Need support regardless of age

newlydx15

We are a community of one, regardless of age, I just found out I have breast cancer at 35, anyhow I'd love to here everyones story, I'm here to listen please tell

Slappy-Squirrel

I was diagnosed last year at 54 with IDC. I have a heavy family history of BC, plus I am positive for the Chek 2 gene which doubles my risk of BC. I also had very dense breasts, which made my 14 years of mammograms useless. This is a wonderful group of women who are very supportive and will help you get through this.

Want2Bcamping

I was just diagnosed in May of this year - age 48. No history of cancer in my family at all. I also have dense breasts and found the lump myself.

tshire

I am 31. I was diagnosed in June. My surgery (lumpectomy) is this coming Monday, July 13th. Only 1 paternal grandmother with breast cancer, she got it in her 70s.

I found the lump myself- my doctor doing a physical exam and mammogram both missed the lump because it is very close to my nipple. It's small and somewhat deep and everyone keeps saying they can't believe I felt it. I am 98% ER+, 83% PR+, Nottingham score 5, mitosis rate 1, Ki67 34% (from biopsy).

I'll know more soon.

Lj061197

Hi

I'm 47 (48) on the 21st, I was diagnosed on June 15th with dcis stage 0. I am 90% ER positive and 60% PR positive. My surgery is July 14th, then 5 weeks radiation then 5 years Tamoxifen. I have no family history of BC.

My husband found the lump, no dense breast was on birth control for 15 years??

AMB138

I am a newbie and feeling alone in all of this so any feedback you may have I would be grateful for.

I have been reading a lot of info. here and other articles to learn as much as possible the last month. Had to have a stereotactic biopsy because of new clustered microcalcifications (several foci) within a nodule and scattered in other breast. I am waiting to see a BS because of a path report from CNB (from 6/2). The path report (sent to Dr. Stuart Schnitt @ Beth Isreal Deaconess for expert consultation) is uncertain as he could not distinguish cytological atypia as ADH or DCIS and it is in the context of Usual ductal hyperplasia and Apocrine Cyst. There is also PASH diagnosed. I am 50 and have a history of fibrocystic cysts since about 30 and I have small A cup breasts. I have a strong family history of Ovarian (my maternal aunt was BRCA tested about 10 yrs ago as negative). Also have extremely dense breast tissue (4).

I tend to be proactive about things and also have a lot on my plate (other family stressors/illness) and we do not have extended family support. Because of monumental stressors this past 5 years especially, I feel that my psyche cant handle on going stress of more biopsies and tests and I don't want to take Tamoxifin. I am worried BS will just say get a lumpectomy and we will watch it. Because of multiple foci (other ones that were not biopsied are probably atypical also if not DCIS?) and very small breasts, I am thinking the 2.9cm by 1 cm area (plus 1 more cm margin at least) there wont be much left! Does this sound like enough of a list that a BS and or insurance would agree to BMX? The waiting is driving me crazy!

I am waiting to see a breast surgeon that my GYN suggested next week and also planning to have my ovaries removed this month. When I called the BS office to ask about which plastic surgeon they work with, I was told that since I am not diagnosed with cancer a BMX would not be recommended xment and that they are booked up anyhow until October. I did find another BS name and I have a plastic surgeon in mind.

It was good to get all of that out....thanks....

Englishmummy

Hello, I am 41 - dx 5.22.15, 1 month prior to my 41st birthday, I have 3 children. Absolutely no family history of BC and no known risk factors. I found my lump in my right breast but diagnostic mammo found the one in the left. I am ER+ 99% PR 80% ki-8% on the right and ER+99% PR+10% ki-67 6% on the left, HER2- both sides, onco dx is 11. I underwent a NSBMX with immediate reconstruction on 06.10.15. and will be on Tamoxifen for at least 5 years. I feel good about my choices, I know they were right for me. I also feel so lucky for having an amazing insurance plan.

