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Comments

  • hapa
    hapa Member Posts: 613

    Wheatscapes, I had a 4mm and a few 1-2mm lung nodules at dx and I felt the same way you do about them; there was no scan result that could tell me it definitely wasn't cancer, and if it was I didn't want to know. My MO suggested I get them rescanned anyway because they could have been an infection which would have been treatable (like LilyCh's wife). I had them rescanned, but that part of my lung was apparently obscured by radiation fibrosis. I don't know if it is just coincidence that the nodule area was the small slice of lung that my RO said would be in the rads field or if he decided to give me a two-for-one just in case. I feel like the former is more likely than the latter; they would tell you if they were doing additional treatment, not to mention charge you for it, no? RO said the fibrosis would clear up in another six months or so, but he also said my nipple would go back to looking normal and so far it has not.

    Anyway, I am definitely not scanning mine again. If they got bigger, they are probably cancer and I don't want to know. If they are stable or got smaller or went away it could be due to treatment so like I said there is no result that will say it definitely wasn't cancer.

  • Adhoney
    Adhoney Member Posts: 65

    Lulu44:

    I’ve found that Kadcyla isn’t bad, it’s nothing like the chemo you’re on now. I’m a little bit tired but I’m still able to work full-time. I started on Anastrozole with round 2 of Kadcyla so it’s a little challenging trying to determine what is coming from which med. I feel like K isn’t the problem.

    I’ve read that reaching pCR isn’t common with us triple positives, so if you don’t get it, you’re in the majority. I didn’t know that when I got my path report back & felt a little defeated at first. I also read somewhere that going through treatment for triple positive BC is like running a marathon, not a sprint. I believe they are right. Some days it just feels like this journey never ends.....

    Thinking of you. praying for continued strength during this marathon for all of us.

    Angie


  • annie60
    annie60 Member Posts: 296

    I was (still do at times) getting frustrated at not feeling better after finishing AC and taxol. I am still doing HP every three weeks and am on AI. Neuropathy is driving me crazy, I still have fatigue and feelings of sadness and anger still take over at times. My surgeon told me that recovery from treatment is measured in months and years - not days and weeks. That helped me to be a little more patient. Then I read an article by Dr. Peter Harvey "After the treatment finishes then what?" It was eye opening. It also made me feel more normal - not a wimpy mess that should be feeling better. It's been a year since I started chemo and I really thought I would be stronger now. Working on becoming stronger with exercise and trying to eat better. This is such a slow process.

    We have to be patient with ourselves - easier said than done.

  • missouricatlady
    missouricatlady Member Posts: 894

    Lulu44 - I have a Facebook friend who is posting she is cancer free now thanks to Kadcyla. That is about all I know about that drug, sorry, but she is very happy, I know that.

    Wheatscapes - I am sorry, and think we can all relate to scanxiety, although I have not gotten there yet. One of the ladies in our survivor group had to go to MD Anderson this week for scans and her comment was, cancer, the gift that keeps on giving. Just know that you are not alone. You got through chemo and lost weight and are exercising, good for you!!! We bought an exercise bike Sunday, and now can both get up at 4 am, he gets on the treadmill, I get on the bike, and, hopefully tonight, we can do it again. I have read riding an exercise bike before you go to bed helps with leg cramps - I try everything! Neuropathy and AIs suck, but I read a comment on here somewhere, I am one of the lucky ones who can take AIs, and I tell myself that, repeatedly, when I can't get up off the sofa for a leg cramp terror. I am 56 years old and have figured out I cannot sit around and eat french fries and not move anymore, better late than never!

    I read the exercise article that is on this site when you first come on here, and I also read an article about what to say to your friend with MBC. A lady, I think her name was DivineMrsM, made some comments on that article that were really good, and I looked at her profile, and she recommended these books:

    Anticancer - A New Way of Life - David Seven-Schreiber, and

    Getting Well Again - The Bestselling Classic about Revolutionary Lifesaving Self-Awareness Techniques - Carl Simonton, Stephanie Simonton

    I ordered both from Thrift Books for about $10. Read the reviews on Amazon, if you enjoy reading.

