New, Would Love to Hear from Others in 30’s/40’s & Survivors
Hi everyone,
So what I thought would never happen to me has happened to me when I found a lump in my breast several weeks ago and it turned out to be cancer. I'm 43 with no family history of breast cancer, and now my husband and I trying to stay positive while going through all the emotions and anxiety of this, it's really does put the brakes on all your life plans because we were just considering deeper fertility options when this happened.
I did the lumpectomy and it came back with mixed news. Good news is that the margins are clear and tumor size ended up less than what they measured during the initial ultrasound, mammogram and biopsy - they thought it was over 2cm and it turned out to be 1.8cm. So either the tumor shrunk or it was just smaller than they thought! Bad news is that it's in 2 out of 2 lymph nodes (sentinel biopsy only removed 2). So all my hopes of treating this with the surgery and radiation but no chemo has possibly gone out the window, I'm now scheduled to do bone scans and CT scans next week which have me really anxious that this might even be worse than the current stage 2 breast cancer they think it is, and I'm very wary of chemo treatments and side effects and risk of chemo causing secondary cancers.
Also, at 43, I still feel relatively “young" to be going through all this.
Is there anyone else going through or who went through this around my age? Anyone with similar cancers (ER+/PR+/HER-, less than 2cm, in lymph nodes) and did you need to do chemo or not and how have you been managing? Any advice for going into bone scans and CT scans? I even have concern there re: all the radiation they blast you with in those scans. Anyone who considered/tried/know people who did alternative treatments and results there?
I'm new to all this and greatly appreciate any insight, advice, similar stories, and any and all stories from the survivors who have beat this. Thank you!
Comments
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I think I accidentally deleted my post (I’m new to this!) so here it is again... would love to hear from survivors of all ages and anyone going through this in their 30’s and 40’s too, similar to me...
So what I thought would never happen to me has happened to me when I found a lump in my breast several weeks ago and it turned out to be cancer. I'm 43 with no family history of breast cancer, and now my husband and I trying to stay positive while going through all the emotions and anxiety of this, it's really does put the brakes on all your life plans because we were just considering deeper fertility options when this happened.
I did the lumpectomy and it came back with mixed news. Good news is that the margins are clear and tumor size ended up less than what they measured during the initial ultrasound, mammogram and biopsy - they thought it was over 2cm and it turned out to be 1.8cm. So either the tumor shrunk or it was just smaller than they thought! Bad news is that it's in 2 out of 2 lymph nodes (sentinel biopsy only removed 2). So all my hopes of treating this with the surgery and radiation but no chemo has possibly gone out the window, I'm now scheduled to do bone scans and CT scans next week which have me really anxious that this might even be worse than the current stage 2 breast cancer they think it is, and I'm very wary of chemo treatments and side effects and risk of chemo causing secondary cancers.
Also, at 43, I still feel relatively "young" to be going through all this.
Is there anyone else going through or who went through this around my age? Anyone with similar cancers (ER+/PR+/HER-, less than 2cm, in lymph nodes) and did you need to do chemo or not and how have you been managing? Any advice for going into bone scans and CT scans? I even have concern there re: all the radiation they blast you with in those scans. Anyone who considered/tried/know people who did alternative treatments and results there?
I'm new to all this and greatly appreciate any insight, advice, similar stories, and any and all stories from the survivors who have beat this. Thank you!
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Sent you a private message ☺️
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started at 38. I am now 58 and still very active. At my point now I manage side effects.
They are much further along now than they were when I started.
God bless and good luc
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Hi Pebbles, sorry you find yourself here! I was 45 when diagnosed, healthy etc etc. It's been more than two years and I can say that while the whole experience changed me physically and mentally, I am not consumed by fear as I was in the first year after diagnosis. It's so hard to live in the unknowns that testing and surgeries and treatments bring. But eventually you do get through and it's in the rear view mirror. And sure I look back there, but I'm also watching the road and taking in the sights. Good luck to you as you go through the hardest part.
