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Just diagnosed

dlattimore22
dlattimore22 Member Posts: 6
edited April 2023 in Just Diagnosed

Hey ladies, never thought I would be part of this group but here I am. Readingcomments has been very helpful. I was diagnosed last week with IDC, possible other area in the same breast. Not sure of the stage yet, hope to find out tomorrow during my appointment with the "team". It has not spread to my lymph nodes so that's good. Genetic testing will also be done tomorrow. My question is how did you decide lumpectomy vs mastectomy? I know my tumor is small, and my boobs used to be large but lost weight and now they kinda just sag. I know there is no wrong, but how did you decide?

Comments

  • moderators
    moderators Posts: 7,683
    edited April 2023

    Hi dlattimore22, and welcome to the club nobody wants to join. We're all here for you Medicating.

    Here is one of our articles that may help you: mastectomy vs lumpectomy. Specifically, check out this page on deciding factors. We hope you gain knowledge and support here, and please reach out if we can help in any way.

    Warmly,

    The Mods

  • quinnie
    quinnie Member Posts: 113
    edited April 2023

    dlattimor I am so sorry you are going through this. The decisions you are faced to make are very difficult. Both my breast cancers were very small, with no lymph node involvement so I decided on lumpectomy with radiation. My second cancer resulted in the need for hormone supression which I would have needed even if I had a mastectomy. I also decided on a breast lift after my second cancer which I am very happy with. Minimal discomfort for me after. Having the 2 lumpectomies, radiation and of course aging made me very droopy so the lift was the way to go for me. So far so good. I hope this helps but the final decision will be up to you and your final pathology. good luck.

  • dlattimore22
    dlattimore22 Member Posts: 6
    edited April 2023

    Thank you for sharing. So many scenarios and decisions. I'm struggling to determine what is right for me. I don't ha be much breast tissue and am concerned what a lumpectomy would look like after for potential 2 areas removed. Leaning toward total mastectomy with reconstruction but is that too drastic???

  • dani_p
    dani_p Member Posts: 36
    edited April 2023

    So sorry you had to join the club dlattimore22! When I was first diagnosed, my breast surgeon had me do an MRI to make sure she knew everything that was going on, which led to a biopsy of each breast (my IDC was in my left). The biopsy found another spot of IDC on the left, thankfully benign on the right. Since I now had 2 spots of IDC, my surgeon told me she could no longer reasonably offer me a lumpectomy. I had pretty much decided to do a mastectomy, and I ended up doing both sides because I didn't want to worry about finding something later on the right side. I did immediate reconstruction with tissue expanders to start, and had my exchange to implant surgery 4 months later. I didn't have much trouble with either surgery.

  • meow13
    meow13 Member Posts: 1,363
    edited April 2023

    Initially, I wanted lumpectomy but the cancer board recommended mastectomy. I was sick when I heard this but I decided mastectomy with later DIEP reconstruction on left side. I had no idea plastic surgery could be so good. Happy with decision 12 years out. No radiation was great.

  • dlattimore22
    dlattimore22 Member Posts: 6
    edited April 2023

    Thank you! I have decided mastectomy with reconstruction and I have PS consults this week and next. It feels right to have them taken especially with the 2nd area that I chose not to biopsy since they are taking them anyway. Hard decision but feels right

  • baileyjumper
    baileyjumper Member Posts: 17

    Thank you for sharing your story @dlattimore22. I'm 32 and was just diagnosed with DCIS yesterday and now have to decide between mastectomy vs radiation and hormone therapy. It is so hard to decide. I feel absolutely stuck on what to do.

  • snm
    snm Member Posts: 54

    Some tips for you to consider dlattimore22 on your upcoming mastectomy:

    My Breast Cancer Journey from the perspective of a physician/patient/wife/mom of 3 boys and 1 pup:

    Dec 2022- First screening mammogram (Age 45, no risk factors) found over a 5 cm area of microcalcifications of left breast near nipple, which then led to 4 additional mammograms and ultrasound biopsy.

    Biopsy showed DCIS, high grade on left; right breast was healthy.

    Hard decision led to Bilateral mastectomy with removal of nipples (was told there would be a 10% chance of cancer affecting the healthy breast over my lifetime). Prior to surgery, I had small breasts.