    If I could also add, I get down, and things get dark, and I cry, some days, I can cry about most anything. I believe in letting those tears fall, and then, well, let me share the post I found on Pinterest yesterday, that says it better than me.

    image

  • 1207262
    1207262 Member Posts: 20

    What determines how many lymph nodes are removed for a SNLB? My mom recently had a mastectomy. She said the oncologist told her they were removing one sentinel node. After the mastectomy, she was told that two sentinel nodes were removed for the biopsy. Is this an indicator that the first one likely had cancer in it, so they removed the next?

    What determines, during the lumpectomy or mastectomy, how many lymph nodes they remove? Can they tell during the operation if they're cancerous or do the surgeons have to wait until after the biopsy?

    She had a 1.2 cm tumor with DCIS, no imaging indicated lymph node involvement and there was no enlargement. Which, is what makes me worry that they can/or did spot cancer in the first SN, and took the next as well. I'm having trouble finding protocol/info on this in the search on the boards or in general online information.

    Thank you.

  • laughinggull
    laughinggull Member Posts: 522

    Hi 1207262, you are asking questions about determinations made in the operating room, therefore questions for the surgeon -I would absolutely not rely on the oncologist for this. Typically the surgeon shares in advance the plan for how many nodes were going to be removed and why, did that not happen? Did he/she communicate after surgery how many were removed and why? The surgeon may have removed an extra node out of an abundance of caution, for extra reassurance with pathology. If nodes are cancerous, the cancer may be visible to the naked eye, or only visible under the microscope. If they had found an obviously cancerous node, they probably would have removed more than one extra node.

    The wait is hard but you should get the final pathology a week or so after surgery. Do you have any check-ups scheduled with the surgeon? Can you give their office a call?



  • GrandmaV
    GrandmaV Member Posts: 1,045

    1207262 If they suspected the sentinel node had cancer, I assure you they would have taken al lot more nodes than 2. The surgeon told me before both of my surgeries, they would take the sentinel node ( which light up from the dye they inject beforehand ) Sometimes more than 1 light up or they are so close together they take more. Then during surgery they inspect the nodes with microscope to see if any cancer and will remove more if cancer is found. In my case, my 2011 surgery they took 2 nodes and my 2017 surgery they took 3. I had no cancer in any nodes. Plus I told the Surgeon beforehand of both surgeries I did not want more nodes removed if cancer found during surgery. I wanted to make that determination myself. I think it is very common practice to take 2 to 3 sentinel nodes. I also think it is a good sign that they only took 2 nodes. It means they did not suspect cancer in the nodes during surgery. Of course after they send them to pathology is when you really know the story.

  • Newfromny
    Newfromny Member Posts: 108

    In my case they took 2 sentinel nodes on the right side even though they didn’t think they were cancerous, they were negative. On the left side one node had tested positive before chemo and they suspected 2 other positives, after chemo an MRI no longer showed any cancer, the surgeon took 2 sentinel nodes and 3 others because they looked “gritty” All came back negative

  • neeli
    neeli Member Posts: 73

    3 sentinel nodes taken out during surgery which tested negative. Pathology report says all 3 nodes still have cancer in them. Now i have to do ALND. Any of you have come across this situation? Does node positive after neo adjuvant chemo calls for bad prognosis?

  • GrandmaV
    GrandmaV Member Posts: 1,045

    neeli - I have seen this before. Some women have microscopic cancer cells in lymph nodes.

