JennyMiller's Journey with Invasive Lobular Carcinoma

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 5 years ago, Female, Age: 72, Stage IIIA, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    over 5 years ago
    JennyMiller's Avatar

    Oh No

    I was diagnosed 11/11/11. The darkest and most difficult time was the time between the phone call telling me I had Breast Cancer and my appointment with the Surgeon. At this time you are unaware of how many have gone before you and survived -- you have no knowledge of what lies ahead -- your mind is clouded with that "C" word that has always instilled dread -- I felt so lost -- I had great support and the survival stories started filtering in -- it seemed that everyone I talked to had a mother, sister, cousin, etc. who had Breast Cancer and was doing fine many years later. So, I started getting hope. I would go from butterflies in my tummy to feeling positive -- What a roller coaster!! -- and, of course, I could not believe it was happening to me. Once I met with my surgeon and set up the dates, I took on a new attitude because I was now getting involved in this battle and moving forward. I looked at each step as a "Hurdle" -- and as I cleared each hurdle, I became stronger --- the Hurdles that I have cleared thus far are : Initial Mammogram (same day - second mammogram, Ultrasound, Biopsies), Phone Call with Diagnosis of Cancer Cells in Lymph Node but not showing in Breast on Mammogram or Ultrasound; Back to Clinic (6 hours -- MRI, Ultrasounds, More Biopsies, More Mammograms - passed out - fell on face breaking nose!! - my grand finale for that day!); Phone call - finally located cancer in breast - blip on MRI; Appointment with Surgeon; Pre-op Appointment at Hospital; Surgery; Call from Surgeon - 4.9 Tumor/Clear Margin - 8 of 11 Lymph Nodes; Bone Scan (clear); Body Cat Scan (clear); Appointment with Surgeon and Oncologist to review all results and set up treatment - 8 Sessions of Chemo followed by Radiation; First Chemo Session - went well - no nausea or bone pain (I took claritin and it worked). Having cleared those hurdles one at a time -- I feel that I am on my way. I have my second Chemo Session this Thursday and now I know what to expect so some of the darkness is removed. Through the support of family and friends and through their many prayers I am remaining positive and confident that the Good Lord will bring me through this storm to sunny days ahead. Anyway, the point I want to make is -- just take one hurdle at a time -- get over it and move forward to the next. As you clear each hurdle, you will gain more control and you will become stronger and a gain a positive attitude. There is a forum on here of long time survivors who had tons of lymph node involvement -- it was a great inspiration for me. Lymph Node involvement was a concern for me -- but if the Lymph Node had not presented itself, I would have gone home thinking everything was okay for another whole year which would have been a disaster. So, in my case,thank God for the Lymph Node Involvement!!!!! Hope this helps a little.

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  2. 2
    over 5 years ago
    JennyMiller's Avatar

    Drug or Chemo Therapy

    here are the "details" and I mean "details" of my first Chemo Session --------------- My Echo Cardiogram Appointment was at 10:45 AM in Syracuse but we headed out early in consideration of the weather. There were some rough spots near Mexico and Parish. However we still arrived at 9:00 AM. Once we registered, I figured I would go to the Heart Unit and see if they could fit me in early which they did. My good old heart passed the test for Chemo. My Onocologist/Chemo appointment was for Noon but I figured we would see if I could get in sooner -- no such luck. First of all, Dr. Lemke is booked solid -- and the morning chemo patients are still occupying the Fusion Rooms. So, we played the waiting game which heightened my anxiety and was a real challenge for Ed to retain his patience for my sake. However, once we were called it, it was like I was the only patient in the whole would. I have never seen so much skill, professionalism, caring and attention given in a Medical Facility. I first saw Shari (my Nurse Practitioner) who answered 11 of the 13 Questions I had typed out. She is the type that you bond with the first time you meet her. As we talked I mentioned that I am just one of many to her while, to me, she is part of single life experience --- so I asked how she manages to make me feel like her only patient. She said that she puts herself in the patient's place and makes every effort to individualize each one as if they were the only one. Anyway it helped. Some of her answers: Tylenol preferred for discomfort. I told her that I heard that if you take Claritin before and after the Neulesta Shot, that it could help with the bone pain - she said that she has a chemo patient who did not take it for her first session and had bone pain and upon hearing about Claritin, she took it for her second session and NO bone pain. My plan is one the night of chemo, one the morning of the shot and 2 mornings thereafter.. She said that Biotene Mouth Wash & Dry Mouth Gum is okay. Soft Toothbrush - no Flossing - and Sensodyne Toothpaste is okay. No Dental work during Chemo. Orajel Antiseptic Rinse is okay for mouth sores but if I get them, she will order BMX for me. Lubricating eye drops for dry eye - NO Visine. My prescription eye drops will not be affected but my eyes may be affected so I will follow up with my eye doctor thereafter. She said that Eucerin is a good choice for the dry skin that is coming my way. For the heartburn -- Tums, Zantac or OTC Prilosec. Shari is a very attractive professional lady -- but when she left the room, she took a moment to tell me that I was sweet and gave me a hug -- Now that helps!!!!!!! Next, I saw Dr. Lemke who has the reputation of the top Oncologist -- another attractive lady who is skilled and compassionate. She told me I can go back on my aspirin regimen but do not take the COQ10 supplement that I have taken with my other vitamins. No matter how busy Dr. Lemke is, when she is with you, you are the only person in the world for her and she gives you all the time you need. She also said kind words on her way out. Next was the Infusion Room - private, heated recliner, heated blanket, TV and chairs for guests. My infusion nurse was Jackie - absolutely devoted to educating her patients and making them comfortable. Of course, I had one more "pick" as they accessed my port. It was not bad since I did not have the numbing cream to use ahead of time. I have it for next time. I got 5 bags and 2 huge push syringes. During my infusion, Jackie spent over an hour explaining my chemo drugs (Adriamycin & Cyclophosphamide), Dehyadration, Cancer Fatigue, Fever (if temp goes over 100.4 - I am to call them because it is a sign that something is starting and we have to catch it before it gets into the blood stream due to low white blood count or I could be in REAL REAL trouble), taste changes, mouth sores, vomiting, etc. After my education, she made sure I was comfortable -- there is a little galley kitchen with Soups, Crackers, Snack Bars, Sodas, Coffee, Water, etc. Since we had not eaten, Ed went to the Cafeteria and got me a Turkey Sandwich which I ate while infusing -- no problem, no nausea then or after. I got done about 6 -- checked out -- and got home just before 8 PM -- and too tired to make any phone calls. I really pushed the water so that I could get flushed out -- of course I saw the pink that I was warned about. I am being careful to follow the rule: Toilet Seat Down & Flush Twice. Off to bed for a strange night - slept good at first then woke up suddenly staring at the ceiling. Back to the bathroom to keep the bladder drained - Back to bed -- could not sleep (probably the steroid) -- felt a little twinge of nausea so I took a Lorazepam which can also make you drowsy -- Perfect Combination!! - the nausea was gone and I slept until 6 AM. I was told that my low count days are 7 to 10 days after Chemo -- days where I should be on strict guard --less people contact- no stores, no church, etc. -- cannot be around anyone who might have had a recent live vaccination, etc. The bottom line is for me to be cautious and protect my health throughout Chemo. My hair will fall out in about 2 weeks -- she suggested getting short hair cut now to help the transition and it may hurt less.