    Feb 8 2023- Bilateral mastectomy with left sentinel lymph node biopsy (ie. 2 lymph nodes removed) and immediate reconstruction with placement of tissue expanders, skin sparing but not nipples.

    After couple weeks, the pathology results showed DCIS extending from pectoralis muscle to the skin, except for 1 area of microinvasion (1.3mm), lymph nodes negative, ER-, PR-, HER2+. Stage 1 A. Recurrence rate is low, probably <5%.

    No radiation or systemic chemotherapy needed.

    Implant exchange planned for this May.

    TIPS TO SHARE WITH OTHERS GOING THROUGH THIS:

    Arrange support, support, support! Family, friends, neighbors, doggy day-care got me through this.

    My healthcare team members were very supportive, though some had different bedside manners. Their differences took me by surprise at first, but their hearts and minds were in the right place.

    The nurse from the breast surgery clinic gave me a packet with instructions, including suggested items to buy for recovery post surgery which all came in handy (pillows, to drain shirts, surgical bra etc). She gave me a drain belt which I used along with the drain shirts.

    American Cancer Society is a good resource for post-op exercises. I also was connected with a local breast cancer survivorship program which suggested that I get physical therapy arranged after the surgery (at 3 weeks post op mark had 1st appointment). This was extremely important in my recovery!

    By speaking with other survivors, I made a few other helpful purchases: body wipes as I didn’t feel comfortable showering with my drains in, although you can if you dress the wound site to prevent infection (drain shower caddy may be helpful), and front zip sport bras.

    Plastic surgeon’s “breast exam” is different from what we women typically think of a breast exam. Measurements are taken in varying dimensions of your breasts like breast protrusion, distance from nipple to clavicle etc. It does feel odd, but I had remind myself that he is tasked to build something out of nothing, essentially. Though decisions can wait regarding details around reconstruction, there is A LOT of information to digest (implants vs flap, nipple reconstruction vs tattoo). Few things to note from discussion: Silicone breast implants have very small risk of associated lymphoma, small risk of breast implant illness, and different sizing options like round vs tear drop shaped and various protrusion levels. Implants will likely need replacing in 10-15 years to ensure integrity. MRIs are needed every 5 years or so to screen for any asymptomatic leakage. DIEP/tissue flap option has a longer recovery time but patient satisfaction is typically high. There is a small risk for graft rejection and 4 drains are most likely needed post-op if done bilaterally. Go flat option is becoming more popular but might need an additional chest graft to prevent chest from looking concave. I opted for sub-pectoral implant option as I was not an ideal candidate for the DIEP and did not want to go flat.

    Many well-wishers call and ask about the details of what’s going on. All with good intentions, but unfortunately the story is on repeat and re-lived over and over. It’s OK to say no when you don’t want to talk or OK to change the topic away from your bosom. :)

    I was being prepared for a same day surgery, but I ended up spending a night in the hospital due to some complications: unexpected blood loss due to vascular breasts with subsequent hypotension and complicated intubation due to a small airway which led to transient stridor (ie breathing difficulty). Also I had some post-op nausea, requiring Zofran. My workplace had given me an acupressure antinausea wrist band which seemed to help along with aromatherapy massage oils and an imagery guided meditation/mindfulness tape, latter helped me stay calm before the surgery.

    After the surgery, I had to share a room in hospital with a disruptive roommate, which added to my post-op discomfort. I would highly recommend bringing good ear plugs and eye shades, in case you have to stay in hospital. IV beeps, hallway noises, light from hallway all make resting near impossible. I had a pectoralis nerve block which helped with pain on first day but gradually wore off on day 2. I was given a touch sensor to call for nurse when needed, as it was difficult to reach for the nurse call button. Immediately post-op, the pain felt like an elephant was standing on my center chest, and it was difficult to take a deep breath as my chest felt very tight.

    At 5:30am next morning, surgical teams round and a lot of information is given to you while you are sleep deprived and under the influence of pain meds. My suggestion would be to instruct them to call your family or friend with that information.