    Here's a good article on this site: https://www.breastcancer.org/research-news/20090604

  • specialk
    specialk Member Posts: 9,261

    1207262 - sentinel lymph node biopsy (SNB) came about to try to reduce the complications of complete axillary node removal while determining accurate nodal status at the time of surgery. Prior to this procedure becoming standard of care everyone had complete axillary clearance. The goal is to remove as few nodes as possible, however, we all have a differing number of nodes, differing sized nodes, and some are clumped or attached, or encased in a fat pad in the axilla. In an ideal situation the dye and/or tracer will lead to only one node, but often several are removed and all are considered “sentinel" nodes. I wouldn't be concerned about your mom's surgeon removing two nodes - this is very common. The pathologist looks at the removed nodes to determine whether there is cancer present, but the more thorough exam i done later in the lab. Gross disease and extracapsular extension can usually be clearly seen, but micromets or isolated tumor cells (IST) are sometimes only seen later during the more extensive pathology.

  • rlmessy
    rlmessy Member Posts: 97

    Hi everyone...still playing the waiting game here. My breast MRI showed another mass in my left breast, did a biopsy today so waiting on those results.

    I also did a second opinion as there are 2 cancer centers here in my city. Treatment plan was very similar but a tad different in 2nd opinion.

    So, question... did anyone do TCHP (Taxotere® + Carboplatin + Herceptin® + Perjeta®)?

    1st doctor said just TCH. 2nd doctor said TCHP. And when I research both protocols use words like "standard care," "common approach," etc...

    Thanks!!

  • paloma1211
    paloma1211 Member Posts: 95

    Hi rlmessy! I did TCHP. Then did a lumpectomy and radiation. Still had residual cancer and have now switched from Herceptin to Kadcyla (first treatment today).

    I haven’t seen a Kadcyla thread. Think I’m gonna have to start one. :)

  • Newfromny
    Newfromny Member Posts: 108

    I did TCHP, it can be tough but doable, I did get pCR. My worse SE was the nausea, let me know if you have any questions

  • neeli
    neeli Member Posts: 73

    I started a kadcyla thread - https://community.breastcancer.org/forum/80/topics/874047?page=1#idx_1

  • angieb92
    angieb92 Member Posts: 291

    I’m on TCHP you. It is doable. My worst SE is not being able to taste anything for the first 7-10 days so it makes wanting to eat tricky and the Perjeta gives me diarrhea but Immodium handles that so you learn to work around it.

  • wheatscapes
    wheatscapes Member Posts: 50

    LilyCh - Thanks for your input. Did your wife have symptoms that made them scan her lungs? So good to hear that it's only an infection! I bet you are relieved! How did your wife handle all the testing?

    Hapa- You would like you're in exactly the same headspace as me. I have calmed down a bit, but this can't go on indefinitely. I guess the *only* good thing to come out of CT scan and knowing it's mets is that they can treat it til there's NED. Still, I don't want to walk around Stage IV. Mad respect for the ladies that are, I just don't think I'm strong enough for that.

    Missouricat - Yes! The gift that keeps on giving! Truer word were never spoken. I'm just 6 months post diagnosisand I'm so so so tired. I need a BC break. As I'm sure all of us do. Good news about your exercise bike. I have a road bike that I cannot wait to get back onto. Speaking of which, I've been in two bike rallies where someone was stuck by a vehicle and killed. Yet I happily get back on my bike and ride for miles. Yes, I am aware that I'm leaving my life into the hands of Texas drivers (psychopathic motorists, but otherwise nice people), but it doesn't scare me off the road. Neither does all the news articles of people being killed while cycling. Why does cancer scare me so much? Where is my faith?! So many questions. Also, thanks for the book recommendations. I will go to amazon and read the comments.

    My chest CT scan is Monday. Please pray for me, or f you aren't religious, send positive vibes.

  • wheatscapes
    wheatscapes Member Posts: 50

    Me again - Can someone explain the benefits of Kadcyla vs Herceptin? Also isn’t Nerlynx a good targeted treatment for HER2+ peeps to prevent brain mets? Can early stage peeps take either?

