I feel like a deer in the headlights.....
Hello. I've been away a while. Had moved on with my life after having DCIS left in 2010 followed by IDC right in early 2011. Lumpectomy followed by rads for each diagnosis. Took Tamox for a year and a half. It drove me crazy so I stopped. Today I learned I have IDC in my left. It didn't show on mammo - even the one taken this week, I found the small lump. Had a core biopsy yesterday. Just sitting here stunned. My stomach hurts and I know I won't sleep knowing all the appointments, tests, surgeries and decision making that lies ahead. I'm terrified by the thought of chemo. I feel ashamed to say that having read so many of your brave stories here. Will want double mx. Wondering what options are since I've had radiation on both sides.... Plus first have to find out if it is anywhere else! Anyone else out there facing this right now or recently? I sure could use a big fat brave pill right now!
Comments
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Notagain, The weekend can be very slow and I didn't want you to go all night without someone replying to your post. I'm so sorry you're having to face this for the third time. Mammo also missed my lumps (5 in total) - I found them on my own.
I just want to offer you some support. I know how long nights can be when you're facing this stuff. Please keep in mind that many women tolerate chemo really well. Some even keep working and exercising all through treatment.
I just can't imagine how overwhelming this must be for you. Once the initial shock wears off, you'll do this one step at a time. There are many on BCO that will help you ALL through treatment. You are not alone. I will check-in throughout the weekend to check on you. We have a wonderful women on one of the threads that I post to that had a triple negative diagnosis in 1990. She had a new diagnosis in 2014 and is doing well. I hope others will be along to give you encouragement. Sending gentle hugs to you!!! Hang in there.
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NotAgain - so sorry to hear you are back. I too had a recurrence. It really turns your world upside down. I agree with your thoughts about a BMX. I too have been told that you can't have RADS more than once, but the protocols change every day so who knows You don't mention where you are located. You'll need to find a good MO that you trust if you don't already have one. Hopefully you're close enough to a National Cancer Center for a 2nd opinion. As Slow says, chemo isn't so bad in the scheme of things. And there are other drugs besides Tamox that you might find easier. Try not to let your fears run away - a REALLY hard job. There are lots of women here who have been very helpful all of us.
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Thank you both for your kind and encouraging replies. Slow, I will check out your blog and minustwo good suggestion about 2nd opinion. I know everything I am feeling others here have been through, and more, it is very comforting and gives strength. I hope your are both doing well. I gather they are waiting for more pathology results, they mentioned receptors, then I meet with my BS and talk about next steps.
My DH knows, I haven't told my family yet, need to pull myself together first so I can handle all the calls. I will get there.... Last time I hardly told anyone. Hardly anyone at work knew. The thought of having everyone know this time, they will write me off and think differently of me. Start to discount me, feel sorry for me. I hate that!!
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NotAgain I had hoped that not many would find out at my office, but its so hard to hide when you're going to so many appointments and your hair starts falling out. In the end, I'm glad that they did. Everyone was really supportive, and several women who had Breast cancer approached me as well with support. Yes, when I first discovered that I needed chemo, there were some concerns that I would not be able to handle my work, but I proved them wrong. I actually looked pretty good while being treated. I had a great wig, and the steroids they give you put color in my face
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Notagain, I just wanted to write and offer support. The hurry-up-and-wait aspect of cancer treatment is one of the hardest things to bear. I hope you get answers soon, and you'll probably feel better once you're on a path and the decisions have all been made. It looks as if you're really proactive about your health, and that should help.
For what it is worth, I learned that I didn't need to tell everyone as early as I thought I did. I told no-one except close family until I knew what the treatment was. And even then, I found that many people, i.e. the friends/acquaintances I don't see very often, just don't need to know. I'm always amused when I run into someone I don't see much and they compliment me on my hair! Which, I have to say, is much prettier than my real hair--I mean the wig.
I will say that nearly everyone who knows has been incredibly supportive. There are always a few people--the neediest in my circle--who make it all about them, and a few who couldn't handle it and have backed away, but in general I've been bowled over by the kindness of family and friends. Anyway, good luck with everything!
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Thinking of you Notagain!! Sending morning hugs.
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NotAgain, I am so sorry you are here again. If you have to do chemo, what I did was wear a wig until I was done with chemo, then I outed myself. Nobody could tell my wig wasn't my hair. I felt that by doing chemo with a wig, it made me feel more relaxed that everybody wasn't looking at me as a sick person and wondering if I could do my job. Then I switched to do rags/skull caps, and as soon as my hair was long enough, I quit everything.
