Help me understand what's going to happen

hikingandhorses

Countryheart - The anxiety you're feeling comes through your posts loud and clear. As I read what you're saying, I get the impression you want to take a step back, process what you're hearing from your professionals and sort through it first before you invite comments and suggestions. Did I get that right? Everyone posting here is right - their journey is their own and their case - however similar - is unique. But, I found that in my case, everyone around me was well-meaning and trying to be loving and supportive - even when they were offering success stories I didn't want to hear and giving advise I wasn't going to follow. When unsolicited advise was offered, I tried to keep the overall intention of it in my mind before I responded. ie "thank you for wanting to share your story - I appreciate your willingness to try to help but I'm trying to focus on what will be appropriate for me." My step-mom is on our local University hospital cancer board and was VERY upset I was not getting my treatment there. It took a bit of steadfast conversations between us before she accepted that I was getting treatment where I felt I needed to receive it. I considered any and all info thrown at me - I wanted to make sure I looked under every stone - before I committed to a course of action. So, even though you're getting info coming at you left and right - know that it's coming at you with love, support, and a strong desire to help you. Grain of salt and a tsp of sugar. Say thank you, and I love you, and I'll consider that or, can you hold that story? Right now I have a lot coming at me and I need to sort through it.

Along those lines, I found this site to be a WEALTH of information - I wrote down protocols people were on, researched clinical trials that were discussed and asked my oncologist about all of it. He took the time to look at everything with me (some of it he hadn't seen before) and give his reasoning for not doing it or why we should consider it an option. Unfortunately breast cancer is common and there are lots of us on this road - you're walking with all of us and looking at a long line of a cheering sections beside us. Just when you can't tolerate one more person "grabbing" at you to tell you their story, take a step back and think, "they love me and want to help" before you respond. And respond kindly - in the same spirit they're offering their advise/story.

Ropes-End

Countryheart, I see you got your voice. Kudos!! I hope you continue to speak it. This is your journey. Own it. One recommendation on your lists of questions (always question your medical team, you will be surprised) ask if there are alternative treatments with lesser side effects.

Courage to you.

Countryheart0122

UPDATE.... I did seek a second opinion at the NCI in Winston-Salem and have chosen to have any and all procedures and treatments there, my oncologist is amazing.... MRI results shows a lymph node that has doubled in size, biopsy scheduled for tomorrow, surgeon appointment is on Wednesday... MRI also confirmed the size to be 2.5cm vs ultrasound size of 1.7cm...

I_Spy

Thank GOD!!!!! You are in good hands.

Deaconlady

Countryheart, where are you going? I am in Winston-Salem and go to Wake Forest Baptist.

Countryheart0122

I'm going to both Wake Forest cancer center in Clemmons and Baptist in Winston-Salem... Dr Avery is my oncologist Dr McNatt is my surgeon... Because my mother doesn't know the history of her mother, I also don't have a relationship with my mother, Dr McNatt is thinking that I might have inherited a mutated gene that caused me to have breast cancer at such a young age, they are doing genetic testing on me to see if I carry that gene and those results will be back in 3 weeks, if I do carry that gene then that means the chance of cancer coming back (in the other breast or somewhere else in my body and or my ovaries) is increased up to a 85% chance.... If I don't have the gene then we are back to where we are today, if I do have that gene then the best way to prevent that from happening is to have a double mastectomy and remove my ovaries, the test results did come back on the lymph node that was tested on Monday and that was free of cancer, which is a good thing, but that doesn't mean that other lymph nodes are free, so whenever we decide what we're doing about this tumor in my breast they will also remove three or four lymph nodes just to make sure and all of that will be at least three weeks away at this point.... I forgot to mention that if I do have the double mastectomy then I won't have to do radiation and possibly no chemo, but I will have to take that the hormone blocker for the next ten years...

I_Spy

So glad you are at an NCI cancer center. You are in good hands, with a team working together to help you navigate this process.

Deaconlady

Countryheart, you are going to an awesome place. My MO is Dr Sorscher and Dr Levine was my surgeon. The staff at Clemmons are amazing! I had my Taxol and Herceptin there. You are in very good hands. Best of luck!

hikingandhorses

Countryheart - I was debating between a mastectomy and a lumpectomy when I was diagnosed. My oncologist (and others in my care team) said a mastectomy does not improve my chances of non-recurrence over a lumpectomy. Even with a mastectomy, cells can be left behind. Please discuss this with your team so you are fully informed. I don't want to wet blanket things but I was of the opinion to just do the mastectomy and be done with it and my team strongly encouraged me to consider a lumpectomy only - that my chances of recurrence were pretty much the same with both procedures. I'm glad you are where you are and that you're exploring all tests to help describe the full picture. Your genetic testing will also provide input into how receptive your body will be to medications. My health insurance did not support genetic testing so I did it on my own just to know. I think you're taking very practical and important steps in determining the best course for you!!

