Advice on Chemo for my mom

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DeannaM
DeannaM Member Posts: 22
edited June 2014 in Stage I Breast Cancer

Hi Everyone,

My name is Deanna. My mom is 56 years old. She started to have puckering under her arm last May. Over the summer, she was tending to some family members that were sick and was unable to have it looked at until the end of September. They did a biopsy and it was cancerous. They removed the lump on October 18th. They took two lymph nodes also.  The tumor was 2.5. She got the results yesterday and there is a very small amount I think 4mm...I will double check with her) of cancer in one of the two lymph nodes. She is going on November 1st to have all of her lymph nodes removed. They are going to put a drain on the side that had the tumor and is having the nodes removed. On her other side, they are putting a port to use for Chemo. After the chemo, she will do 6.5 weeks of radiation. We go to the oncologist on Monday to talk about the Chemo, but my mind is racing in the meantime.

Does she have to have chemo? I read somewhere that it increase her survival rate by only 1-2%. Does this sound correct? I am worried about the side effects for minimal results. I hope I do not sound insensitive in any way. I just want to understand. My mom has a big fear of Chemo. Her husband just passed afer a long tough battle with cancer.

Thank you in advance for any help :)

ETA: We will know if any of the other lymph nodes have cancer after they remove them on Tuesday. My questions above are assuming that no other lymphs have cancer.

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Comments

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    Hi Deanna - I am sorry to hear about your mom.  There is a newish study out about axillary dissection that may be worth discussing with your mom's doctors.  Here is a link to the summary - LINK. Chemo is tough, no question but if your mom needs it there are many medications that can help with side effects and keep in mind that many go through chemo with only mild side effects.  You need more information about her pathology report - is she HER2+?  ER+?  These are important considerations for treatment. You may want to check out the lifemath.net website.  Here is a LINK - it will give you an estimate of the benefit of each type of treatment. Use the breast cancer therapy calculator.   I think you will be a big help to your mom - (((hugs to you)))
  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    I believe she is HER2 negative. Thank you for the links. I will check them out and send them to her!

  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2011

    Hi, Deanna... another Deanna here...  The info' Omaz gave you is extremely important.  When lymph nodes are removed, there is a serious risk of a condition called Lymphedema, which is basically miserably uncomfortable and painful swelling in the arm and/or truncal area.  Newest research shows that removing lymph nodes, which until recently was done automatically if the sentinel node was found to be positive, rarely impacts staging or treatment, so just isn't necessary in the majority of situations.  

    The fact that you said "all of her lymph nodes" also raises a bit of a red flag for me.  Even prior to this new study, removing level 1 & 2 nodes at most was plenty.  We need as many of our lymph nodes as possible left intact -- not only to prevent lymphedema, but also to do the job they're supposed to do, which is to catch the bad stuff (like the 4mm of bc) before it goes any further!

    Please encourage your Mom to speak up and question her surgeon on this, including showing him the research Omaz gave you!    (((Hugs))) Deanna 

    PS ~ About your question on chemo...  Do you know if your Mom had the Oncotype-DX test done?  That's what is used to determine the need for chemo. 

  • belleeast
    belleeast Member Posts: 653
    edited October 2011

    i would say if it was found in her lymph nodes she would do chemo. i am doing chemo right now, it sucks but truthfully not as bad as i thought it would be. i have done 3 of 4 dd a/c then will do 4 dd taxol then on to 6 1/2 wks radiation.

    like the others, i too question the the removal of all of the lymph nodes. it would be putting your mother at high risk for LE.

  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    I have all of her paperwork in front of me.

     She is ER + and PR+. She is HER2 negative.

     It says the infiltatrating ductal carcinoma grade is 1 of 3.

     In regards to the lymph nodes, it has spread into some fatty tissue that will also be removed. That is what alarms me.

     Also, I need to correct what I stated above. The largest metastatic deposit in the lymph node is 0.4 cm.

    The BS office closed at noon today. I am pretty positive they said that they would remove all of the lymphs. She was in such shock that it was hard to focus at yesterday's appointment.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited October 2011

    Your mom is 3years older than me. I had a grade1, stage 2 tumor. I did the oncotype test & it was low. I had 2 positive nodes. The largest being 3mm, this isn't small when it comes to nodal involvement. I declined the ALND(removal of level 1 & 2 nodes) & opted for RADs instead. I declined chemo but that was my choice. It would only benefit me 6%. Your mom may feel she needs to treat her cancer aggressively for her peace of mind. Many women do. Can she get another opinion? Insurance companies & HMOs can be kinda funny about that. Lots to consider, I was making those decisons over the summer. Always good to ask questions. I felt so alone in my decisions. My husband wasn't comprehending all of it(just too much).Your mom is fortunate to have you to mull things over with.