As for telling people, I would wait until you are comfortable. Whether they know or not, your journey will be the same, and really, other people knowing doesn't help you. I didn't tell anybody except my husband, kids, and two friends until I was through a couple of rounds of chemo. What could they have done anyways? It is your journey to make, and others knowing doesn't impact that part of it, unless you need their emotional support. I found that once people knew, a lot of them either told me horror stories, or wanted to talk about their own health issues, both not helpful! Only you know when it is right to share with others.
Kbeee who is on the April 2015 chemo forum, recurred within 18 months after a double mastectomy, so she might be a good resource for you during this time.
Gentle hugs, and one day at a time!
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Thank you all for posting, your words of encouragement mean so much. Sounds like wigs may have improved.. That is encouraging! I just feel so numb - all the scary thoughts swirling around. I just want to sleep through the weekend and pretend this isn't happening. I know I will come out the other side.
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Hi Notagain, A few months ago we started a thread called Crazy Town. That's the place where most of us go when we are waiting on scan results or worry about progression. I'd like to invite you to join us there. There's almost always someone around when you need to get your crazy out. A wonderful group of women....all VERY supportive of each other. They are very funny too!! It helps to keep our minds off of worrying. We would all love if you joined us there!!
https://community.breastcancer.org/forum/84/topics/833500?page=108#idx_3228
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Notagain.. So sorry this has happened.. It's just not fair !! You know, as far as telling people it's an invidual decision.. We are all different.. the people we know are all different.. so I chose to tell some , not others.
Just know we are all with you, holding your hand , and someone is always here to chat with.. as you know., the waiting is the worse part.
(Hugs)
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Sorry you are facing this again. I went through chemo in 2013 and again in 2015. It is not fun, but it is doable. What you tell people is up to you. I have 3 kids... Teen/tween age, and they, their friends their sports teams, ..... Pretty much everyone knew. I was open both times. I did not find people felt sorry for me. They did rally around me though. 30 coworkers shaved their heads with me, lots of friends brought meals, etc. I am done now and am back to bringing meals to others, etc. I know others who pretty much told no one. once you have your plan, you will dig your heals in, grit your teeth and plow forward. Hoping all scans and such are clear. (((Hugs)))).
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I have to agree with only tell the people you are comfortable with and only when you are up to it. I basically hung up on my SIL more than once as she was just not someone I felt I could explain what was happening
Remember to visit Crazy town! .
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Or the Crazytowners may come visit you. (Crazytown's already arrived.....)
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Notagain,
So sorry you're making a return trip here. It sucks I know!This is my second go round also...with a 25 yr hiatus. I also told no one last time around, for work reasons and also people didn't talk about that stuff back in 1990. All my friends were having babies I was having cancer. I got an mx the first time no recon since I was given a poor prognosis at the time w/ triple neg and I figured why bother??? I had another mx last yr with a trip pos diagnosis I'll be done with herceptin in December.
I totally get all the things you were talking about. Not wanting to say anything, people feeling sorry for you etc. this time I have shared what's going on and I also cold capped this time so I kept my hair during chemo and actually had the choice of telling people or not which was very freeing and afforded me privacy.
My docs at UCSF suggested capping and it really worked well. You're in the right place here and I hope you'll come on over to Crazy Town and hang out. We have a great crew over there. Lots of support and understanding. Anyway I can help feel free to pm me or just catch up wandering the streets of CT.
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NotAgain - I'm sorry you're going through this again. I too am dealing with a recurrence/2nd cancer after 10 years from my original dx. The first time I was dx'd I was on vacation and called a close friend who was a coworker and asked her to spread the word. At the time, that was best for me and I wouldn't have to deal with telling people when I came back. This time, it's been different. I was dx'd in August after a ductal excision for nipple blood discharge. I told only a few people, and face to face. It slowly has spread at work, but I did it the way I wanted which was much different from the first time. I wanted some control over this.
I had partial (mammosite) radiation the first time and my surg onc asked my rad oncologist if he would consider reirradiating me. He said he would and that they have had good results. After thinking about it for a few weeks, I decided not to. Ive had 2 cancers already. I dont want to go through radiation again - so I'm going for a bilateral mx in December, but that's my personal decision.
As far as chemo goes - I haven't seen medical oncologist yet and won't until after surgery. I assumed I wouldn't because my tumor was 7mm, but reading other posts here, I'm not so sure. I'm nervous about it now. Guess I need to ask.
Hugs.