I_Spy

Every woman's cancer is different -- every woman. A doctor "strongly encouraging" one woman to only have a lumpectomy is meaningless. That cancer and that family history is a completely different cancer than someone else's cancer. Countryheart needs to take HER cancer and HER family history and HER gene mutation results into account and make an informed decision based on that and nothing else. In addition, the studies do not state that the chance of "recurrence" is the same -- so this is a game of telephone where the info from the doctor given to one woman is being repeated incorrectly to a different woman.

I had a lumpectomy first. I then chose a mastectomy when new growth occurred. However, my decisions are not relevant to countryheart and the decisions that she needs to make. The good news is that she is at an NCI Cancer Center with a team of doctors who will give her data, and she can make a decision based on that data.

Countryheart0122

actually receive the results to my genetic testing, came back negative I do not have the mutated Gene but now I feel more scared than ever because the decision was easy if I had the gene now I'm not sure what to do, I mean I'm grateful that I don't have the gene but now the question is try to shrink the tumor have a lumpectomy pray that it doesn't come back or do I do a mastectomy, this is killing me

I_Spy

Countryheart it was the hardest decision I have ever made in my life. Truly. I first chose a lumpectomy, and then later had a BMX. Just remember that no two cancers in two different women are alike -- they are like snowflakes: completely different. You can read about what other people considered when making the decision, but their actual decision is not relevant to you and your situation. Ultimately, you have to decide. When I was trying to make the decision, and after I had done so, I found some people on here to get pretty heated about forcing their own decisions on others; it was as if they needed reassurance that they had made the right decision by having me make the same decision. And yet, we are completely different people with completely different cancers. Here are the two things that helped me:

1. No one has a crystal ball. There is no way to be "sure" of your decision.

2. You are not deciding between Disneyland and Six Flags. Neither decision is going to make you go "woohoooo yay I'm so glad!" In either case you have to have surgery and treatment and doubt and confusion and unpleasantness. You can't do nothing; you have to do something, and neither one is going to be pleasant (but also remember it is your body; you don't "have to" do something because a doctor in a white coat tells you to -- do your research and make a choice based on all the data, including your doctor's opinion).

And finally, I am very happy with my decision. They found LCIS in my left breast that they didn't know was there (and may not have known was there until it was advanced; ILC is a silent killer cuz it doesn't show up on mammos well). But BMX and reconstruction is a brutal surgery, and you are not going to get "perky new boobs" (OMG if one more girl had said that to me I was gonna punch her). If you choose BMX, do it because you are trying to save your life and also save the chance of constant surveillance, recurrence, and biopsy after biopsy and always wondering and worrying. It is very difficult to make fake boobs (foobs) look as good as natural ones. Good enough, but not great. I don't have to wear a bra, they have a nice shape and I have cleavage, but reconstructed foobs are NOT anything like getting a boob job (do not let your friends who have had a boob job try to compare reconstruction to their boob job -- NO comparison). I'm happy with my reconstruction and I'm glad I did the BMX; but I also had realistic expectations.

You didn't mention your biopsy results I don't think.... Have they given you more data on what you have? What do your doctors suggest that you do?

Countryheart0122

The fine needle biopsy of one of my lymph nodes came back negative, it's do this and endure that, or do this and endure something else, or completely lose the sensation in your breast because you don't want to deal with this again, or do breast conservation surgery and take the chance of it coming back again so you don't lose the intimate feeling of being a woman by being able to feel your breast, but is that selfish because of course your life is more important than being able to feel but what if it's overreacting and it wasn't necessary to do one or the other...

I_Spy

Yay on the lymph nodes, but were they able to tell you what kind of cancer you have?

Meow13

countryheart, even if you do an mx, there is no guarantee it won't come back. I believe lumpectomy with radiation is about same as mx as far as recurrence. It is a horrible choice for us to make. We need better treatment.

I didn't really have a choice. I was told mx was necessary. I had DIEP and do have sensation in the reconstruction. I am 4 years out.

Meow13

They should be doing a sentinel node biopsy. They inject dye and find the correct node, I only had 2 nodes biopsied.