  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    Thank you all for your responses.

     We are going to discuss not having additional lymph nodes removed with the BS and Oncologist on Monday. I do not understand why they are going in an removing all of the lymph nodes and doing chemo both. It seems like they are being really agressive with treatment, but we are very worried about the risks of Lymphedema (as you all have mentioned). Does that sound okay?

  • coraleliz
    coraleliz Member Posts: 1,523
    edited October 2011

    The study shows that women do just as well with RADs as with ALND. So she will probably need RADs. The chemo is a separate decision, or at least it was for me. Good luck next week!

  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    Coraleliz- She is supposed to have 6.5 weeks of radiation too. This sounds really promising.

    Thank you all for your help. This all happened so fast. The doctor thought her nodes would be fine and we were all surprised by the news yesterday. This board has already provided so much help. Yesterday I felt defeated and today I feel hopeful.

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    DeannaM - Since your mom is ER+ and HER2- it might be useful to do the oncotype dx test.  I am not sure how it relates to a positive lymph node or if it is just for lymph node negative.  At least though it would give you an idea of the benefit from chemo based on your mom's tumor cells.
  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    We have discussed a lot tonight. I will ask her oncologist about the Oncotype test. We have been reasearching all day on the interest. I think she is *okay* with chemo more than she is with the ALND. I do not understand why the BS is wanting to remove all of her lymph nodes when it seems like radiation and chemo will work just as effectivly. My mom has joint problems already, so I am afraid the SE of the ALND may be too much for her to handle. I am going to discuss the study you posted above with the Oncologist Monday and the BS also.

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    DeannaM - Maybe a second opinion about the ALND if possible? 
  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    coraleliz: Thank you for your response. It has been very helpful, as you have a lot of similarities. I just don't understand why they want her to do Chemo, Rads, and ALND. I am going to talk to her oncologist about it Monday. I feel like this has all happened so fast, and we haven't had enough time to process and discuss what treatment will work best for her, considering all of the risks. It seems like ALND will do the same thing that Chemo+Rads will. She is also going to be on a pill for 5 years. I forgot what it is called. It starts with an Ax....

    Thanks you to everyone for your responses. Your input has been very helpful.

  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    We have discussed getting a second opinion . The problem is that the BS scheduled her surgory for Tuesday morning and she has paid both her and the hospital already. It feels really rushed.

    She is pretty set on not doing the ALND. Is it typical for an ALND after a SLND and partial lumpectomy? I don't see a lot of discussion on here about people getting ALNDs. Also, extranodal extension is present. But even with that, from what I have read, chemo and rads still seem to be a treatment option.

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    DeannaM - the pill is probably arimidex which is an anti-estrogen pill.  Is the surgeon older?  I saw 2 surgeons and they were very different.  One of the things I have learned is to be assertive - if you and your mom think the surgery is going to fast then say something. 
  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    The surgeon is 43. The surgeon is very to the point and we feel like we are putting her out by asking questions. I am afraid that when we discuss her treatment, that she will shoot us down or cut us off. We are worried about switching doctors because she did her first surgory. We are going to discuss not having anymore lymph nodes removed with both the Oncologist and the surgeon on monday.

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    DeannaM - Here is the link to the original article.  Best wishes to you Monday!
  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2011

    Deanna, if you let your Mom's surgeon know that she and you have questions and a concern about the ALND, hopefully she will slow down and answer your questions. Your Mom may have prepaid for the surgery, but that doesn't mean she has to unwillingly submit to or be bullied into a procedure she doesn't fully understand the need for, and/or may not want.  It's her body, and we are talking about surgery that can have a lifelong impact.  If she's not comfortable with this surgeon's attitude or demeanor, she may need to make time to get a second opinion, and the surgeon will just have to reschedule her.  

    OTOH, with extracapsular extension, I can see why a breast surgeon may want to remove a few more nodes.  But if I was in your Mom's situation, I would still need to be convinced that it's prudent (which it may be), and I would absolutely insist that they not take any more than they have to -- which I don't believe is all of them.       Deanna 

  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    Deanna,

    Thank you so much for taking the time to write all of that. We are going to try schedule an appointment with her breast surgeon Monday. She is very busy, so I am hoping she can squeeze us in. I am fowarding all of the posts I receivve to my mom. I am hoping that she with time she will be ready to join this forum. Right now she is still not feeling well from her first surgeoy. Thank you, again!