Ladies, be sure to surround yourself with positive people. I have cut a few people loose these past weeks but really, I should have cut them off years ago. I am healing well after surgery and I wish you all the same; a strong recovery both physcially and perhaps even more importantly, mentally. There are tons of resources, something to fit all personalities.....take what YOU need. Focus on yourselves, don't let others sway what you know to be the right path forward.  Love, light and energy to you all.

AMB: Goodness, it really seems like you have a lot on your plate - try to stay strong! I am not sure how insurance covers prophylatic measures - perhaps put in a call to see what they say, if BMX is a route you are considering? I would think a BS would be easy enough to convince as you could put forward your feelings and if psychologically you feel unable to repeat the pattern I would think the BS would agree (at least I know mine would have - she is VERY conscious of psychological factors). Best wishes.

AMB138

Englishmum...thanks for your kind words and overall encouragement. Gosh you are still recovering from your surgery. Glad you are at peace with your decision. I agree with your philosophy of cutting out any stressors (including high maintenance one sided relationships ...not sure it that's what you meant). Taking care of yourself is an art form at times that takes a lot of practice. I am considering BMX. The area that needs to be removed is retroareolar and Im thinking would be fairly disfiguring to do a lumpectomy. I really appreciate that you shared and I wish you well in your recovery .

Ginger48

AMB- I would talk to your BS about your concerns. Having atypical cells in both breasts as well as a measurable area that they feel needs to be removed, your dr may agree that mastectomy is reasonable. If they code it correctly; insurance might approve it. All you can do is advocate for yourself and what you feel you need. Best of luck!

I am BRCA2+, had my bilateral mastectomy and ovaries removed at age 48 in 2011. 4 years out and doing well.

AMB138

ginger48... thanks for your response. Its helpful to hear your viewpoint. I will see BS on Wed. so should have a better idea about it all then. Thanks

carla76

hi I'm 39 I tested positive for Brac2 Gene late last year, 5 weeks ago I had a bilatral breast macecotmy with extended LD reconstruction with nipple spearing still have quite abit of pain. I have to have a drain reinserted in my right side of back on Monday due to seroma. I feel i have made the best decision as I have a large history of BC in my family. Next month im also having a hysterectomy.

AMB138

Thought I would give an update. Had prophylactic Oophorectomy tues and that went very well. Also, had an excellent experience w breast surgeon surgeon appt. Yesterday. We are on same page with where im at. The game plan is genetic testing first (will take a few weeks)if negative proceed with exhisional biopsy and if positive we will be talking about double mastectomy. He seemed very knowledgeable and named a couple of studies I read about the subjectivity of determining precancerous cells and cancer.... (my pathology for biopsy on 6/2 was indeterminant) he definitely wants to look at more tissue. Anyhow, he does not think its urgent and it will take more time going through steps. I have appt mon. w genetic counselor. I feel so much better that he saw same stuff I did! ( I saw a different breast surgeon that was much more casual about it and just wanted to follow it w mammo in 6 mo.) Something else to compartmentalize but I am fortunate it doesnt seem life threatening.

Gemma1234

My bio mom had DCIS, 26 years cancer free, Her sister my beloved aunt/mom is stage 4 metastatic. My cousin/sister (my aunts daughter) is stage 4 metastatic. Inflammatory, HER2+, METS, lungs and esphogaus. My mother gave me up to her sister when I was 13. I have 6 clips in my breasts. 3 in each. Flat ephieal atyptia, sclerosing endomosis, radial scar, dense breasts, etc, etc, etc. Already one lumpectomy for atypia. Headed for MRI on Wednesday. Its all good. Except for tonight. I need to be with my cousin/sister next Monday for end stage chemo. She failed TDM-1. And she needs me. And i am the rock.She is 51 years young with three kids, Young adults that need me.And I keep saying, "i got this" Except for tonight.My rock is squishy. Sorry for the post, Didn't know what to do...I am just so tired..But good! Don't throw eggs at me! Just needed some support! MODS I wasn't sure where to post this, in this board or stage 4. You ladies take care.