I_Spy

Lumpectomy is not the same as Mastectomy with regard to recurrence. That is an incorrect datum that gets passed around. The study showed that LX vs. Mastectomy had little change on survival rates. Meaning, if you are able to do close surveillance (you don't have dense breasts that make it hard to find cancer like I did), then if you have a local recurrence after LX they can find it and likely you will get the MX then to cut out the recurrence (and not die from it). If you are deciding between LX and MX you have to be prepared for vigilance to catch a recurrence. That is often why women (like me) choose BMX: I was tired of being a pincushion with constant biopsies and waiting for the other shoe to drop. If the cancer is in one spot and easy to cut out with clean margins, and you have non-dense breasts that pick up changes easily on mammo, it makes LX a nicer proposition.

Further, the studies that show little difference in survival rates between LX and MX do not take into account the type, size, or placement of the cancer. But most importantly, there is NO study saying that there is no difference between LX and MX when it comes to recurrence; we have got to stop saying that on this site -- it gets said a lot and then people pick up on it as true and repeat it.

Here is a fairly good article on it with some questions to ask yourself when choosing LX over MX:

http://health.usnews.com/health-news/patient-advice/articles/2015/01/13/mastectomy-vs-lumpectomy-for-early-breast-cancer-how-to-choose

hikingandhorses

http://www.health.harvard.edu/blog/for-early-breas...

ispy is right in two respects; the recurrence rate for lumpectomy versus mastectomy is slightly higher - but you have to consider the specific details of YOUR cancer to determine if the risks and procedures for both options are worth the few extra percentage points. The survival rate is the same. Distinguishing between the two (recurrence versus survival) can be a challenge. I had early stage breast cancer, no node involvement, dense breasts, ER+, HER2+ grade 3. My oncologist and I discussed treatment options at length. I was ready to just cut everything off and be done with it. The bottom line was if I would mentally feel "better" having my breasts removed - ie less worry.

There are women on this site that have chosen to have a mastectomy only to have the cancer return in their scar tissue. I strongly caution women against thinking a mastectomy is the cure-all - it's not. Weigh both options, discuss treatment protocols, discuss post treatment care and follow-up - all with YOUR cancer in mind - talk to everyone you can about it - THEN decide. MY choice, ultimately, was to have breast conserving surgery. You need to decide what you think is right for you.

Realize, though, your body developed cancer for a reason - SOME reason. Your body normally fights cancer cells that develop - this happens on a daily basis. Something happened within you that allowed this cancer to get out of control and start spreading. Along with the medical treatment you decide, you need to also consider lifestyle changes that may have contributed to your cancer. There are known factors that can be contributors to your disease - identifying these and addressing them will positively impact your outcome. Diet, stress, alcohol, physical activity etc all play a part. In my case, I'm a Class C contractor - I'm physically fit, compete in athletic races and am a vegetarian. However, I'm also a single parent and own my own business - two very stressful jobs. At the time my cancer developed - my daughter was hitting a tough teen time and parenting was a HUGE challenge, my business was running full steam ahead and I was struggling to keep up, and my parents were running into medical issues and needed my assistance on their farm. I was a clown twirling plates and the plates started to fall. The first one to fall was taking care of MYSELF and my stress level. The second plate to fall was my diet - just grabbing the easiest thing to eat because their wasn't time to make healthy meals - and so on.

Once you decide how you want to proceed with your medical care, consider asking your oncologist to help you find others that will help you with lifestyle changes that will support your decision. This is your journey. I can tell you what is on my journey but its what works for me and my specific case - but you need to choose what is right for you - at this point in time. There are no guarantees - you make the most informed decision you can - and accept the path you're on - and support your choice.

I_Spy

I chose breast conserving surgery too. That was my first choice, and I was very happy with it.

Until the cancer came back.

So yes, consider everything for yourself. It is the hardest decision you will ever make.

And for what it's worth, I think sometimes people get cancer just because they get cancer.... not because of anything else. A baby with leukemia did not get cancer from stress or drinking alcohol. So don't spend too much time worrying about that right now.

My decision for BMX was made very difficult by the postings on this website; strange, right? I even had to report a couple of people and go off the site for a while because of the strong words used by other "helpful people" who tried to get me NOT to have a BMX. I don't know why people get so adamant that someone make the same decision as they did. And you know what? If I hadn't had a BMX I probably would have died of the LCIS (progressing) that was in my "non-cancer" breast that had escaped all detection; my mother died at 53 of bc before we knew she had it, and I don't know what kind it was -- was it the silent killer ILC? Fortunately for me, I got an "aha!" moment afterwards where I KNEW I had made the right decision, when I got that pathology report and saw something we had no idea was there despite MRI's, repeated mammo's, six biopsies, etc. We don't always get that; sometimes, we just have to have faith that we made the right decision.