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Susan3, what treatments have you used
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Thank you so much for the responses and uplifting words (and also thank you to those who have messaged me personally). It is SOooo helpful to hear from others who were diagnosed at a similar age and you made it through. @Falconer I'm impressed with your spiritual growth and hope that one day I can arrive there too - right now, I'm trying to be positive but I'm honestly pretty anxious, nervous that CT and bone scans might reveal something else. But like you said, one day at a time, and today is good...
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Hi pebbles,
I turned 43 last month, and was diagnosed with BC in March this year. It was a shock, followed by a roller coaster of emotions for awhile, then a marathon of surgery/chemo/more surgery. I feel for you as you go through this stage, I think that it can be the absolute worst with all of the waiting and uncertainty. Sending you healing thoughts
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Hi Pebbles. I was diagnosed July 2017 at age 42. I had 2 tumors, both under 2 CM, but no lymph nodes. It's been over a year, and while side effects from medications aren't fun, I'm adapting to my new normal. I was told "no chemo" (but the doctors had some disagreement about that), but I am doing Zoladex to put me into menopause and taking an AI. It's a crazy ride. Definitely not where I thought I'd be. But I look to all of those who are so far out from diagnosis, and I can only home that'll be me someday. One step at a time, but so far, 1 year NED.
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@wink22 - comforting to know we’re going through this together. Thank you for the healing thoughts and sending them your way as well!
@justbeatgeno - congrats on being a year out, I’m just starting to discover this thing called “the new normal” now...
I find out a lot more this week so... trying so stay optimistic...
In the meantime, wondering if people take time off work or continue working through this? My company is letting me be flexible - take time off or work from home or maybe do a mix of both - and I’m weighing what’s best for me..
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Pebbles. I have been off work a year. Looking back I could have definitely worked through parts of my treatment. And I think that would have been a nice distraction. I go back to work half time in November. A year and two months after diagnosis
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Re: Work. When I was diagnosed, I already worked part-time and flexible hours. So I continued to work, but really it was quite minimal. I spent about 20 hours a day googling (not that I suggest that, but I wanted to stay one step ahead of my doctors). I started on Zoladex and Tamoxifen in October and took a major promotion to a full-time very intense role Jan 1. THAT WAS SO STUPID! LOL. In hindsight, for me (not having done chemo), I felt a lot worse after "active" treatment, as my adrenaline started to wear off, than I did during active treatment. I understand, now, this is quite common. All of this is to say, your ride through this isn't necessarily done in a month, or two, or three. So, you might want to discuss with your employer that adjusting to this place in life could take awhile.
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Hi PebblesV, just chiming in as someone else who feels "young" to be going through this. I am 42 and was diagnosed in July of this year. Like you, I thought I would have surgery only and maybe hormone therapy as I was originally dx'd as 1A until they found a ton of positive lymph nodes during surgery. So now I am getting the full monty of treatment - chemo, rads then hormone therapy (and am also looking at a clinical trial to add a cdk4/6 inhibitor). I've only been through one round of chemo at this point, but BY FAR the worst part of this process for me was waiting for the bone and CT scan and results. I honestly wondered how I was going to get through it. Luckily they came back clear, but no matter what, I think once you have results you can start planning treatment and next steps. I find it so much easier to be doing something rather than waiting for things that are so out of my control.
Workwise, if you like your job well enough and they are flexible, that is a great place to be. I am working through out of financial necessity, but my workplace has also been quite flexible about taking time off and working from home. I took a week off following my first AC with the idea that I could take less time for the next ones if it ended up being easy side effect-wise. It didn't (though not terrible either) so I will continue to take the treatment week off for the next 3 rounds. To my surprise, I really enjoyed going back to work afterwards. It was just nice to feel normal and do something non-cancer related.
Sending you lots of support and comfort while you wait for those results. These boards have been amazing for me, so I hope they are a help to you, too. Good luck with what comes next!