Ginger48

gemma1234- that is so much cancer for you to handle. No apologies needed. That is what BCO is for. I have no answers for you other than to say be sure to take care of yourself along the way. So sorry for all you are going through! Sending a giant hug to you.

jazzyk

im 60 yrs old, was told last week i have breast cancer. had a routine mammogram that showed a 'mass'. went back for diagnostic mammogram then sonogram then biopsy. was told it is ductal carcinoma and focal invasive components. still sorting it all out. have appt next week with oncologist and then a breast surgeon. i dont know any more details at this point, or what stage i am at or what.

im not feeling too shiny about a lumpectomy, chemo and radiation.

no one in my family has ever had breast cancer that i know of.

Moderators

Jazzyk-

We want to welcome you to our community here at BCO. We're so sorry for the circumstances that bring you here, but we're glad you've found us, and hope you find the support you need.

The Mods

Ginger48

jazzyk-so sorry you are having to deal with this but you are in the right place and will find lots of information and support on this website.

CinderellaNC

I understand how you feel. I was given my diagnosis on May 29th .mit was totally out of the blue, had my routine yearly mammogram, called back for diagnostic pictures. Told I could choose to just come,back in 6 months for a follow up as it just could be microcalcifications or I could have a needle biopsy. I chose the needle biopsy option . I am glad I did as it showed I had invasive lobular carcinoma.mmy radiologist was as he said flabbergasted. Anyway, I had no family history of breast cancer either. My Diagnosis was triple negative (not great) but caught very early, Stage 1a no lymph nodes involved, Grade 2 lobular carcinoma. I had a lumpectomy and have starte a twelve week course of chemo TC every three weeks . This will be followed by either radiation or a mastectomy. I lean towards mastectomy to avoid the possible side effects of radiation down the road. Anyway I am 63, Caucasian anddon't have the BRCA 1 or BRCA2 mutation. Trip,e negative is Moore common in younger women, black and Hispanic women and those with the BRCA 1 and 1 mutations . Once you know your full story and diagnosis and have a course of treatment to follow you will feel less anxious, fearful and more proactive about this whole thing, believe me . Then you will be able to take action and not just wait and wonder what is going on . That is the hardest part. Knowledge is power. Keep the faith

Moderators

CinderellaNC, welcome to BCO,and thank you very much for sharing your story, experiences, and providing support! We are pleased that you found us.

From the Mods

jazzyk

hi everyone and thank you for the welcome. i feel odd sometimes wanting to talk with someone but not really having anyone. when you tell someone you have cancer they get all uncomfortable---anyone experience that? they ask, how are you, are you doing ok--but then get in a hurry to change the subject or realize they got to leave.

well i learbed a bit more, i got double hormone positive, its 11 mil, just started spreading, stage 1, got to cut it out, 3 weeks of radiation in a town 2 hrs away--crikey. i dunno........
surgery in 3 weeks , taking some lymphs too to double check--my head is still spinning and im trying to get a good handle on all of this.

i am impressed on ya'lls details you know about your cancer---im not knowledgeable enough to know what to ask, what is it i need to know about this thing i got?

i appreciate here your stories, i dint know anyone who has had breast cancer to talk with, so reading your posts helps alot.

BarredOwl

Hi Jazzyk:

Tostart learning more, you could read the sectionsof Breast Cancer 101 here:

http://www.breastcancer.org/breast-cancer-101

The home page of bc.org has a search field, which is helpful if you want to read more about a specific topic.

If you have not already done so, you should request copies of all written reports, such as those for the mammograms (screening and diagnostic), any other imaging (e.g., ultrasound or MRI), and the written pathology report from the biopsy. Ask the surgeon to explain it to you, and to explain the clinical implications of the findings so you understand.