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  3. 3
    over 5 years ago
    JennyMiller's Avatar

    Drug or Chemo Therapy

    I had my second Chemo Session yesterday (Thurs 1/19) ---- It went well. I had a little melt down the night before about returning there. My analysis is that -- Since November 11th, my world had become Cancer, Biopsies, Scans, Tests, Operations, Infusion Rooms, Nurses, etc. I felt like an alien in my former normal world. Everytime I would enter a store or restaurant, I would say to Ed "Hope I don't see anyone I know". The past two weeks was the longest break, except for some blood work, that I had and I was starting to slip back into my old world which might have included some denial. I even had a dream (I have always had crazy, vivid dreams) that I had cancer and going through tests -- and I thought to myself during the dream -- thank God, this has all been just a dream!!!!!!! -- then I woke up and it hit me again -- no dream -- the cancer is real. Anyway, I think that my fear of going back into battle was the reason for my melt down. However, at 6:30 AM on Thursday, we headed for Syracuse and I did not utter one word all the way down. Once, I got within the walls of Upstate and in the Oncology Department, I was back home!! My admitting nurse, Jenna, welcomed me with a smile and a pat on the arm and so many kind words. My Port Nurse ushered me back to access my port with friendly greetings. My Nurse, Jackie, from my First Chemo ran up the hall and gave me a big hug and Ed got one too which he liked. Me infusion nurse for the day was wonderful -- we shared "grandmother:" stories, etc. Dr. Lemke and her NP (Shari) spent time with me and answered all my questions. They were pleased with my blood count which was almost back to normal. They thought I did great - no nausea, no bone pain, etc. I really think a lot of my comfort has to do with the Recipe that Dr. Lemke orders - my infusion nurse commented on the mixture saying "no wonder you are doing so well". I am very blessed to have a top Oncologist --- thanks to my daughter Kim who did the research and would not take no for an answer!!! We got out of there at 1PM and stopped at Zebb's for lunch -- excellent as always. During lunch, Ed noticed I had blood all over my neck and chin -- from my port and also the second incision where the tube goes up over the bone -- I cleaned up best that I could and everything was fine when I got home. I had my son the RN check it when he came over. Today is my Neulesta Shot which I will give myself for the first time. This is to help my body build white blood cells. It usually causes a lot of bone pain but I had heard about taking Claritin to prevent the pain and it worked the last time. My chemo will end in April -- 2 week break -- then six weeks of Radiation -- so I should be done by mid June!!!! We have reservations for a Cabin at Old Orchard Beach in Maine June 24th for a week then onto Lake George in a Cabin for a few days returning home on July 5th. Perfect timing. Dr. Lemke said it all sounds okay to her. She said I should have a "crew cut hairstyle" about then. My hair started falling out yesterday -- I don't like this part of it at all but I got out the wigs and hats last night. Some of those hats are absolutely goofy. I feel good at the moment so I anticipate that this second session will go along like the first.

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  4. 4
    over 5 years ago
    JennyMiller's Avatar

    Side Effects

    Another hurdle!! -- My hair is now gone!! However, if I had to lose it, I could not have lost it in a more loving way. My daughter came over Sunday Morning and as she was massaging my scalp to ease the soreness, my hair just started shedding in handfuls. Then, when my son came over in the afternoon, he and his dad finished it off with the clippers --- then he shaved his head in support of me. So, it was a family event. My profile picture shows my daughter and me afterwards. On about the 5th day after chemo, my throat (walls - muscles?) will hurt for a day or two - not a sore throat -- a little cough with it at times. Kind of strange - just wondering if anyone else has experienced this. No nausea though and the Claritin is taking care of any bone pain so I am not complaining.

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