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Hi PebblesV,
I am 46 and was diagnosed in July (at 45). My situation is a little different (no positive lymph nodes), so I can't speak to what it might be to work during chemotherapy. Although my mother (diagnosed 15 years ago and doing fine!) had chemo, and mostly worked--took over a couple of days after each treatment. But I can tell you that I worked throughout my radiation treatment (just finished a week ago--hooray!), and that was fine. I have my appt. first thing in the morning, and then headed into work. I do have a flexible job, so the last couple of weeks when more fatigue hit, it was ok to leave early and rest/nap mid-afternoon. I found being at work a nice distraction, and I have great co-workers, so it was good to be around them and their support.
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Hi everyone - thank you for all the responses. Encouraging to know others continued to work through this. My boss is letting me be flexible and will accommodate to what I decide to do - whether it's take time off, continue to work but sometimes from home, or some mix thereof. I'm leaning towards the mix - maybe 3 days on, 2 days off. And if I have to do chemo, more work from home since I hear it makes people susceptible to infections.
I'm trying to have this shocker of a thing have as little impact to my normal life as possible, and then keep realizing how difficult that is. But if I want to maintain some semblance of that, I think it will help to keep working a little, also as someone mentioned, it's a good distraction.
@beeline - our situations are SOooo similar. I just had CT and bone scans done Weds. and Thurs. this week and it's driving me crazy waiting for results. How long did it take you to get results? Also I'm waiting for the Oncotype DX score, but as cancer is/was also in my lymph nodes, it seems pretty likely the oncologist would recommend chemo. And I'm so wary of the side effects... how are you managing it?
All ladies - the fertility factor is a big deal too for our age group. Our oncologist said it was OK to wait a couple months before chemo and even blast my body full of hormones to retrieve some eggs, so we are going to do that. To think it might be the only chance my husband and I have now to have kids because chemo and tamoxifen would basically make me infertile... I can't even...
Trying to be brave and keep my head up but just being hit with all these things, it feels unreal.
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I am 52, actually 2 months and a couple of weeks till I'm turning 53. Oh but don't tell me I'm not qualified to post here because I was 39 when I was dx'd with stage IIb IDC. My tumor was measured 3.5 cm and 2 nodes came back positive. I started 12 x weekly Taxol immediately after my dx followed by 4 x every other week AC. By the time I completed chemo, my tumor got shrunk to less than 2 cm so I had lumpectomy. Then after that, I started taking Tamox and had another 12 x weekly Taxol followed by rads. It took a year and 2 months to complete all the active treatments (except Tamox) and I didn't take a single day off from work except when I was hospitalized for lumpectomy for 5 days. I did all my Taxol on Saturdays and I only had to be late for work when doing rads. It wasn't easy especially when I was doing AC which gave me horrible nausea but I managed to make it through.
That said, you really shouldn't push yourself too hard. I would have taken a couple of months off and wouldn't have been back working till the end of chemo if I had been able to get financial support from elsewhere to make ends. I was (still am) single and while 2/3 of my medical bills were covered by insurance, I still had to pay for the rest out of my pocket and there were a lot other things to pay for like the rent, food etc.
Allow yourself to accept as many offers of help/support/kindness as you can get and be as gentle to yourself as you can. Just because you accept the kind offers doesn't make you a selfish person. You can repay the kindness when you are ready.
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Nowhere girl...how did you decide to do 12 more weekly Taxols? So fascinating!
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Hi PreludeSing,
After lumpectomy, my onc told me that he would want to put me on another 12 x Taxol but also told me that it's 100% up to me and I could skip it if I didn't want. I knew he wanted it because of the original size of my tumor and the lymph node involvement, plus the fact that I was relatively young so I opted for it. Honestly though, I might have skipped it if I had got serious side effects from the first 12 x Taxol but luckily I didn't except for the hair loss so it wasn't really a tough decision. I ended up getting swelling in my feel from the next 12 x Taxol to the point where my shoe size went up to 9.5 from 7.5 but it eventually went away.