BarredOwl

alina123

Hi,I was diagnosed with breast cancer last year at age of 36. I have a heavy family history of BC(my mom and 3 of her sisters ) plus I am positive for the 2 gene which doubles my risk of BC. On March i had surgery double mastectomy with imminently reconstruction ,the dr. also removed 3 of my nodes.Now 6 months later i have constantly pain in my right arm especially when i'm coughing .The pain is beyond endurance and i don't want to be on any medicine if i don't have to .Did any of you have similar issue like my .Please help

Ginger48

hi Alina-I am sorry you are in pain but Isuggest you have your arm evaluated by a lymphedema therapist. Pain in the arm is one symptom and catching it early makes treatment easier. Just a thought.

Marg64

If you don't have a hx of being addicted to heroin etc, I would insist on your pain meds.

Reason I am saying this is that weak sisters have abused their pain meds, been on Intervention etc. and created a problem with theishifr weak sister addictions for the rest of us. Things we used to medicate animals with are all the sudden abusable. They suffer. We (I) suffer as well as docs shift toward the tricyclic/gabapentin/effexor mode. I've informed all that my bx is OFF if this s--- or any kinda quack chiro is on. Sorry to be blunt.

Marg64

Ugh. Looks like Mommy-in-Law Hen is goinna wanna hover. For her baby 50 year old that is.

Frankly I realize thsi is a codependent situation and would sort it out. But Mommy has insinuated herself into getting texts from BF. I never consented to him saying anyhing. I'm aware he needs a support system which is her.

How do I make this so that Mommy (his Mommy) is not in icu and generally not around

MelissaDallas

You will not be in ICU. Some women even go home the day of their mastectomy. You likely will not be in the hospital lomg at all

BarredOwl

Hi Alina123:

I am sorry you are in such pain. That can be very draining.

Did you have tissue expanders placed, or were implants placed immediately? Expanders can be uncomfortable from what I have read.

I am not sure what would cause pain in your arm that is made worse by coughing. However, bilateral mastectomy with sentinel node biopsy ("SNB") --even without reconstruction-- can lead to arm and shoulder issues. I would recommend that you contact the office of your breast surgeon to report your pain symptoms, and request an evaluation and/or appropriate referrals (e.g., certified lymphedema therapist/physical therapist, plastic surgeon).

Here is some general information about causes of possible arm or shoulder pain:

(a) Lymphedema:

As you may know, lymphedema can occur following surgery and/or node removal due to disruption of lymph channels. Excess fluid (lymph) can collect in tissues causing edema (swelling). This can also cause pain and heaviness in the arm or other affected site.

Lymphedema can occur in some cases following SNB. The risk of lymphedema is a life-long risk (it may appear any time, even years later), and once it appears, it is a life-long condition. It should be treated as soon as possible to bring it under control, because it can be progressive.

For some basic introduction to the risk of developing lymphedema and the condition itself, please see this site. There is also information on self-care and risk reduction steps that you can take to try to avoid or control it.

http://www.stepup-speakout.org

As Ginger48 said, it is a good idea to obtain a referral to a certified lymphedema therapist ("CLT") for an evaluation, including baseline arm measurements. Here is some information about how to find one, or your breast surgeon may be able to refer you to one:

http://www.stepup-speakout.org/Finding_a_Qualified...

(b) Cording or Axillary Web Syndrome

"Cording" can also cause arm pain. In my case, it severely limited range of motion. I also experienced pain when moving or extending my arm, but not at rest. The pain was along the inside of my underarm, elbow and wrist. Often, you can clearly see a "cord". Here is some information about it:

http://www.stepup-speakout.org/Cording_and_Axillar...

(c) Frozen shoulder or other shoulder problems

Frozen shoulder can occur after breast surgery, causing pain and restricting range of motion. Some shoulder problems can lead to pain in the medial upper arm (outer side). I had this occur on one side. Physical therapy was very beneficial.

