Jump to content

Menu
Giving You and Your Child a Road Map to the Best Possible Education
The Well-Trained Mind Community

Sorry to keep bugging everyone, but . . . Breast cancer treatment?

Jenny in Florida

By Jenny in Florida,
in The Chat Board

 Share

Recommended Posts

  • Replies 150
  • Created
  • Last Reply

Top Posters In This Topic

Popular Days

Top Posters In This Topic

Popular Days

Popular Posts

Jenny in Florida
Jenny in Florida

So, I woke up. They apparently did remove some number of lymph nodes on the side with the cancer. So, we're waiting for the pathology report to know where we go from here, but we are now down to

Jenny in Florida
Jenny in Florida

Just in case anyone is wondering: I did get the drains removed at the second surgical follow-up, which greatly improved my quality of life.  Both the medical oncologist and the surgeon's MA

Jenny in Florida
Jenny in Florida

So, here's the update: I'm scheduled for a bilateral mastectomy tomorrow. I wrestled with the question of whether to stick with unilateral or go ahead and remove the second breast.  And I s

Halftime Hope

Halftime Hope

Posted
Posted

Jenny, I haven't been on here in months, and i'm so glad I popped in just now.  I will hold you close in my prayers tomorrow and over the next few weeks, and i'll check back in here to see hwo you're doing.   

I'm glad you decided on a bilateral surgery. Under the circumstances, that will give you some peace of mind.    

Know that you are loved, appreciated, and cared for.  

Valerie, also a BC survivor, with my 5 year marker this month.  :-) 

  • Like 3
Link to comment
Share on other sites
Scarlett

Scarlett

Posted
Posted
3 hours ago, Æthelthryth the Texan said:

Hugs. I am so sorry. 

It is good you are acknowledging the loss of you body and the significant impact it will have on you instead of blindly smiling and saying, "Oh it will be fine they're just boobs. I'm a warrior!" Those patients always made me very concerned.  I know that sounds weird maybe for me to say, but my last job before retiring to be sahm was as director of an oncogenomics department in the major cancer center here fwiw,  so I've seen more of this than I could tell. And well, the people who went in *rah rah* to a procedure such as yours with no sense of loss at the beginning trying to be super positive in huge smiles and being the rock for their family  (I think there was denial there on what their appearance means to them- and well, to anyone) were blindsided much worse on the backend after the surgery and really ended up struggling in many cases. So I think at least acknowledging that upfront and most importantly, out loud to your family and friends surrounding you before your surgery, will actually put you in a better mental spot afterward, as you navigate the recovery and treatment to follow, because you are already admitting that sense of fear and loss and therefore will hopefully handle it in a more straightforward fashion to get the support you need in the following weeks. 

And you do need and deserve support. So often people and patients alike treat it on the surface like "just" another surgery like removing an internal tumor or something, but it isn't. The desire to live up to this whole "warrior" image that I honestly hate, that society has produced because it then introduces perceptions of winner and losers, I think has made women and men feel this need to put on a stoicism and brave face that isn't fair to expect of any patient facing a life altering surgery. And that leaves family and friends often unsure of how to address the procedure. Do we encourage? Do we show we are sad? Do we minimize it? So in one way, this whole focus on cancer and survivors and "fighters" I think has caused even more complications for the patients and families actually going through the removal of what are very key body parts that do actually affect lifestyle and continuing parts of what it is to be a person. And those things are what really need to be talked about the most. (And I'm not rejecting the importance of a positive attitude but that's another story and for a different immediate situation.) 

I encourage you to take advantage of the mental support offered by your hospital post surgery if at all possible- hopefully the offer some one on one support and not simply group therapy/support..Surgeons are tacticians and that is about it past the procedure and making sure the healing is enough for the next stage. But you need people who understand all of the changes that will come to your life with the loss of your breasts. 

Again, I am sorry for what you are going through. I think it is among the most difficult things a woman can face. I hope you don't mind what I just posted and that is doesn't cause you more distress. I just wanted to let you know that it's beyond normal for what you are feeling right now. If you weren't feeling that, then that would be the concern. Hugs. 

Such an excellent post.  So sorry Jenny about what you have to go though.  But happy you have the chance to live more years.  Update us when you can.  (((Hugs)))

Link to comment
Share on other sites
ktgrok

ktgrok

Posted
Posted

Oh, Jenny! I'm so sorry you have to make these decisions, and face this. It sucks. You are facing crappy choices, and I'm not surprised none of the options feel good. Mainly as there are no good options, just less crappy ones. 