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    dlb823 - Well said!  Sometimes I don't know how to express what I am thinking and you said it well for Deanna and her mom.
  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    Thank you for the responses. We met with the oncologist today. Unfortunately, my mom will have to do the Axillary node removal tomorrow. She will also have a port put in for chemo. After that is radiation and Armidex. We spoke with the oncologist and the BS surgeon about not having to do all of the treatments mentioned, but they were pretty adamant that they were necessary. I was really hoping otherwise, after reading of how all usually are not need. Because the cancer "burst" from the lymph node into the fatty tissue, they are going to treat it very aggressively. We were really thinking about skipping Chemo but the BS is saying that the Cancer has a VERY HIGH chance of coming back if we do not do Chemo. That took me by surprise. Thank you again for the help. If she has none or a minimal amount of additional nodes with cancer, then her treatment plan will be 4 sessions (1 x every three weeks for 2.5 hours). Her chemo treatment will consist of taxotere and cytoxan. Thank you again for your help and responses.

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    DeannaM - Your mom may surprise you at how well she does with chemo.  The important things for me were to drink lots of fluids, eat small meals but frequently, eat protein (the oncology nutritionist told me to do that), take anti-nausea meds (some women don't have nausea but I did), do as much exercise as I could and call the doctor with any side effects that were bothering me.  They have many medications to help with side effects so she will get through it, especially with you to help her!
  • DeannaM
    DeannaM Member Posts: 22
    edited October 2011

    Thank you, Omaz. I am gong to relay all of that information to her. I am hoping she does well, but she is emotionally weak right now. I am going to talk to her about all of the thngs you mentioned. She does not eat a lot of meat, so she will have to eat a lot of beans to get her protein in. She can handles meds really well, but she gets carsick easily. I am hoping she does not get too nauseas, but I will make sure she always takes the med for it anyways.

  • Omaz
    Omaz Member Posts: 5,497
    edited October 2011
    DeannaM - Good luck with the surgery tomorrow. I will be thinking of you both.  (((hugs))))
  • belleeast
    belleeast Member Posts: 653
    edited November 2011

    deanna, i hope everything went well for your mom's surgery, wish her a speedy recovery.

  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    DeannaM - How are things going with you and your mom?
  • DeannaM
    DeannaM Member Posts: 22
    edited November 2011

    Thank you so much for caring! My mom's surgery went well. After the surgery, they had to treat her for pain and that caused her heart rate to rise. That resulted in us not being able to see her in recovery for 5 hours. I am really happy she had the surgery now and I think we made the best choice. My problem is with the drain the put on her back. I was told to grip and pull the tubing to get all of the drainage (which is currently blood and very small amounts of tissue) out. I feel like I am hurting her when I do it. Otherwise, she is handling is very well. I stayed with her last night and will be with her again tonight and for as long as she needs me. Thank you all again!

  • DeannaM
    DeannaM Member Posts: 22
    edited November 2011

    One more update... I am so thankful to say that we got the pathology reports already and there were no more infected nodes. They took 18 additional nodes. So out of 20, she had 1 positive. I am excited beyond words. This means she will only do 4 Chemo treatments. The only downfall is that she feels like her ALND was for nothing now. It really wasn't, though, because they were able to remove additional tissue behind the nodes. She is having a hard time getting in and out of bed and I have to life her by the back to get her up.

  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    DeannaM - So glad about the good path report!  My friend who is a nurse showed me once how to help patients sit up, she placed her hand behind their neck and guided them up.  Might we worth a try.  Keep your mom eating and drinking to build strength.
  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2011

    Deanna, I'm also so happy about your Mom's good path report!

    I know it must be scary seeing your Mom unable to manuever out of bed, but our bodies have an amazing capacity to heal and rebuild, and believe it or not, these days will pass quickly, and she should be able to get up on her own within a few days.  Also, getting those drains out is always a huge milestone.

    And as far as the ALND goes, if she hadn't had it, the stress of wondering if something more complicating had been missed would not have been good either.  Sometimes with bc there's just no easy answer, and no matter which path we choose, we're left worrying about what we didn't do.

    Pulling on drains does sound like it would be painful and could possibly even pull one out.  I was never told to do that; I'd be curious if others were.      Deanna

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