(d) Post-mastectomy Pain Syndrome ("PMPS") or nerve-related issues

Nerves are impacted by surgery, which can lead to pain problems. For example, with PMPS, pain is typically localized to the anterior/lateral chest wall, axilla, and/or medial upper arm according to this information:

http://www.uptodate.com/contents/clinical-manifest...

There might be some other causes of your arm pain, so it is best to check in with your breast surgeon, find out what is going on and obtain treatment.

Because of range of motion problems (both sides), possible frozen shoulder (left side), and axillary cording (both sides), I obtained a referral to a physical therapist (PT) with experience treating breast cancer patients and found an excellent PT, CLT-LANA. She was also a certified lymphedema therapist (CLT).

Take care,

BarredOwl

Marg64

In 2011, I had a bunch of dcis looking things and a stereotactic. I hid under my desk in the early morning, before anyone came.

In 2012, I had an MRI biopsy.

In 2013, I had a US.

In 2014, I skipped. I don't know why.

In 2015, they found a mass. It is probably benign. But every first degree female relative I have has breast cancer. My lifetime risk is over 85 percent. The rest of my family has survived bc. It was not easy. My own odds will only go up. They are 1:5 for five years, 2:5 for 10. 5:2 for 20, 3:2 for 30. Even at lifetime.

In 1998, I lost a friend to breast cancer. Her name was Susan Yoachum and she was the head political reporter of the San Francisco Chronicle. At that time, we were all on a pre-Windows 95 system that let coworkers see your drafts. We saw her draft that she had metastatic breast cancer. How it had spread. I believe she published that. We all saw her save the drafts of her own obituary.

It's due to her that I started screening in 2000. And why I'm getting a prophylactic mx in 2015.

614

I have had 6 excisional biopsies/lumpectomies, 6 core needle biopsies, and 1 cyst aspiration since I was in my 20's. 

I was diagnosed last year, when I was 49 and totally premenopausal, with ILC and LCIS. 

I was diagnosed because one of the lumps that was previously biopsied a few years ago changed.  My RO noticed that the lump got slightly larger and he ordered another core needle biopsy of the lump which came back malignant.  I went for that mammo/sono because my gynecologist was not happy with a very large palpable lump that I had.  I wasn't concerned about it because that lump had also already been biopsied a few years ago.  (What did I know!)  My gynecologist saved my life because he insisted that I have the mammo/sono even though that lump was already biopsied. 

The lump was large and palbable but nothing showed up on the mammo/sono.  Since the other lump was malignant, an MRI was ordered.  The recommendation from the MRI was that the palpable lump should be biopsied.  The results of the 2nd biopsy to that lump came back benign as well. 

I had a double lumpectomy when I had my BC surgery because both lumps were in the same breast and my BS at M.D. Anderson Cancer Center said that I did not need a double mastectomy. Doctors whom I consulted in Florida, where I live, told me that I should have a double mastectomy. 

The pathology report from the double lumpectomy showed that both the ILC and the LCIS were pleomorphic.  In addition, the large lump that was biopsied twice, came back as being malignant as well.  I had invasive tubular carcinoma and pleomorphic LCIS as well as numerous benign findings in that lump.

I had radiation, an oophorectomy to induce menopause so that I could take AI's, and now I am taking Arimidex/Anastrazole.

I am totally lucky that my cancer was detected and that I was early stage.

At my 6 month follow up, 2 suspicious areas were detected in the breast with the bc.  One was biopsied and was benign.  However, I now have a giant hematoma that may never go away.  The other suspicious area is a 1.8cm linear non-mass enhancement with rapid washin washout kinetics (from the MRI) that could not be biopsied.  I am on a 6 month wait and watch protocol.  I will know more in November 2015 when I have my next round of mammo/sono, and MRI tests. 

As I said, I feel very lucky to be alive and I am glad that I am having close surveillance.

Good luck to all of you.