Also, DO let your anesthesiologist and anyone/everyone at the hospital know your fears. They can give you a pre-op medication earlier rather than later to help you feel a bit less scared. You're going to get meds anyway, might as well have them early enough to ease your mental distress. And stay on top of the pain in the recovery phase - there are no medals for using less meds and often using them hard and often early on and staying ahead of it means you are off them sooner - something about nerve cells once activated tend to take longer to calm down. They won't give you more than is safe, so ask for what you need, and if that makes you feel crummy or have side effects ask for something else or something to help with the side effects. 

And again, I'm sorry. We love you, and will all be thinking of you tomorrow, and will mourn your loss of the body you've known with you. Feel free to vent here as you go through this. We've got your back. 

  • Like 4
Link to comment
Share on other sites
TravelingChris

TravelingChris

Posted
Posted
21 minutes ago, Ktgrok said:

Oh, Jenny! I'm so sorry you have to make these decisions, and face this. It sucks. You are facing crappy choices, and I'm not surprised none of the options feel good. Mainly as there are no good options, just less crappy ones. 

Also, DO let your anesthesiologist and anyone/everyone at the hospital know your fears. They can give you a pre-op medication earlier rather than later to help you feel a bit less scared. You're going to get meds anyway, might as well have them early enough to ease your mental distress. And stay on top of the pain in the recovery phase - there are no medals for using less meds and often using them hard and often early on and staying ahead of it means you are off them sooner - something about nerve cells once activated tend to take longer to calm down. They won't give you more than is safe, so ask for what you need, and if that makes you feel crummy or have side effects ask for something else or something to help with the side effects. 

And again, I'm sorry. We love you, and will all be thinking of you tomorrow, and will mourn your loss of the body you've known with you. Feel free to vent here as you go through this. We've got your back. 

This. I remember they tried to do that for me before my second operation at 7 and it made me super hyper instead but did relieve my fears a lot,  So everyone has different pain levels, anxiety levels, etc and there is no one way to medically treat everyone.  So tell them if you are fearful, in pain, depressed, whatever,  

I think you are doing the right thing with the double mastectomy but your loss will be real.  I will be praying for you tomorrow and as I remember in the coming weeks for your recovery in every way, not just physically (my loss is part of my brain-  though no one cut that out).  

Hugs, hugs and more hugs.   

Link to comment
Share on other sites
Arcadia

Arcadia

Posted
Posted
9 hours ago, Jenny in Florida said:

This time, the cancer is causing me no symptoms, and when I come out the other side of this, I will have pain or discomfort I do not have now and my physical appearance will be permanently altered for the worse.


While my surgery was definitely less invasive, I felt similar about chemotherapy. I am waiting for blood tests results for four autoimmune tests that I did on Wednesday  (1 out of 5 tests results was ready the next day) because of joint pains and my molar chipped badly on Friday night so I would have a RCT done tomorrow.

The only advice I could give is voice your anxiety when you check in for your surgery. My anesthesiologist talked to me for 30mins after the nurse took my vitals and set up the drip. That was about 3hrs prior to surgery.  
Also, do not be afraid to sound like a hypochondriac. Let your medical care team know of any discomfort or side effects that you are not sure of. While the standin oncologist (while my oncologist was on leave) thought joint pains are a normal side effect, my oncologist would rather run the autoimmune blood tests as I had prior history of being evaluated for juvenile rheumatoid arthritis. I felt bad originally about “whining” over every side effect I have from the surgery and treatments but the medical staff reminded me that they need to know even if the pain level is only 2 out of 10. They need to know if I have bearable pain or no pain. So don’t feel bad “complaining” about any pain or other side effects like neuropathy. 
Feel free to vent.

Hugs.

  • Like 1
Link to comment
Share on other sites
Jenny in Florida

Jenny in Florida

Posted
  • Author
Posted
On 9/29/2019 at 1:41 PM, Æthelthryth the Texan said:

Again, I am sorry for what you are going through. I think it is among the most difficult things a woman can face. I hope you don't mind what I just posted and that is doesn't cause you more distress. I just wanted to let you know that it's beyond normal for what you are feeling right now. If you weren't feeling that, then that would be the concern. Hugs. 