    If you can, take home the large water cup with handle and straw that you use during PACU stay, as you will be drinking a lot of water. Also extra gauzes, antibiotic ointment, tape, etc are useful items to ask the hospital for upon discharge. My husband bought latex gloves, a bottle of isopropyl alcohol, rubbing alcohol swabs for milking of the drains, cotton swabs, and several different types of tape as the hospital tape was too sticky for my skin. He finally found one that worked for me called NEXCARE and bought 4x4 gauzes and tegaderm pads. My husband had to learn quickly about wound care - main goal was to prevent infection.

    I had 2 drains, very uncomfortable and painful at times especially during the “milking” of my left drain. After 2 weeks, 1 drain was removed, but the left stayed in for few more days. My husband milked the drains for me.

    Expect restricted range of motion of your arms after bilateral mastectomy (even lifting arms out 30-45 degrees is very difficult in the early days) and hypersensitivity of skin over the lymph node biopsy site. My drain shirts with zipper closure were convenient for easy access to the surgical site for dressing changes and was made of soft material that felt good on my skin. Eventually I transitioned to button down shirts and bought a few fruit-of-loom front fastening bras and a post-mastectomy camisole. The restricted range of motion of both arms was also difficult to deal with as I was so dependent on others. I couldn’t wash my hands under the sink as I couldn’t move my arms forward, as an example. Creative ways of washing were undertaken, like placing hand sanitizer in the bathrooms, or using a bowl of water to wash hands, or having my mom help wipe me down with body wipes and with dressing. Would recommend having some oversized sweatpants/elastic waist pants to easily slide in and out of.

    Post-op: I experienced different types of neuropathic pain, typically not all at once: electric type zaps over chest, pins/needles, and burning, particularly where nipples use to be. The milking of the drains sometimes triggered the onset of the neuropathic pain. Also I had a severe discomfort (ie heaviness/ache/like you got punched) under left armpit where lymph nodes were removed, despite not having much lymphedema. The pain after the surgery is quite severe so keep up on your pain meds and don’t forget the muscle relaxant. I underestimated the neck/back muscle spasms but they came in full force. Heat, massage and a warmed up “rice” sock helps. Also your posture changes during the early days post-op as you tend to hunch in a flexed position to guard against the pain, which leads to your balance being slightly off. Getting out of bed is tough as it seems like your core strength is knocked out. I slept in a recliner for first few days. Neck travel pillow also was used a lot. Sleeping is tough as you need to rest on your back (not on the side due to the risk of tissue expanders moving). I eventually transitioned to the bed with a bunch of pillows, and my husband helped me out of bed for first week or two. Eventually all of the pain/weakness/discomfort gradually subsides over 6 weeks or so. I unfortunately had continued pain under my left breast and into ribs below, which turned out to be due to superficial thrombophlebitis. I took ibuprofen and eventually aspirin 325mg daily for a week along with application of a heating pad to the area (Caution-when using heating pad, avoid burning your skin as you are numb). It took me a couple months or so for this pain to go away. I have sensation over sternum and some over medial aspect of temporary implants/tissue expanders but majority of the area is numb (able to feel some pressure however). I am also numb in left armpit and back of lower shoulder due to lymph node removal.

    Pain meds: I took Oxycontin for first 2 weeks when pain was severe and then transitioned to Tylenol and ibuprofen around the clock with tapering off over next 4 weeks. Also bought some omeprazole to help protect my stomach from the ibuprofen. Muscle relaxant helped as well. Make sure you take some stool softener while on the oxycontin to avoid constipation.

    I saw my bilateral mastectomy incisions about 5 days after the surgery- approximately 3 inch horizontal incision where the nipples use to be. The incision scar stretches as tissue expanders are filled.

    If it is winter during your surgery, have oversized open sweater cardigans and an oversized winter coat (I used my husband’s), especially for the first 5 days post-op if you plan on leaving the house, as your arms are restricted in their range of motion. An oversized robe/cozy slippers are nice, but you might need help getting robe on during the early days.

    Time off from work: I took 6 weeks of FMLA time off from work after bilateral mastectomy with tissue expanders. On my return, 1 week of a lighter work schedule was arranged. I have requested 2 weeks of FMLA off from work for my upcoming bilateral implant exchange reconstruction.

