RE16's Journey with Invasive (Infiltrating) Ductal Carcin...

Survivor: Breast Cancer > Invasive (Infiltrating) Ductal Carcinoma

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 19 years ago, Female, Age: 60, Stage IV, HER2 Positive: No, ER Positive: No, PR Positive: No

  1. 1
    • RE16
    • Experience with Invasive (Infiltrating) D...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    In 1997 I originally had 6 sessions of Cytoxan, Methatrexate and 5 FU. In 1999 it recurred and I had 4 cycles of Adriamycin and 4 cycles of Cytoxan as well as 4 cycles of Taxol.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  2. 2
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    over 5 years ago
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    Hair loss (alopecia)

    Side Effects

    During Chemo you most likely will loose your hair, usually soon after the second infusion. You may find that your scalp becomes extremely sensitive to the extent that it hurts to place it on your pillow. Don't worry this only lasts until the hair falls out, once it is all out your scalp will return to normal. When your hair grows back (approx. 3 months after chemo ends) it most likely will come in quite curly, most folks call it chemo curls. :-) It too will not last forever, eventually your hair will return to its original texture. There is a web site that will send you "free of charge" a hat package which usually consists of 3 or 4 hats and scarfs. All you need to do is go to their web page and fill out a request form. It is a wonderful service, you can find this site at the following web address. http://www.heavenlyhats.com/ In addition to Heavenly Hats there is a site for free scarfs: http://www.goodwishesscarves.org/ Everyone that I know that received one of these scraf's was very pleased with them.

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  3. 3
    • RE16
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    over 5 years ago
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    Chemo brain

    Side Effects

    There are a number of side effects when you have chemo and Chemo brain is one of them. It seems we often loose our ability to easily recall things, even things that may have just happened. I recommend keeping a not pad handy to jot down questions you want to ask your doctor because you will forget them so best to have them written down. I also found it handy to have a large calendar on the fridge for family to jot down notes so I would know what was going on day to day. Because of chemo brain I often would forget to take meds so family members got into the habit and writing me notes throughout the house saying things like take you pill at 2:00 if I saw it several times I would remember to take the pill! It does get better once treatment is over, but for me it has never truly gotten back to the way it was and that is fine.

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  4. 4
    • RE16
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    over 5 years ago
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    Taste change/loss

    Side Effects

    You may find while on chemotherapy that your taste buds change a bit. Many people (myself included) develop a metal taste when eating, this is very normal and not much can to be done about it. I found it helpful to eat with sturdy plastic utensils rather than metal ones, metal utensils tend to intensify the problem.

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  5. 5
    • RE16
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    over 5 years ago
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    Lumpectomy

    Procedure or Surgery

    In 1997 I choose to have a lumpectomy rather than a mastectomy as I was only 40 and thought the total loss of my breast would be too devastating and my surgeon assured me my tumor was in a location that was easily removed without too much having to be removed from the breast. In the long run for me it worked okay because the radiation killed anything that may have been in the remaining breast tissue. It was painful at first but healed up relatively well. The emotional part was a bit of a hurdle to get over. I am a big busted gal so this caused me to be lop sided which I did not care for. In addition to not caring for it I tended to tip a bit LOL! Truth be told I would do it again if given the same choice.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • RE16
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    over 5 years ago
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    Axillary Lymph Node Dissection

    Procedure or Surgery

    This procedure happened during the same operation for the lumpectomy (97). I had 24 nodes removed and in the underarm area of my left arm. I am going to be very honest with you here and tell you my results, but before I do that I want you to know that I would do it all the same because these procedures saved my life! As a result of the node dissection with the vast amount of radiation that I had (16 weeks) I ended up with lymphedema of my left arm and a lot of neurology problems in my left hand. It can be quite painful and troublesome but I am still here and that is where the rubber meets the road so to speak. In the end it was worth it.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    • RE16
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    over 5 years ago
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    External radiation

    Radiation

    In 1997 when I was originally dx I was a stage 2 and required only 6 weeks of radiation after 6 sessions of chemotherapy. After all treatment the cancer came back in my chest wall and sentinel lymph node which then put me in a stage 4 category and required 18 additional chemo sessions and 10 more weeks of radiation. The original 6 weeks of radiation were quite tolerable although my skin did burn sween cream was very helpful in relieving the pain. Fatigue is an issue while having radiation as it truly seems to exhaust you so be sure to rest whenever you feel the need as it is part of your road to survivorship. It is very important during radiation treatment to stay out of direct sunlight as you run a great risk of severe sun burn. After radiation you have to be careful when out in the sun because you will be more apt to burn than you were previously. I still have issue and break out in bubbly rashes occassionally if I get too much sun.