 

Honestly, this was extremely helpful. It made me cry, but in a good, cathartic way. So, thank you.

  • Like 5
Link to comment
Share on other sites
Jenny in Florida

Jenny in Florida

Posted
  • Author
Posted

So, I woke up.

They apparently did remove some number of lymph nodes on the side with the cancer. So, we're waiting for the pathology report to know where we go from here, but we are now down to a "small chance" I will not need chemotherapy.

But I'm here. I'm sore and tired and feeling pretty sorry for myself, but I'm here.

  • Like 26
Link to comment
Share on other sites
Jenny in Florida

Jenny in Florida

Posted
  • Author
Posted
4 minutes ago, Arcadia said:

My lymph node pathology report took about 10 days to be released to my oncology surgeon. All the best and concentrate on recovering. Let everyone else help you.  Sleep as much as you need to. 

 

I've been told the report should be ready in about four days, in time for my follow-up with the surgeon on Monday. (Actually, my nurse navigator called today to check in and said she would call me as soon as she gets the alert that the pathology report is ready. She said she won't be able to give me a lot of detail, but she can at least give me a heads up about the results in general terms.)

I am trying to be good about focusing on recovery. So far today, my big accomplishments have been taking a shower, refilling the bird feeders and taking two naps.

  • Like 8
Link to comment
Share on other sites
Jenny in Florida

Jenny in Florida

Posted
  • Author
Posted
14 hours ago, Arctic Mama said:

How are you doing? I’ve been thinking about you the past few days and hoping everything went as smoothly as possible!

 

To be honest, I'm tired and sore, but trying to focus on feeling better. My husband has been really sweet about making time every morning to take the dog and me for a short walk before he leaves for work. Friends and family have been checking in via phone and text. Other than that and some light household stuff, I've been sleeping and binge re-watching 30 Rock. I'm bored and cranky but don't feel up to doing anything more.

  • Like 3
Link to comment
Share on other sites
  • 2 weeks later...
Jenny in Florida

Jenny in Florida

Posted
  • Author
Posted
40 minutes ago, Arcadia said:

Bumping because thinking of you and hoping your recovery is smooth and you have a wonderful weekend.

 

Thanks for thinking of me.

I realized I haven't updated since my follow-up on Monday. My daughter popped into town to see me for a couple of days, and I allowed myself a full day after she left to wallow and rest and recover. 

We did get the pathology report on Monday, however, and it wasn't great news. Three of the six lymph nodes they removed did show signs of cancer. So now it's on to the medical oncologist on Wednesday to see whether he thinks chemotherapy is appropriate. 

Other than that, I'm feeling pretty okay. I actually managed a half-day at a theme park while my daughter was here -- moving slowly and selecting rides very carefully and allowing myself the aforementioned day after to rest and recover. But I feel well enough (and bored enough) to be considering going back to work a week earlier than planned. At this point, I've decided to put off a decision about that until after I see the medical oncologist on Wednesday and do my second follow-up with the surgeon on Thursday (when I am hoping they will be able to remove the drains). 

I hope you are recovering and feeling well, too!

Link to comment
Share on other sites
mumto2

mumto2

Posted
Posted

I’m so glad your Dd was able to visit for a couple of days!  Glad your drains are due to come out soon as I know that was a boost to how my mom felt.  Hopefully you will be able to leave the oncologist’s office with a plan..........sending hugs.

Link to comment
Share on other sites
  • 2 weeks later...
Jenny in Florida

Jenny in Florida

Posted
  • Author
Posted

Just in case anyone is wondering:

I did get the drains removed at the second surgical follow-up, which greatly improved my quality of life. 

Both the medical oncologist and the surgeon's MA were concerned about the swelling in my legs and did both blood work and an ultrasound, all of which was unremarkable. I was prescribed diuretics, which seemed to do the trick. It's nice to see my ankles again.

The best news so far has been that I will not need chemotherapy. Apparently, the MammaPrint shows that adding chemo for my particular type of cancer would increase the long-term survival rate by only 1.5%, which is not even statistically significant. So, we're looking at 5-10 years of hormone therapy, but no regular chemo. 

I will be doing six weeks of radiation therapy, beginning in early December. 