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nowhere girl - you are an inspiration! Thank you so much for posting here. I’m so glad to know you continued to work through your entire chemo regime. My oncologist is recommending similar AC for 12 weeks followed by 12 weeks taxol which seems like an awful lot - would be 6 months total. I feel like I have to do it if it’s needed but I’m SOooo afraid of side effects. I’ve seen people land in then hospital after their first session, heard you can’t go anywher the week after infusion b/c the white blood cell count is ridiculously low, etc. Is that true? I intend to keep workin...
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Hi PebblesV,
Were people you've seen doing chemo for breast cancer? Before I started chemo, I thought that there was no way I could keep working while on chemo. Actually I didn't even know that chemo could be done without being hospitalized because every single person I had seen on TV or in movies were so sick, awfully pale and skinny. I asked my onc and he explained that chemo regimes for breast cancer were nowhere near as intensive as the ones for leukemia or brain cancer.
That said, just because two people do exact the same regime doesn't mean they react to the chemo drugs exact the same way. Everyone is different. Luckily my white blood cells appeared to be amazingly tough so I didn't even need to get a shot to boost the count. You may have to skip a session or two due to the low count, or feel too weak or sick but you never know what may or may not happen, right? Personally I don't think you have to give up on working before anything happens. Just make your work aware that there is a possibility you will have to take sick leave. Until shit happens, do whatever you want to do is my golden rule.
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First of all, I just quoted your golden rule to my husband. We LOVE it!
I might just have difficult references. We watched my mother-in-law go through chemo for lung cancer and she landed in the hospital 3 out of 4 times due to low WBC one time, low RBC another, etc. Another person I met at a party who had been through breast cancer and triumphed with grace and a sense of humor still shared that after the first chemo session, she landed in the hospital. Granted, both examples were much older, but still...
I did meet a friend of a friend today who had a similar type of breast cancer, and similar age (45) and got through chemo with some side effects but really no life-threatening complications. So the more I can find examples of people like her, and you, the more re-assuring it is.
I do intend to work through this, my workplace is luckily being really flexible and understanding. I can work from home or take time off or some combination thereof, so going to try!
Still have not heard anything on oncotype DX and other results, probably will next week. Waiting is the worst.
Pebbles
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Thanks for sharing nowheregirl...my onc never offered me an extra 12 taxol (I tolerated it well)...
I am so glad you had the opportunity! Did you have radiation after your lumpectomy as well?
Thank you for sharing!!
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- Hi everyone - just wanted to post an update. Bone and CT scans are clear, whew! That’s the biggest relief of all and waiting for that was probably the most anxious I’ve ever been. And I got my oncotype DX score and it’s 21. It predicts a risk of recurrence with tamoxifen alone and with tamoxifen plus chemo and for me, the percentages on either therapy are EXACTLY THE SAME. So now my husband and I are wondering if there’s no benefit to chemo, is it worth the potential side effects to do it? Don’t know what the onc thinks yet, probably leaning towards no chemo... any opinions? I’d still do radiation and the tamoxifen which come with their own set of side effects...
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I was 35 when I was diagnosed 3 years ago.
I did 6 rounds of chemo, Herceptin, radiation, mastectomy. I don't notice any lasting side effects now. It's doable!
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Hi Pebbles, I am 40 and 2 months after my bday, I went through the ordeal of mammo, biopsy, MRI when the roller coaster ride started. Based on current status lymph nodes are not affected. It is ER/PR+ and Her2-. Genetic tests came -ve too. But onco came 41 and my 'no chemo' wish was destroyed. I have to take chemo first as the tumor is near chest wall, so they want to shrink it before surgery. No breast cancer history in family and none of the ladies/girls that I have known in my whole life have BC (I hope no one has to go through this). It was definitely a shock and our fear for the word 'cancer' makes it worst. But take one day at a time, one test result at a time and keep as much positive attitude as you can (easier said than done!). I am done with round1 of TC chemo and have to go through 3 more rounds. Then have to decide which type of surgery I want. Even now I go through cycles when sometimes I feel I can do it and sometimes I just feel sad that it happened to me. But my husband and family, friends are very supportive without whom this would not have been possible. I have continued the work, but take off in the week of chemo and next few days I work from home. I count my blessings that they are flexible with this. It is another story that the company got taken over and soon I might be out of job, but now I am giving health the most priority and will search opportunities once I am through all this.