  • lilych
    lilych Member Posts: 176

    Wheatscapes, I am re-posting what I did to this topic on July for my wife's scan experiences:

    " Jul 1, 2019 07:53AM - edited Jul 2, 2019 10:57AM by LilyCh

    hapa, Taco196, MACTAZ, Kat22, SpecialK, ElaineTherese, Princess_meg and all:

    Thanks so much again for sharing your experiences regarding the post treatment schedule.

    Sububs and Wheatscapes:

    I would like to share my wife's scan experiences here, it really got a lot of emotions involved at least.

    We used to mention to the BS, two MOs and RO a few times about if my wife needs a scan and they all said no. The BS even said it is simply waste of time and money. However, my wife's vision got worse during the TCHP and was not getting better a couple of months PFC. We were very concerned about that and during one of the visits for HP infusion we asked the MO about the scan again and she said if that is the really what you want for the peace of mind she could order that but she expected nothing will show up. She then ordered both "CT Chest/Abdomen/Pelvis W/Contrast" and "MRI Brain W/WO Contrast". The MRI Brain(which we were concerned most) did come up without anything. However, the CT Chest came out with "Right lower lobe pulmonary nodule measuring up to 1 cm, suspicious for metastasis given the known history of breast cancer. Recommend correlation with PET/CT or tissue sampling". We were so freaked out by the result. The MO said since the radiologist did not necessarily know my wife's history, the impression they concluded is not accurate and the nodule is really small so we should not be too concerned about it. She also said we can wait for six months to get another scan and see if there is any changes. However, a couple of days later she contacted us again that, after they discussed in the tumor board meeting, it is better to know what the nodule is and if there is any activity from that nodule. So she ordered a PET/CT. We did and were hoping this would finally clear out everything. To our huge surprise, the PET/CT result said "Posterior right lung nodule with intermediate activity. This should be regarded with suspicion. It would be amenable to CT-guided biopsy." I spent quite some time to understand what the PET/CT report meant and what the SUV is. Although I did notice that the "intermediate activity" for the lung nodule corresponds to a SUV of 2.6, which is equal to what the liver's SUV (a reference value) and is not exceptionally high, It did not bring the peace of mind as we hoped!!! Instead, we both were extremely scared. To make things even worse, the BS (the chief of breast surgery in the Division of Surgical Oncology) said to us that, when the tumor board meeting discussed my wife's again, they were all surprised by my wife's PET/CT results and he believe it is 90% of chances of a lung mets. I was stunned like crazy when he said that. I asked how he concluded that and he said based on the radiologist's report and demo. Then I pointed to him that the SUV for the lung nodule is not super high, would that need to be taken into considerations as well and the chance of a lung mets can be lower? He seemed to be a little surprised by that and said if that is the case, he would change the chance to 50%, which is still not small to us at all. Anyway, the MO said she is not compelled to have my wife to do the biopsy but the only way to make sure what the nodule really is to do it and she ordered that again. A few days later, the biopsy result said "negative for carcinoma". What a relief!!! The biopsy also said the nodule was caused by an infection. My wife then saw an infectious decease Dr for that, she is taking medications now. A fully recovery is expected in a couple of months.

    "

    Best of luck for your scan on Monday!!! We know exactly how stressful it is for waiting, but please be relaxed, for a dx of "1A" like yours, I believe it is very very unlikely to be a problem.

  • 1207262
    1207262 Member Posts: 20

    A nurse came to the house today and my mom asked her why the surgeon removed two nodes if he said only one. She asked if that meant did he see something, and the nurse said, “probably”. Should we put faith into her comments? She’s a nurse from the oncologist’s department