Beth
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Hi Beth,
Sure seems we are on a similar path - darn it. When is your surgery scheduled? Will you do recon? I have no idea yet what lies ahead. I assume they will want more tests to make sure this isn't also somewhere else, then surgery - I will want bi-lat also, then more decisions. I have had radiation to both sides. Wasn't sure if yours is same side or not? If this is your 2nd primary and it is small you might not need chemo. But then I didn't (wasn't recommended) and look at me now 5 yrs later.. You mention re-rad so I bet it is same side.
This is all so scary. It is 3am and I can't sleep. I haven't told family yet, I want to be over the initial shock before I do. Then hoping I can somehow hide all of these appointments from worK. Let's keep in touch..
Hi Sula,
Good to hear from you also, you have been through it all this year... Hope you are doing and feeling well. It is all in the rear view mirror for you now! That is encouraging about cold capping. I think losing our hair is so scary. We can't hide what we are going through once that happens. I will definitely reach out to you. Thanks so much for sharing. I have officially entered Crazy Town.
Hugs to you both!
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Notagain...soon sorry you are going through this again. I had chemo in 2004 and 2013. No, it's not fun but as so many said it is doable. I understand how you feel about not wanting anyone to feel sorry for you. I totally get it. But just know, I as well as others will be here for you. I also understand about not being able to sleep. A script for Ambien was written for me and it helped a lot.
I will keep in touch and feel free to PM if you want. I'm happy to answe any questions. We got you in our pockets.....
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Notagain- Big hug to you. I faced this beast for the second time exactly 1 year ago. My first BC was stage 1 left. Lumpectomy and RXs 2006. I really moved on and 8.5 years later a routine mammogram picked up Stage 2 in the other Breast. Frightening beyond believe. Chemo and MX this time. I refused RX again. We are here for you. This web site has been a lifeline. Hold your head high and surround yourself with only supportive people that will lift you up. You can get through this. I only told immediate family and very very close friends.
I agree with Rainny and Italychick. I only told people on the need to know basis. I live in a small community. If you need to do chemo I highly recommend you get ahold of LollysLocks.com. I qualified for a real human hair wig and it was identical to my real hair. Family sometimes forgot. My wig enabled me to feel normal on my worst days. I could go to the store and not be stared at. I am not a scarf or hat person. I am private and was an RN in a large medical center.
Please let me know how I can help. I faced my biggest fear: Chemo and I kicked cancer to the curb again..... Path after MX was clear except for tiny DCIS. Recon in progress.
You can do this!
Also I seriously was on Ativan for the first 2 months because I couldn't stop crying. Don't be afraid to ask for what you need. It helped me with sleeping too.
PMR53
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oh thank you for your response. Extremely helpful. Will look into lollyslocks. You describe exactly how I feel about this. Another mentioned cold capping which also sounds good but what if it doesn't work! You are all so wonderful. :
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I am about to start my second chemotherapy. I had chemo 6.5 years ago for left side triple negative. I didn't wear a wig then, just scarves or hats. This time, I ordered a human hair wig in a color and length very similar to my hair. The only difference is that the wig looks way nicer than my real hair. I am just going to tell people I had my hair color refreshed with a trim and style. I never talked about my original diagnosis with many people and plan to do the same this time. The wig was pretty expensive, but I believe my insurance will reimburse $500 of it.
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how expensive would you estimate. I have shoulder length hair Thanks for your response. I hope you are feeling ok. All so scary. I can only imagine facing chemo again!
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I just re-read Zayb you are just like me, first one side, then the other, now again. Hugs to you,hugs to us both. To all of us!
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Depends where you live. I did buy a human hair wig, and it was a huge help in finding my way to feeling normal (or "normal"). It was expensive, though I have not regretted spending the money. On the other hand, maybe the upper east side of Manhattan isn't the best place to find a bargain. Shop around and see what you can find online. If you don't live in an expensive coastal city, you might have better luck getting a decent price. If I'd had my wits about me and more time--neither of which was true in those first days after I was diagnosed--I might have gone to one of the Orthodox Jewish neighborhoods in the city to see if there were better bargains to be found.
There's a thread called "hair hair hair" where people share this sort of information in obsessive* detail--check it out! And the monthly chemo threads also are helpful.
*I mean obsessive in a good way!
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Rainny and Notagain - my Wig actually came from Shevys. It's actually located in Brooklyn. Google the site. They are beautiful human hair wigs. As I said before it was from LollysLocks. My insurance would not pay at all so I turned to them for help. I know this sounds cliche, most days I struggle to feel good. But BC gave me freedom. I was forced to leave a very full time stressful job. I left kicking and screaming. I thought it was the end of my life to quit. But guess what, I honestly believe the stress was killing me. I would never go back now. My husband and I tightened our belts and he has really supported me. It's been a rough road but doable. I made it through and so will you!!