    Painless Experience: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  8. 8
    • RE16
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    over 5 years ago
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    Lost loved one

    Loss

    In 2000 I lost my Mom to ovarian cancer after she had survived two previous breast cancer battles. She originally got cancer when she was 40 then again when she was 45 and last when she was 67. I learned a lot from watching her during her treatments and during the times she was in remission (she and I were in treatment at one point at the same time). She never said "why me" she always just said lets do what we need to do to keep me well. She was amazing and had many, many good years. As a matter of fact she took care of my children while I worked for the first 12 years of their lives, she was like a second mom them. So although it is sad to have lost her she enjoyed life and did not let cancer ruin her outlook on it.

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  9. 9
    • RE16
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    over 5 years ago
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    Lost loved one

    Loss

    In 2007 I lost my sister and my sister in-law to cancer within a month of each other, they were both pronominal women! It was a difficult time for all of us and they are greatly missed!

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  10. 10
    • RE16
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    over 5 years ago
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    Side Effects

    As a result of the nodes that were removed and the vast amount of radiation that I had I developed Lymphedema. It is my understanding that it can develop anytime after one has bc and surgery for it. Mine is in my left arm, hand with some involvement in the shoulder and neck region. Lymphedema causes swelling of the involved limb and can be quite painful. It is important to keep the affected area clean and free of cut and abrasions because infection is always a threat. I have had a 3 staph infections with this so if you develop it be kind to that area. I personally wear a pressure sleeve which bring me quite a bit of relief and it doubles as protection to keep me for insect bites and scratches. I also go to physical therapy a couple times a year to have it massaged and worked over to help with the draining of the lymph fluid. If you are interested here is a link to a short video of my physical therapist explaining the massage as she massages my arm http://www.youtube.com/watch?v=q7PPhHqOsUg you will need to copy and paste it. Also here is a very helpful site you may be interested in http://lymphnet.org/ .

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  11. 11
    • RE16
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    over 5 years ago
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    Side Effects

    During radiation treatment my skin burned and it was quite painful, to aide in the treatment I used Sween cream and Radia Care Gel Sheets which are made by Carrington. They can be found on Amazon.com at http://www.amazon.com/Carrington-CA101052-Radiacare-Inch-Sheets/dp/B001SINCG2/ref=sr_1_1?ie=UTF8&qid=1313036514&sr=8-1

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  12. 12
    • RE16
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    over 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    My cancer returned after my initial treatment in my sentinel node and in my chest wall. To be honest with you when the doctor told us it was as if someone had sucker punched me and sucked all the air out of the room, a simple breath was difficult! The tumor was quite visible just below my collar bone and I desperately wanted it removed! As it turned out my oncologist did not want it removed as he wanted to use it as a "maker" to see if it would shrink when chemo was administered. I was not happy with this but he explained that this was the best course of action because if it did not shrink with the chemo he choose for me he would have to change the chemo until it did shrink. I was fortunate as after my first chemo of my second cancer battle the tumor disappeared. I still needed to have 16 more rounds of chemo to ensure it stayed away but the fact is what he was giving me was working!

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  13. 13
    • RE16
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    over 5 years ago
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    Cancer is shrinking

    Celebration

    After being dx with mastastisized abreast cancer with a mass on my chest wall I was extatic to have the mass totally disappear after my doctor blasted me with the first does of Adrimycin! That was 14 years ago and to date that cancer is still in remission!

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  14. 14
    • RE16
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    over 5 years ago
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    Cancer is back/Recurred

    Oh No

    In 2007 I found a lump in my right breast in about the same location it had been in the original cancer on the left side back in 1997. It turned out to be stage 1 breast cancer. So I made the decision to have the breast removed and to undergo chemotherapy again. I must say it was quite shocking to have it return after 9 years but I knew that was a possibility having seen both my Mother and my sister have theirs return, it is a family trait of sorts.