  • naiviv
    naiviv Member Posts: 308

    Hello all,

    I have not been on the threads in awhile. Needed to take a break. I was treated with TCH in '13-'14. Perjecta and Kadclya were not part of the drug arsenals back then. I am 5 /6 years plus NED depending on when you count from. I am still on exemestane reaching 5 years in 11/2019. I see my ONC in December. I hope to stay on it. Give yourselves time during and after treatment to find your new normal. There will come a time when you don't even think about the C word for a time. Tests and Scan anxiety pretty much remain the same, but it becomes easier with time to get the good results and then forget for awhile. We all have triggers, worries and emotional moments around our children and loved ones that can hit us hard. Or you feel an ache/pain and worry. Now I take an Advil and it goes away. I pray that I never have to face the monster again and that a cure is discovered for all. I am hopeful as I read about new medicines and others reaching and staying in NED. I'll continue reading, If I can help anyone with experience please ask away.

    Be well,

    Vivian

  • missouricatlady
    missouricatlady Member Posts: 894

    Wheatscapes - You are in my prayers. If I can help you in any way, please let me know. Our son lives in Oregon and rides his bike everywhere - be careful out there, there are nuts up in Oregon too! He has lights and all kinds of stuff now, weather gear, and things to put on there to carry things around.

    Nerlynx - I am a candidate for this. I had a positive node at diagnosis, which would have made me a candidate for Kadcyla after HP, I believe, BUT after surgery, my node was found to be benign, which took away Kadcyla, and made me a candidate for Nerlynx (neratanib) after HP. My doctor is on the fence about this drug, there is no statistical data on this after HP yet, although he will go either way, if I want to try it, I can, but he knows it makes some people sick with fatigue and diarrhea and there are no numbers to show what it does for you, if I understood that correctly today at my appointment. There is a breast convention in San Antonio in December and he is going to watch and see if any new news comes out about this and then we will decide, my last HP is in December.

    I owe the hospital about $8000 or so from my out-of-pocket for the last 2 years, and I just do not know if I want to be in a maximum out-of-pocket again for 2020 ($3900), by starting a new drug. Kind of sad that is one of the things to take into consideration, not just your health, sad, but true for me anyway.

  • hapa
    hapa Member Posts: 613

    Wheatscapes - you'd be a candidate for Kadcyla if you didn't get a PCR after chemo. If you had surgery before chemo, then probably not. Same with Nerlynx. I doubt they will still prescribe Nerlynx anymore since Kadcyla has been approved and the data is so much more convincing. When the Kadcyla data came out I had already finished my year of Herceptin, so it was Nerlynx for me. It's not horrible, but I'm still not convinced it's worth it.

    1207262 - if this was a medical oncology nurse, she should have kept her mouth shut because she has no idea what's going on in surgical oncology. If there's one thing I've learned in my 2-ish years of treatment is that practitioners in one specialty have no freaking clue what is going on in other specialties; they give you misinformation ALL THE TIME. And a lot of nurses, and especially nurse practitioners, will try to answer questions that they really should refer to the doctor. I can't count the number of times my MO's NP told me one thing but my actual MO told me something contrary. I might give weight to the surgeon's own PA because a lot of PAs work with a specific surgeon day in and day out, but that's about the only time I would take anyone else's word for what a doctor would and wouldn't normally do. FWIW, I had nine sentinel nodes.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170

    1207262, I want to pop in here and completely agree with hapa on this--unless this were someone closely associated with your surgeon I would disregard her. My breast surgeon explained to me that we all have different numbers of sentinel nodes and they honestly do not know why. I had one, but I think it's more common to have more and compared to the days when all nodes were removed and your risk for lymphedema was very high, having a few removed generally causes fewer problems. The thing that burned me up was that nurse making you and your mother worry when she should have just said, "I don't know." Her answer probably wasn't completely in error, because the surgeon probably did see something--the node took the dye, so it was blue! That doesn't mean there was cancer in either node (only pathology will tell you that), and any implication that your mother's situation is more dire because of having two removed is just wrong.

  • rlmessy
    rlmessy Member Posts: 97

    1207262...I typed this out and must have not hit submit. But I totally agree you should only talk to the surgeon and ask him. Call his office. If he cant accommodate a phone call I would make an appointment. I am huge supporter of self advocacy and if this is making you or your mother worry then just call and ask.