Wishing you the strength and resilience as you move forward in this process. It is already good that your bone/CT scan came clear. The path will get clear as you take each step. This board is amazing. Ladies here that go through this come out stronger and every word from each one offers great support and guidance. We all are in it together and have faith to meet on the other side. Take care.
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nowheregirl:
My great aunt also worked during chemo for breast cancer. And here I am three days out from my 6th TCHP infusion and doubled over with stomach cramps in bed. I felt fine when I got up and was going to walk down to the drug store to get Tylenol for my dad and suddenly the chemo cramps hit and I had to abort my mission. I wish I knew how you ladies managed to hold up so well!
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Hi all of you lovely ladies,
Pebbles, hooray for clear scans! The letter "C" is not always so bad, right? I don't know much about Oncotype DX as it became available only a year before my DX so it wasn't really popular back then. What is your grade? I guess your onc may still want you to have chemo if your grade is high. When I got all my test results, I was told to come back 3 days later to have my first chemo (Taxol). As much as I was scared, I didn't even think about avoiding it as I was determined to do whatever was thrown at me. Trust me, it was NOT because I was strong. It's completely opposite. I just didn't want to miss out on anything that had potential to get rid of this rotten disease because of "what if"s" that I didn't even know would happen. Like I said, until shit happens.
PreludeSing, yep I did rads. 30 rounds of them. Luckily I had almost no s/e's. Quite a few ladies here recommended me to apply aloe vera gel and even sent me some they got from CVS by mail as I couldn't find an organic one here. Thanks for them, I didn't even get my skin dry.
WC3, don't you ever be disappointed, OK? Just because you got sick doesn't make you a weak person. You ARE fighting right now. There is absolute no warrior that doesn't need or take a break. And your chemo cocktail appears to be a lot tougher than what I did. Take as much rest as you need. Your mission is to kick this stupid disease's ass. Anything else is not important at the moment. Yes, there are a lot other things that are important to you and hell I do know how much you miss doing those things. But you know it's not permanent. It's just that you have a table full of dishes and you are eating from the one that you least like. The best dish feels the best when it's left for the last, right? Hang in there, you will sure get through this.
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@kimm992 - it's great to see examples like you that got through everything smoothly! Congrats on being 3 years out.
@beingpositi - my heart is with you, my friend also told me “welcome to your 40's" and I guess these are the things we deal with in our 40's, you are not alone. My husband has been my mainstay and it's so nice you have your husband and other support around you too! It sounds like you and I are both one day at a time and trying to keep as much a semblance of our “normal" lives while we fight and deal with this. I'm continuing to work through this too, and while I'm doing what's needed and feels right from a medical standpoint, I've also revamped my diet based on what I'm learning helps or hurts breast cancer. I found a great site foodforbreastcancer.org and have (for now) cut dairy, red meat and processed foods, eating more fruits and veggies and still fish. Looking forward to sharing our stories WHEN we've got this beat!
@nowheregirl - I'm stage 2A, the oncotype DX thing is useful for those with a tumor less then 2cm (mine was 1.8cm), cancer in less than 4 lymph nodes (I had 2), ER+/PR+/HER2- from what I understand. They did a pretty massive study where women with similar cancers did just hormone therapy (tamoxifen) or hormone therapy plus chemo and whether the cancer came back in 5-10 years. They found that with higher oncotype scores, women benefitted from chemo, and lower oncotype scores it was the opposite - the women who did just tamoxifen and no chemo fared better than the ones who did chemo. I think it has to do with how well the type of cancer responds to estrogen blocking treatment, lower oncotypes are more estrogen fueled and respond better, something like that.
