Iowa a month post-op, and a Mediterranean cruise two weeks after finishing radiation. (Been to Europe twice more since then, as well as various places around the U.S.). Almost a year post-diagnosis, and scheduled for more surgeries....but totally unrelated (thumb and cataracts). Life does go on!

Luckynumber47

Also, you might want to read up on types of radiation. You might be a good candidate for one of the newer targeted types. Your radiation oncologist will make the recommendation and it might be helpful if you'refamiliar with your options.

ChiSandy

Because of that targeted-beam hypofractionated short-protocol radiation, I was able to finish my treatments in 16 sessions (3 workweeks + a Monday) and felt fine by the day we flew off to set sail. Definitely ask your RO.

Positive2strong

sandy,

You are a blessing. I would have panicked not knowing how detailed if an ordeal it is

Positive2strong

what keeps you strong. I do have a 2 cm lump stage 1

Positive2strong

thank you so much. I am crying because you care. My son is 45 and I will turn 66 in Italy.

This helps me so much

Luckynumber47

You don't have to baby yourself while in Italy, do anything you'd normally do. Walk your legs off seeing the sights, eat all kinds of amazing food and enjoy yourself! Because of commitments I did all sorts of physical stuff between diagnosis and surgery - finishing painting projects at my daughter's house, scrubbing everything in sight getting ready for the new baby. It was good, kept my mind off things and helped me sleep better at night.

My 42 year old son was offended I didn't let him know as soon as I was diagnosed but he's only called twice in the 6 months since. Go figure. My daughter has been super supportive but the boys are more like: "eh, you look fine to me". I actually wish I hadn't told any of them but I kinda think they might have noticed that mom wasn't so "top heavy" anymore.

ChiSandy

Positive, bon voyage--enjoy Italy! At the time I was diagnosed I too had been feeling better than I had in years--lost weight, had two brand-new knees, could walk long distances with no problems. My cancer was picked up on a routine annual screening mammogram....after >20 years of normal ones. The day after my diagnostic imaging I had to fly to New Orleans for an entertainment law course and a coffeehouse gig, then to Philadelphia where my singing partner picked me up for a senior center show outside Scranton, and then a folk festival in a suburb outside Chicago where I was to perform & volunteer. Two whole weeks of normal life between imaging and biopsy. So despite having that “rabbit running around inside my brain” (“I might have cancer,” “what if I have cancer,” “stop catastrophizing,” lather, rinse, repeat), I decided to allow myself to enjoy all New Orleans had to offer me: food, sights, shopping, music. I was walking over a mile, sometimes two, per day. I felt and looked great. A guy 10 years younger than I even hit on me!

So savor Italy while you are in top shape. I just got back from Rome and a tiny town in northwest Tuscany, but I arrived there 15 lbs. heavier and nearly a year older than I did in New Orleans. I still walked like crazy but gave myself a heel spur and foot & leg edema (work up gradually to very long and strenuous walks, and don’t try to look fashionable from head to toe--wear the cushiest sneakers you have for walking on cobblestones), and ate whatever I wanted to, but shared it (well, everything but my gelato) with my husband. But I think I overdid it on the sodium--snacks on the planes, antipasti--salumi & cheeses, salty airline meals; and despite having extra-legroom seats in the premium economy cabin, didn’t get up and walk around enough. When I got home and weighed myself, I’d gained 7 lbs. since the day we left Chicago. I panicked and went to my doctor--who after blood tests put me on a diuretic. 2 days later I’d lost 9 lbs.--so I actually lost 2 lbs. in Italy.

Since finishing radiation, I also went on a Mediterranean cruise, a legal ed. trip to London, Lausanne & Paris, and a music conference--giving a subsequent benefit concert--in NC. Three days later we went to a spa in Texas--well, I went to the spa while my husband was in the hotel's conference rooms learning about echocardiography. We’re planning a trip to Barcelona & Amsterdam for Dec. So there is definitely life after lumpectomy!

Positive2strong

thanks BC, I look forward to your replies. Your comments are what are getting me thru the days. I can't believe I am happy to see the breast cancer email in my inbox.

Linda

Positive2strong

I don't know that I was in the best shape but I just a month prior was so motivated to lose weight. I was down 10 lbs when I got the news.

Thank you for being so patient and detailed with me. If you are in Los Angeles or I am in your city, I would love to meet you.

I will try to post a photo on here and figure out how to get my diagonsis at the bottom.

Must get back to my packing. I think I am doing ok and then I have out of the blue a small anxiety attack. I think it when I have to wait and be still, guess I am better being busy. Last night at an event. I meet a nice woman and she said at least we have our health. Trying to keep negativity out of my head. You are the greatest help with your posts.

Thanks

Linda

FI123

I was dignosed last thursday. I came home made an appointment at Dana farber had a big ass bottle of wine and smoked. The next day a I talk to the surgeon and then went for a pedicure. Thus sucks be good to yourself .

I will pray for your recovery you will be fine stay calm.

Positive2strong

thanks, I am scheduled to have surgery next Monday. Doesn't give you much time to think

Positive2strong

my surgery is now Oct 10. I am stressing out about it. Did you worry about the surgery. Did you do anything to help you to not worry

Sjacobs146

Did I worry? Hell yes! While I was waiting for surgery I just tried to do a lot of fun activities over the weekends. I work FT, so weekdays I was busy anyway. Night times were harder, I did have difficulty sleeping. Tylenol PM was my friend. This is really the worst part of the whole ordeal. Once my lumpectomy was over, and I got my treatment plan in place, I calmed down considerably.