Patty
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ZayB- I am sorry you are facing this again. It looks like you are Estrogen and Progesterone positive but Her2- I was triple positive this time and got chemo and MX. Only Lump and RX the first time. You are a brave fighter to face this again also. I was private first time and this time also. I refuse to let Cancer take over my whole life. Sometimes people mean well but that's all they want to talk about with you. I think you are worth the expensive wig!! Mine looked exactly like my hair on a good day. Please be gentle on yourself and we are here to support you !
Patty
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Notagain,
The wig I purchased was $850 (I was told this was essentially a discount rate since it was in a boutique catering to cancer patients). I am assuming I will get a chunk apof this reimbursed from insurance. I selected the wig at the boutique at Penn. It is a human hair wig and imgot to select style and then order it in the appropriate color. It should be here for pick up next week. When I go pick it up, I will be shown how to use it and it comes with a care kit, shampoo, stand, etc. It is nicer that my real hair, so I get why wigs are worn by people who have hair....what better way to avoid having to fix your hair every day than having a high quality well-styled wig!! I will probably get my wig trimmed and styled a bit once it arrives.
Notagian, yes, one side, then the other side , then they other side again! My breasts are equal opportunity. Since my last surgery was coded mod radical mastectomy/mastectomy completion, technically I have had three mastectomies...hoping number 3s the charm.
I started chemo yesterday and feel completely normal, waiting until tonight to administer neulasta. Neulasta always gave me the most side effects last time around so I am doing it before bed.
Yes, PMR I am 95% er and 50% PR, her2neg. Last time i was triple negative on the left side 0% 0% 0, high grade 333=9. It is more difficult to assess this new cancer because it was only in a single node. Consensus all around is that this is a completely new cancer, related to the dcis I had on my right side 5 years back, but it is a bit of a mystery.
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thanks Zayb and PMR for the wig info. I have scans this week on Tuesday. Chest, abdomen and head. Hoping for all clear. Scary!! If I'm clear, I may not need chemo, mine is so small. Came back er/or positive both 100% so back on tamoxifen I will go. Hoping and praying again this week!
Zayb giant hugs to you having just started chemo 11/5. Hope you faring well!!!
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Not Again, prayers for clear scans! You are HER 2 negative so you very well may not need Chemo!! Yeah. Did you have RX and LX before?
PMR53
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hi PMR,
Yes both on each side. First diagnosed DCIS on left had lump and rads, on next mammo, IDC on right, lump and rads.
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NotAgain
. I had my BC in January 2008. I had left breast masc, IDC in the left breast stage 2b. 7/24 lymph positive. Right breast DCIS. ( lumpectomy) I didn't have my nodes checked on that side. I guess ons surgeon assumed there was nothing.
I waited a year to remove right breast and do reconstruction of both at the same time. ( I wanted my skin to heal after rads on my left side,chest wall,nodes,
In October 2015, I went for my ultra sound.they saw a swollen lymph node under my right under arm. That day when I meet with my onc surgeon, he tells me he saw the film. And he didn't feel it was anything. He checked me and didn't feel anything at all. 2 weeks later I see my other onc surgeon and onc told them about the ultra sound ( at a different hospital) they both checked me and said nope nothing, see u in 6 months. Well Exactly 1 month later I get the dreaded call,it is after all cancer. In 2 lymph nodes.
Get a pet scan all clear except for 4 hot lymphs. , breast MRI can only detect 2 lymphs hot. Now the ALND, and so the actual numbers???? 16/37 !!!!!!! Damn!!!!!!
So now I started carbo/ taxol on jan 27, then taxol in between the 4 treatments of carbo/ taxol. I will be done these on March 30 and the taxol on April 13 or 14. Then 51/2 weeks of rads in May. The whole 9 yards
Onc has no idea where it came from either. He tells me I'm unusual , ( is it because he doesn't know where it came from). New or recurrence
I think that it came from my right side. I think that the lumpectomy was not clear margins and this sucker was dormant!!!! Oh I forgot to mention I was er+ pr+ Her2 - now he say I'm border line triple negative. I didn't know there were 3 sub groups in triple negative statud. ????!!
So I like u, I feel like I'm in limbo, like startrek , where no onc really knows lol
Gotta laugh
Positive thought coming ur way!
))🐛🌷butterfly
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