SO for me, turns out my oncotype of 21 means that I would have the same risk of recurrence whether I do chemo or not (13%). So the oncologist said he could NOT recommend chemo in my case as it would not have any benefit beyond hormone therapy alone. So my next steps are radiation (starting Monday!) and then I start the tamoxifen after radiation is done.
Any advice on radiation and how to avoid any side effects there?
I'm feeling good about this plan, I feel between the surgery to get the tumor out, radiation to get at anything that might have been left in the breast or lymph nodes, the hormone therapy for the “systemic treatment" and the nutrition changes I'm making (I've lost close to 20 lbs these past 3 months!) I can have this beat. I learned later that my Grandpa had breast cancer, did the surgery, radiation and tamoxifen and licked the cancer, it never came back.
And I'm continuing to work through the treatment! Just working from home. Which the puppies have really enjoyed
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Pebbles, thank you for starting this thread. I'm 42 and I was diagnosed in late August. No family history for me either, so it seems out of nowhere and it's been a roller coaster of emotions. I had a lumpectomy and port insertion on 10/10 and am scheduled to start weekly taxol on 11/13 (eek!) with radiation to follow. I haven't met with the RO, but that's going to be happening in the next few weeks as well.
I'm still slowly telling friends, but one of them gave me a a batch of notebooks, fun pens and a big calendar, which I think might be the perfect gift. I now keep one of those notebooks in my purse at all times just in case some question or need pops in my head - which is how I showed up to my chemo education meeting with the NP with 6 pages of questions last week.
I'm planning to keep working - my office knows and my boss is a bc survivor (although no chemo for her) so it looks like I'll have a lot of flexibility about working from home. I'll guess we'll see though. -
@casualbooknerd - of course! Welcome to our thread, and the goal of keeping to our normal lives as much as possible while we fight this. I was encouraged by so many others who are also still working through treatment and I’m doing the same. I’m going through daily radiation right now and my boss is letting me work from home during, and I’m also taking one day a week off because I realized I need that for myself, and to focus on healing.
I was researching a lot of ways to get through chemo with little to no side effects and my Dad is a doctor so here’s info I can pass along to hopefully help you. Based on my oncotype DX score of 21 I no longer need chemo (I had a score that said the cure rate was the same whether I did chemo or not vs just hormone therapy) but here’s what I found:
1. Penguin caps have been most effective for helping some women keep their hair. They claim 80% success rate, doesn’t work for all, but if it matters to you, worth trying.
2. The oncologist was going to prescribe GCSF (white blood cell booster I think) for me during chemo if I needed chemo, my Dad who has treated a lot of cancer patients insisted on it. Helps keep the immune system up.
3. I found this thread super useful, posted by someone who sailed through chemo with minimal side effects:
https://community.breastcancer.org/forum/69/topics/839070?page=3#idx_71
I too had pages and pages of questions when I met with the surgeon, oncologist and radiologist. I think it’s great you are informing yourself as much as possible. If they are starting with taxol and not doing adriamycin/cytoxan first, that sounds like you are on a less intense regimen which is good, you don’t need the more severe stuff.
Good luck with the treatment and I hope this helped! As for me, just got through my first week of radiation and feeling fine. You don’t feel anything and so far my skin is just fine and no fatigue.
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Hi all, hope it is ok that I post in here. I’m 45 and was diagnosed on Halloween with IDC. Still waiting for many test results, MRI on Monday is the next step for me.
I’m extremely worried about work and income, since I am an hourly employee with no paid leave, and also worried about my 3 daughters and all their extracurriculars and how I’m going to get them there/pay for them. My oldest is a senior in HS and I have to pay for college next year! I don’t want my cancer to change their lives. I’m terrified of telling them and bringing them sadness. Pretty much, I am just worried.
Love to all that are here with me
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