In general, I'm still feeling more tired than usual, and my left arm is still tender to the touch in some places and numb in others. The chest and arm muscles on that side are sore, too, especially when I try to stretch or extend the arm. So driving tires me out more quickly than normal.

Because any potential reconstructive surgery would have to wait until after I finish radiation, anyway, I can use the next couple of months to ponder that question. In the meantime, I have made a few visits to the euphemistically named "spa" at the hospital's cancer center and been fitted with a combination of bras and breast forms that feel reasonably comfortable and should allow me to continue wearing most of my existing work wardrobe. 

I am scheduled to return to work on Monday, and the HR rep has already reached out to discuss the possibility of having me work remotely when necessary to ease me back into the swing of things. 

So, things are moving along.

  • Like 23
Link to comment
Share on other sites
Scarlett

Scarlett

Posted
Posted
5 hours ago, Jenny in Florida said:

Just in case anyone is wondering:

I did get the drains removed at the second surgical follow-up, which greatly improved my quality of life. 

Both the medical oncologist and the surgeon's MA were concerned about the swelling in my legs and did both blood work and an ultrasound, all of which was unremarkable. I was prescribed diuretics, which seemed to do the trick. It's nice to see my ankles again.

The best news so far has been that I will not need chemotherapy. Apparently, the MammaPrint shows that adding chemo for my particular type of cancer would increase the long-term survival rate by only 1.5%, which is not even statistically significant. So, we're looking at 5-10 years of hormone therapy, but no regular chemo. 

I will be doing six weeks of radiation therapy, beginning in early December. 

In general, I'm still feeling more tired than usual, and my left arm is still tender to the touch in some places and numb in others. The chest and arm muscles on that side are sore, too, especially when I try to stretch or extend the arm. So driving tires me out more quickly than normal.

Because any potential reconstructive surgery would have to wait until after I finish radiation, anyway, I can use the next couple of months to ponder that question. In the meantime, I have made a few visits to the euphemistically named "spa" at the hospital's cancer center and been fitted with a combination of bras and breast forms that feel reasonably comfortable and should allow me to continue wearing most of my existing work wardrobe. 

I am scheduled to return to work on Monday, and the HR rep has already reached out to discuss the possibility of having me work remotely when necessary to ease me back into the swing of things. 

So, things are moving along.

I think this is a great update!  Thank you for sharing and have a great weekend.  🙂

 

Link to comment
Share on other sites
Arcadia

Arcadia

Posted
Posted

I totally agree having the drains removed was great for ease of mobility.  

For radiation therapy, being there every weekday meant that the front desk checked me in as soon as they see me like more than 10 meters/ 3 feet away. The radiation staff were all very friendly and most are chirpy :)  Moisturize like you would for a bad sunburn and you should be okay. I was given a list of moisturizers that are safe to use and I went with Vaseline because I already have it at home. Aquaphor was also on the list and I would have used that if I had that at home as it worked great for my DS13 when he had flaky skin. 

I drank so much coffee and green tea that it might have indirectly cause my edema around my ankles to reduce fast 🤣

Thankfully you don’t need chemotherapy, so happy for you, less side effects to worry about. 👍

  • Like 1
Link to comment
Share on other sites
Jenny in Florida

Jenny in Florida

Posted
  • Author
Posted
1 hour ago, Arcadia said:

Moisturize like you would for a bad sunburn and you should be okay. I was given a list of moisturizers that are safe to use and I went with Vaseline because I already have it at home. Aquaphor was also on the list . . .

 

 

The info sheet from my radiation oncologist is very specific about recommending a combination of two moisturizers, first an aloe-based one and then something oily on top. It's on my to-do list to research the options and figure out which ones are cruelty free.

  • Like 1
Link to comment
Share on other sites
Arcadia

Arcadia

Posted
Posted

FYI: Breast Implants - Certain Labeling
Recommendations to Improve Patient
Communication
Draft Guidance for Industry and Food and Drug Administration Staff
DRAFT GUIDANCE
This draft guidance document is being distributed for comment purposes only.
Document issued on October 24, 2019.
https://www.fda.gov/media/131885/download

The related MarketWatch article: ‘I was not fully informed’ — FDA recommends breast implants with ‘black-box’ warning labels about potential hazards
https://on.mktw.net/2pdKwPF

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
 Share
Go to topic listing
×
×
  • Create New...