    The nurse should not have said anything unless specifically directed by the doctor to do so.

    While it always sounds like a sentinel node biopsy is just one node sometimes it is not. I have heard of 1 - 3 nodes being removed during a sentinal node biopsy.

    When my mom had her mastectomy in 2006 they removed 13 nodes. Her nodes were checked while she was in surgery and the surgeon kept going until he found clean nodes.

    It could be as simple as the surgeon already being in there and taking 2 to confirm node involvement so he would not have to go back in again.

    While diagnostics and treatment often feel very scripted everyone is still unique.

    Best wishes!

  • mactaz
    mactaz Member Posts: 592

    Hi rlmessy, I also did TCHP, and then an additional 11 treatments of H&P. I had 2 tumors and DCIS In my right breast and had a mastectomy after treatment. I obtained a PCR, even DCIS was obliterated. It is tough but I'm glad they put me on this protocol, everything I read said this was the right treatment options.

    I had diarrhea, constipation, lost appetite - nothing tasted good for 2 weeks of the 3 weeks between treatments and lost 20 pounds I ended up with neuropathy, but only numbness not any pain and I still am glad I had this treatment. I feel good today and it's amazing how the bad memories fade. What ever you decide we are here for you. You can make it.....

  • Adhoney
    Adhoney Member Posts: 65

    Annie60: thanks for your post, well said. I looked up the article by Dr. Peter Harvey—definitely worth reading.

    Rlmessy: I did TCHP x 6. My MO was on the fence, she originally said TCH & that she may add P. I think it was the tumor size that led her to add P. Mine was 23mm. My worst issues with TCHP: fatigue, severe fatigue. Diarrhea from the P: I’d take Imodium throughout the day for about 5-7 days. Taste bud problems: everything tasted like cardboard, except key lime pie & lemonhead candy.

    Wheatscapes: my MO explained Kadcyla as this: it’s Herceptin with an added molecule of chemo. The Herceptin delivers the molecule of chemo to any HER2+ cancer cells that are possibly around.

    Neeli: thank you for creating the Kadcyla group! I’m gonna go there now.

    -Angie

  • Taco1946
    Taco1946 Member Posts: 630

    I agree with Naiviv. Most of the time I don't think about the big C. (although I lost two friends in five days recently). I think most of my current aches and pains can be attributed to arthritis and age rather than the AI's. I do hate the letrozole hair loss although my stylist reminded me the other day that my mother - who lived to be 96 - had thin hair early too. Cancer did teach me how to say "no" and who my friends are. Yes, it is a "new normal" for me but a pretty good one. Third anniversary of my diagnosis coming up fast.

  • rlmessy
    rlmessy Member Posts: 97

    Hi everyone, I finding I dont really know where to be on the boards.i have 3 types of BC, plus the +++, plus one type is rare. UGGGG!

    So, if it's ok I think I am going to hang out here as you all seem to be on the same path as me or have already walked this path.

    I just made the decision to change medical groups today so have gotten all my appointments moved over and diagnostics accounted for. I meet with my new doctor next week and have port placed week after.

    I had a 30 day window in my head that I wanted to start treatmentwithin. But my breast mri showed a mass in my left breast that needed biopsied, turned out to be nothing. So, I am back on track.

    My genetic testing came back negative for the brca genes. I am only 52 so docs thought they would check.

    I think I am good to go. Emotions coming in waves but for the most part I am at peace right now with where I am.

  • missouricatlady
    missouricatlady Member Posts: 894

    This is a good board to be on, rlmessy. The only thing I could add is careful on the expectations, what is that saying, no expectations, no disappointment. My platelets were low twice and I had to miss chemo. Sometimes, things get off schedule, and it is okay. Don't make permanent marks on your calendar. Hugs. Best to you, Lisa

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