My breast surgeon told me my chance of recurrence after BMX was less than 1%; yours may be different. Trying to compare breast cancer and treatment is like trying to compare freckles. Your family history (regardless of gene mutation), your body, your cancer, your body image issues (or not), your plans, hopes, etc are different than any one else's on this site. I am not suggesting you have a BMX or a lumpectomy, because I have no idea what is the right decision for you.

Make a decision that is right for you and don't be swayed by anything anyone says on this site, including me.

I support you in your choice for a lumpectomy, or in your choice for a BMX. Whatever you decide is the right thing for you, is the right choice. I mean that -- I hope my words help you to decide on the right choice for YOU, whatever that is.

barnowl

This is my first post here. Just got registered this morning. I'm afraid my post is a downer so skip over if you want...

I was diagnosed in March with triple negative whatever, told on the phone by the pathologist that it was 'treatable', sent to a surgeon for removal of the 'teensy' item that had been found 'as early as possible', sent for MRI which revealed 5cm DCIS behind the teensy item, told it was treatable. Sent to oncologist. Told again, via that highly useful, highly fungible word, that it is 'treatable'. At intake was given all of that information (which I guess makes me an 'informed patient' in their world), at a well respected oncology center in Oregon....thrown into three stage chemo two days later. First session of 8 weeks/every two weeks; now in the midst of weekly 12 weeks series, then MRI to see if the DCIS has been shrunk (I guess) and then on to surgery and then tri-weekly infusion until next June. I don't know why. I have books. I have binders. I have piles of 8 1/2 X 11 info on specific chemo regimens I'm taken. The infusion teams are marvelous in their approaches and care. I have a NAV/NURSE whom I can ask anything for assistance in coordinating what I "need". I have no idea what I "need".

One of the chemos says it is used for metastisized breast cancer. I have never been told it had metastisized. Maybe that is a pro-active shotgun approach, going wide. I have my list of questions for the doc but don't even know if I want to ask them. I do not feel empowered by more information any more - just more overwhelmed by more evidence that there is no way for me to effectively participate in this process.

I'm overwhelmed. My nearby son at the moment has two jobs and is in the midst of moving as a result of divorce. I can't deal with talking with anybody even if someone was available to talk. This site is the first one I have dared to register at and try to read. I'm overwhelmed by what I'm reading.

I'm 72 years old. My immediate family is infested with cancer from top to bottom. I was the last of 7 seven siblings (and I am the youngest) to be diagnosed....none of the others made it past 65 without, in some cases, multiple diagnoses.

I finally got a mix of OTC sleep aid stuff, along with Lorazapam, working right last night to get adequate sleep for the first time in weeks. I'm exhausted.

I'm nervous to post this but the quality of what I've read here this morning by both contributors and moderators made me dare.

I'm sorry to be such a Debbie Downer. CountryHeart's report, from the beginning, feels so much like what I've been doing. (Including the comments of well-meaning people: my neighbor's one and only response was - "Oh! Easy peasy! They will do a lumpectomy and you might have a little bit of radiation, and you're all done in six weeks." Or not.) It keeps unfolding, unfolding, unfolding. Nothing is ever conclusive, so you keep showing up where you're told to show up at such-and-such a time to have things done to you and then you go home until the next time you're supposed to show up.

My husband died 2 1/2 years ago from liver cancer two years after we moved from a distant state in order to be nearer our son. Never smoked or drank or used drugs. We had four months' notice. He lived ten weeks to the day from the day they told us that he had 9-12 months. I was his 24/7 support and he was mine. It was amazing and good. He was dressed every day to the end, doing little jobs in the garage and yard, died in my arms when he collapsed in the hall on the way back from the bathroom on the very first day he had used the walker for support.

Moderators

Dear barnowl, We wish you a warm welcome. We are so sorry for all that you are dealing with and have had to deal with but so glad that you took a chance and reached out to our community. It is very hard to manage breast cancer on one's own. We are sure that you will some support from others' shared experiences here in the community. May we suggest that you consider browsing the Triple Negative Forum and perhaps posting there. Either find a topic that suits you or create a new topc. The reason we suggest this is because this particular forum is for those who are not yet diagnosed but worried and we think that you will find more support with those who have already been diagnosed with Triple Negative Breast Cancer. Let us know via PM if you need help. The MOds

Countryheart0122

I've been really busy, not only with work but trying to get my life situated before my surgery.... I've also had genetic testing (don't know anything about my mother's side) those results came back negative.... I've met with my surgeon again and have decided to do a mastectomy with a DIEP flap procedure, as long as my lymph nodes are free of cancer, I should be good to go, Tamoxifen for the next ten years... I want to thank all of you for information and advice and support.... I will be back with updates when I can..... Surgery looks like to be middle of August...