    Travel: I went on flight 4 weeks post-op with tissue expanders in place; I received medical letter as there is metal in the tissue expanders, and it can trigger scanner at airport security. I did not have to lift my bag as I had a small carry-on that fit under the seat, but one can ask for help from flight attendant.

    Tissue expanders were filled to 50 cc immediately at time of bilateral mastectomy. Over a couple months expanded to 400 cc each. Was told approximately 200cc equals 1 cup; however one’s body size may change the proportions of how big or small the implants appear. Tissue expansion during fills was painless to a dull pressure. Occasionally took ibuprofen prior to the fills. Stretching sensation goes away in a day, but tissue expanders are uncomfortable all the time- feels like a corset or an iron bra is on!

    3 weeks post-op- Able to walk 1 mile on elliptical and used arm bars to passively range arms back and forth. Had low back ache and left arm pit felt very uncomfortable. Worked with physical therapy to help with pain and with restricted range of motion of arms. Started to drive! Wore sports bra for a period of time. Initially the sports bra felt too tight and I only wore post-surgical bra. I preferred to wear post-surgical bra at night.

    4 weeks post-op- Physical therapy diagnosed me with “cording” under left arm pit (kind of like scarring/connective tissue formation) which likely contributed to my pain. They stretched it out and taught me exercises to alleviate pectoralis muscle tendon tightness. Was cleared to do some overhead activities.

    5 weeks post-op- Some limited range with overhead activities but getting better. Tight pectoralis muscle tendons had to be stretched out frequently. Shopped at the mall. Had a 10 lb weight restriction. Still with pins/needles sensation over former nipple areas during the evenings, though lessened in severity. Tylenol helped relieve that discomfort. Walked 3 miles on elliptical.

    6 weeks- Range of motion better but not totally back to normal; getting close though; physical therapy gave me a set of instructions regarding exercises and stretches to do at home. Plastic surgeon instructed me to avoid planks/push-up/laying on chest to prevent displacement of tissue expanders. Started exercising with some very light weights.

    7 weeks- Intimacy with husband: I felt more comfortable keeping my camisole on while with my very patient husband. With contraction of my pectoralis muscles, I can see the tissue expanders/temporary implants sort of ripple/move under the skin. Feeling unsure about your new body is normal.

    My implant surgery is this May. Hopefully I can share some tips after I see what that's all about!

    Take care!

  • jh40
    jh40 Member Posts: 139

    Throwing my experience in here. Small-breasted and I had a 1.9cm lump. I opted for mastectomy with no reconstructive surgery because I wanted the least amount of surgery and my oncologist didn’t recommend radiation, which is required with breast conserving surgery. I stayed flat because an implant felt like it would have been not right for me.

    One reason I’m glad I had a mastectomy is because they found accompanying DCIS with the tumor.

    It’s a very personal decision and no decision is wrong. :)

  • yippeekiyaymf
    yippeekiyaymf Member Posts: 25

    Hey there- I wanted to chime in as I haven't seen many posts from those who chose lumpectomy/partial mastectomy. I did and for me it was a super difficult decision. my surgeon recommended this but was entirely open to mastectomy. (It might have been a tougher conversation if I requested double as there were no indications that it was needed for my physical or mental health). Background is early stage and they thought less than a cm ( but it ended up larger) they thought not in lymph nodes as ultrasound showed nothing -but with the sentinel node biopsy it turned out it was in my lymph nodes. (Here we do not get PET scans or MRIs unless it is indicated and I still don't have my hereditary screening info yet- I would have loved all the info to make my decisions however in a public health care system they treat the most immediate piece of the puzzle and all the tests follow evidence for what is needed when and of course some availabilty as well) I say this as all of those pieces can go in to your decision making. For me a big piece was considering the mastectomy and avoiding radiation but as it turned out I would have needed some anyhow for the lymph node involvement. Soooo if you head is spinning just know most of us felt or are feeling that way. I'd say ask the experts their opinions and then ask more questions until you are satisfied and then once you make your decision ….. be all in, don't doubt yourself and don't look back! You've got this.

    PS I am super happy with my choice - ( I had lumpectomy with sentinel node biopspy, then chemo ( due to lymph node involvement, just finished radiation and am moving on to endocrine therapy next)