Positive2strong

thank you, I see my dr Tuesday. I don't know what to ask

Would like to know who anathesoligist is and what drug they are using

Do they always take out lymph node is no cancer was found

Nights are bad for me now that I am getting closer

I have never been put out never had surgery... Biopsy was ok for me as I was awake

I once had a reaction to some drug the dentist gave me. Just don't know what to do to stop thinking all the what ifs

I think it is my age... Every report I get back all is ok except things that come with age

My lungs have mild scarring that comes with age I have never smoked

Thanks for caring and responding. I also have a husband that I can not talk to

He continues to be focusing on all his business problems etc he is the drama queen and he thinks I am calm and handling everything. I tried one day to say I am very nervous and he to,d me of a man that came in to his business that had a brain tumor and can't talk etc well that didn't help

I feel confident I can work thru the radiation and lucky this was caught early.

It is just this next step of surgery

Positive2strong

ps I can not figure out how to upload a photo on here for my profile photo this is my recent trip to Italy

I know you all know what I wished for with my 3 coins in the Fountain of Trevi

This

Positive2strong

do you suffer side effects from your hormonal therapy drugs. I was thinking once I got thru surgery and radiation, I was not going to deal with more. Now I am seeing all these posts of side effects from mess

There is cannibalize oil CBD with no THC in it.

I also was Vitamin D deficient , now I am on 2000 IU and my level is in normal range

Positive2strong

thank you, I had a great time in Italy....wish I could have just stayed there and avoided all of this.

Now I am reading blogs of people having horrible side effects from their hormonal therapy meds

Also I don't have a prescription ins plan as I have newer had a prescription, are the pills expensive

Positive2strong

Dear Lucky number,

I did tell my son and I think he was stunned... He has called me each day and he is researching

I haven't told my husband that I told my son but I just felt it was wrong not to tell him.

My husband says this is a private thing...well my husband did come to my last surgeon appt. he asked me if all the women in the waiting room had breast cancer. Maybe he is in some shock...I am not sure, sometime I think he just have felt I am invinceable as I am 16 years younger than him.

I assured my son it is stage 1 and not aggressive

I also have a good surgeon Dr Kristi Funk

Positive2strong

how are you doing ?

Jackster51

Hey positive. Love your pic from Italy!!! Where is your surgery? You are going to do just fine. Like everyone has said, this really is the worst part for you... this whole waiting thing. As far as the anti hormonals and future treatment goes... someone once told be - on these boards - when I was first diagnosed and it is SO true - they said "Don't borrow trouble" I live by that 5 years later!! It's hard at first, but just try to take in one day at a time.. one 'event' at a time.. Otherwise it's too overwhelming. I'm glad you got a nice vaca in!!

Positive2strong

jackster

Thanks I know I move ahead and I am only hoping that looking forward will help me get thru the surgery.

Each day I have found there are more things I don't understand.

I am estrogen + prog - her- I have no idea what that means except estrogen + gets me anti estrogen drugs

I also have a trip Oct 27 to go bro NYC so I think this will be before radiation.

I enjoy chatting with you and others. It really helps.

Linda

Positive2strong

chiSandy,

How are you? I enjoy reading your posts, you know so much and write well.

What type of attorney are you.

Linda

Positive2strong

SJacobs,

This is the worst, I am not taking anything to sleep and last night up until 6:30 am

I just wish I knew why I was so afraid. Sometimes I get thoughts about taking a plane and then something just happens and I have no fear. I am so trying to get over this. I have thought to cancel my surgery.

I need to find strength, faith in caregivers. Did you have terrible thoughts in your head prior to surgery

grainne

hi. I'm so sorry for you. I was absolutely terrified before my lumpectomy. I was convinced i would die under anasthetic, having had a fairly horrible experience during the birth of my first child. I managed to trust my doctors and it really was grand, just like having a really deep sleep. The pain from the lumpectomy was minimal. The radiation was grand and i worked through it without any difficulty. I struggled dreadfully with aromatose inhibitors for 10 weeks before switching to tamoxifen which is fine, with hardly any side effects. I know I've been lucky and i hope you will be too. Get as much exercise as you can, it really does help. Keep posting. Even in the middle of the night, someone will be awake. We all know the despair that comes in the night. It really is true: it does get better. You will cope.

Positive2strong

dear Grannie,

Thanks, when you say exercise do you mean before surgery.

What did you do before surgery to get the negative thoughts out of your head.

grainne

no, after surgery, as soon as i felt ok, which was very quickly. Nothing fancy, a brisk walk is as good as a high intensity work out. I do 40 minutes 6 days a week. i wasn't overweight so weightloss wasn't my aim but i have been noticing lately that my legs have toned up and I'm now striding out in lycra leggings!! My bs told me it will help with any side effects from the medication and there seems to be reliable and growing evidence that it can help prevent recurrence. .

in relation to fear, there is no magic bullet. You just have to let go. When you are in theatre, you are surrounded by experts. If the slightest thing went wrong they would know exactly how to cope. When i came round afterwards, i felt slightly foolish for having been so scared. Please on no account even consider cancelling it. Life is very much worth living and you must grab every chance you get to stay well.

You husband is clearly finding it very difficult to cope at this stage. Bc is private only if you want or need it to be. I told very few people but those i did tell were very supportive. Once you both have a proper diagnosis and prognosis you can decide who to tell. Tell him what you need from him, he genuinely may not know. You have begun a journey and you need him to walk it with you, supporting you or even carrying you if you need it until you are strong again.