dtad

IMO its not an accurate statement to say the local recurrence rate is the same with lumpectomy and mastectomy. Obviously the more breast tissue you have the higher the incidence. My MO told me my local recurrence rate is between 1-2 percent. I honestly don't know what the lumpectomy local recurrence rate is but it has to be higher. However, survival rates are about the same. We all have to make our own informed decisions. Good luck to all

Countryheart0122

I had skin-sparing mastectomy last week on the 18th today the 26th I go in to have my drain removed and go over the pathology report, in the beginning I was told the lymph nodes were clear, Sentinel node biopsy was also free of cancer.. Cancer was contained inside the breast, no spreading...initial biopsy showed I was ER PR positive her2 negative... I'm walking into the cancer center today fearing the removal of my drain because I was convinced but it was going to hurt but instead I got punched in the gut and didn't even feel the drain because I was told I was triple negative and that my port placement needed to be scheduled... I think I'm still in shock I feel like I have been diagnosed all over again instead of not having to worry about chemo and radiation, and just remove the whole breast reconstructive surgery tamoxifen next 10 years do your regular check-up you're good to go, all of a sudden my world is turned upside down again, will it ever stop?

Meow13

barnowl,

I just threw that stack of paper in the closet. I know that feeling of being overwhelmed by information.

You have been through so much, take the lorazapam and rest. I hope your treatment is doable with little side effects. Stress is terrible and is the reason I got my cancer. You can always find comfort and support on this site.

I was afriad of chemo and just couldnt bare the thought of losing my hair because of this site I learned of cold capping. If I need to face chemo in the future, I am cold capping and I dont care what my mo says or if he thinks I'm vain.

One thing that helped me get thru was the thought I'm in control and won't be forced into treatment. I make the decisions.

marie5890

CountryHeart that is a kick in the gut. More like a wrecking ball in the gut. I am sorry.

I know that there are several support groups for TNBC, including on FB. Get some rest, if that is all possible. We know this is tough.

I_Spy

Countryheart....

Kick in the gut. I'm so sorry.

I don't suppose you want any "silver lining" crap right now, either. Just in case you do (and if you don't, read this later):

You're in a great place to get great treatment from the best. They found it, identified it, and they will treat it. You're in good hands. By doing the BMX they got all of the breast tissue that had cancer in it (if you had gotten just the LX and then got this news, would you be reconsidering your decision while getting your port placed? Obviously TNBC is nothing to mess with and a doctor saying "I got clean margins on that LX" might not be that reassuring).

But again, this just sucks and there is no way around it. I've had a lot of medical issues (frankly, more than most do in a lifetime -- way more than the bc listed in my signature) and the ONLY thing that gets me through sometimes is this ridiculous platitude: "You play the cards you're dealt." Stupid, but it works for me so you may borrow it if it helps.

Countryheart0122

Okay I know I haven't been on here in a while, the update with me is the test results came back and I am not triple negative but due to the size of the tumor they are recommending that I take 4 rounds of chemo one every 3 weeks the drugs that they are using it cytoxan and taxotere my concern is I have seen the lawsuits pertaining to taxotere where patients aren't informed that there possibly could be permanent hair loss is this something I should be concerned about?

hikingandhorses

All drugs have side effects that you have to be informed about and ready to deal with. I had taxotere and regrew my head hair right away - the only place I've noticed thinning are my eyebrows. I wish it would have arrested my chin hair!! I had weekly infusions for 6 months. You're getting 4 rounds. I think your odds of reduced side effects may be better but it's worth researching to see exactly how many patients out of 100 are experiencing permanent hair loss.

Ladyzana

Urgent. Need answer quick. Two more days!

Hi. I am having excisional biopsy on Monday Oct 3rd and I am scared. They are also running a wire with a local. They already did a needle biopsy (3 weeks ago) and removed a calcification that showed both ADH and FEA. While they tell me they are expecting to find nothing, they want to rule out any cancer in the formation stage or hiding. It has taken me this long to wrap my head around everything.

I guess I am more scared of the pain than anything right now. The local for the needle biopsy was horrible! I don't know what to expect with this local. Can anyone elaborate? I want to be mentally prepared. This has been the summer from hell! I am trying to be prepared for the worst.

I am sure many think I am a big wimp! I know the surgery will be a needed nap. I just don't want to do this, but it is scheduled and I am going. I would like to catch anything before it causes other problems.

The other women on here are very brave. I am a wimp at 51 and very very scared. Please tell me honestly what to expect as soon as you can.