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  15. 15
    • RE16
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    over 5 years ago
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    Mastectomy

    Procedure or Surgery

    In Oct. 2007 when the cancer returned in my right breast I (stage 1) I made the decision to have it totally removed to eliminate any future cancer in this breast. The operation took about two hours and the recovery time was approx. 6 weeks. It was not horribly uncomfortable of course getting used to no longer having a breast took a little time but it was not an ugly scar and I knew it was done to allow me to have a future. Many people have reconstructive surgery at the same time as the mastectomy but because I had an infection going on at that time the decision was made to wait. In the end I waited two years because I was okay with just wearing a prosthetic breast. I will write about the reconstruction later.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  16. 16
    • RE16
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    over 5 years ago
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    Breast Reconstruction (Implant)

    Procedure or Surgery

    It took me 2 years to make the decision to have reconstruction, the catalyst that brought me there however is rather humorous. Picture yourself showing in the grocery store with you cart filled with food when suddenly you feel something is amiss, you look down and low and behold our prothesis has flipped and the point is now on the inside touching your skin and the flat side is facing outward.....OH MY! I ended up deciding to go with the simpler reconstruction operation to have an expander put in with an implant to follow. The operation to have the expander put in place (under the chest muscle) was pretty routine, it took 6 weeks to fully recover and yes you are sore afterwards. I would then go in every other week to have fluid placed in the expander until the desired fullness to match remaining breast was reached. After each expansion the skin does become tight and some what uncomfortable but all in all it is not too bad. Once the expanding process was complete I went in to have the implant repalce the expander. Again it was much like having the expander in with the same recoup time and soreness. I was pleased to have a fake breast (no nipple) when I was in a bra but not pleased with the no bra results. Whenever I would lay down the darned thing would roll towards my underarm, not attractive nor comfortable. I lived with this for two years because I was tired of operations and unsure if it could be fixed. Finally after two years and the suggestion from my oncologist that I may want to complete the process by having the nipple done I decided to get off my tushy and find out if there was hope for a breast that did not roam when I laid down! I happily found out that yes in deed there was (it is referred to as securing the pocket.) It seem there is a super tape that is sutured into the area that is causing the issues and wahlah no more roaming breast! When having the nipple done you have to choose between very natural looking tattoos (my sister had them and they looked very realistic) or a skin graft that is 3D with an actual lifted nipple created from your own skin. I choose the skin graft figuring I might as well get as close to real as possible. In some cases there are issues with the skin graft not taking, happily that did not occur in my case. In the end I must say I am very happy with my results, so although it took over 3 years to finish it all it was way worth it.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  17. 17
    • RE16
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    over 5 years ago
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    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  18. 18
    • RE16
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    over 5 years ago
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    STOMACH ISSUES

    Oh No

    I have had stomach issues ever since chemo in 99, they relented for time then returned after chemo in 07. I have been told after much testing that I have IBS (irritable bowel syndrome) I had an ultrasound, endoscopy and colonoscopy so I accepted that that must be my problem. Well in July my tummy got worse and remained worse for 8 weeks. I went back to the doc to they did a CT scan (clear) then an MRI (not so clear). It turned out that my gall bladder was going bad on me. Long story short I had it removed several weeks ago (surgery #11) and had instant relief. I had to wait 5 days for pathology to let me know if it was cancer related, happily it was not. I know many of us instantly worry that anything that goes awry may well be cancer so it is always such a great relief when it is not!

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  19. 19
    • RE16
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    over 5 years ago
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    Mass Growing in my Eye

    Oh No

    Well darn it, I recently had my gall bladder out and thought that would be my last surgery for awhile it turns out I was wrong. For several weeks now I have had a really irritated very red eye. I have known that I have a small growth in it as it has been there for years and the eye docs I have seen have not been concerned about it. Well last Monday I went to see an eye specialist and he was quite concerned. He said there is a slight chance it can be cancerous and it must come out....oh great! To say I was upset would be a major understatement. I left his office a bit stunned with a vile of drops to put in eye (if the drops help then no surgery, they are not helping.) I decided to go see my oncologist and get his opinion. He saw me right away (he is such a good dr) and reassured me that he has never seen an eye cancer in that location but that it is possible. He also told me the dr. that I am seeing for my eye is very good. He said it is a small mass and if cancerous would be in the beginning stages. Surgery is scheduled for the 10th I will let you all know how it turns out.

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  20. 20
    • RE16
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    over 5 years ago
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    BONE SCAN

    Procedure or Surgery

    Had my first bone scan in 6 years a few weeks ago, I hate those things just because the machine comes so close to your head! If it were not for that it is truly the easiest test we as patients have to endure. I am happy to report the results were an all clear cancer wise but a good amount of arthritis in my back area, much better than cancer!

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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