Newly diagnosed

I am a 75 yr old widow, just diagnosed w/breast cancer! I am trying to wrap my head around it but my emotions are all over the place!! One day I know what I am going to do, the next, I don't. My daughter had breast cancer 8 yes at & chose the most aggressive approach km as texting, chemo & radiation, as she wanted to make sure it was all gone! She is a nurse & has been giving me info, but she lives in NY & I am in SC! I feel alone, confused, mad as heck, scared, afraid & my insides are swirling around Can't sleep, not much of an appetite, etc! I am still recovering from an accident that broke both knees & both femurs, leaving me w/little use of my legs at the moment! So this is like a double-whammy, of sorts! My Dr said if I had a mastectomy I wouldn't have to have radiation. If I have a lumpectomy I would need 6 weeks of radiation. No biopsy has been done. They are going by the mammogram & ultrasound results. They feel a biopsy would just put me through another diagnostic test & feel fairly certain we would be at the same choices as right now! What to do, what to do!!! Can anyone shed some light on any of this??? Please. My thoughts & prayers are with all of you with this horrendous diagnosis!!

Gerji

24 Replies

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  • Hi Gerji

    So very sorry for all of your troubles. You have so much on your plate. Receiving the diagnosis of breast cancer begins an overwhelming journey and emotional roller coaster ride that no one wants to take. I am a 65 year old retired nurse and live in NYC. 6 months ago I had a routine mammo that picked up a 7mm area of of microcalcifications. There was no lump that could be felt. I was told that 80% of the time, that this turns out not to be breast cancer. I had a stereotactic biopsy and was diagnosed with stage 0, grade 3 (high grade), estrogen + DCIS. The biopsy was an uncomfortable procedure with an easy recovery. My surgeon ordered an MRI to determine if there were other areas of concern or involvement.

    I didn't sleep or eat either, became very anxious and depressed as I tried to procesz everything I needed to make a treatment decision. My best support came from friends who have had breast cancer because they knew exactly what I was going through.

    I understand that your injuries from the accident and living alone complicate everything for you. However, treatment for breast cancer should be evidence based and determined by an approach that considers the type, grade and stage of your cancer.

    So I ask you how was cancer diagnosed without a biopsy to confirm a suspicion? Do u have a mass that can b felt? How large is the area of concern? Is your daughter's breast cancer considered a genetic mutation like BRCA 1 or 2? This is all important information you need to make treatment decisions. Have you considered a second opinion? I would b suspect of a surgeon proposing to perform a mastectomy without first confirming the diagnosis with a biopsy.

    Not all breast cancers are the same. Some do require an agressive approach while others don't.

    I had lumpectomy 6 weeks after my biopsy. Based on that final pathology report I made a gut wrenching decision to have radiation which I just completed 2 weeks ago. Had I had a lower grade DCIS I would not have had radiation and taken an watchful waiting approach.

    These decisions are not easy to make. You will find support from SHARE (call line), support groups and survivors you may personally know. Make your decision based on facts and what is right for you. Everyone's situation is unique and what was my right decision may not be your right decision.

    Good luck. Please keep me posted. I am here to support you in any way I can no matter what decision you make.

    R in NYC

  • Thanks for your msg & insight! I have a very hard lump in my left breast behind the nipple. I compare it to a domino. Not real sure of exact size. I think the Dr wanted to spare me the biopsy & radiation. You said you had the radiation. What was it like, during & after? I have considered the lumpectomy & radiation as an alternative to the mastectomy but still not sure which way I want to go! It is, indeed, an emotional roller coaster of emotions (I hate roller coasters!!). Like I said, one day I feel one way, next day I feel another. My daughter who went through all this is a help, but, of course, leaving the decision-making up to me! Its hard. I don't want to lose my breast, but I do want the cancer gone!! That's why my daughter had all three's mastectomy, chemo & radiation. I have even considered doing nothing because of my age, but think the worry & stress & knowledge of knowing it was still there would kill me before the cancer! So, here I am, doing research, learning from others and trying my darnedest to make the "right" decision!! And wondering, all the while, if it will be the right decision!! I am hoping & praying that, with the help of others like you, that I can eventually make that decision, right or wrong, as it might be! The fear, anger, disbelief, and confusion seem to be ruling over me right now, though, making that decision even harder to make!

  • I finished 20 days of radiation two weeks ago today. The first 16 days were whole breast. The last 4 were a "boost" to the area where my lesion was. I felt nothing during the treatments and had no problems except for radiation fatigue which began at about day 10. The effects of radiation are cumulative and peak 1-2 weeks after the treatments are completed. 5 days after treatment, I began to have skin changes only in the boost area, blotchy redness like a rash, and some itching. The key to preventing major skin problems is to moisturize. I used a steroid product called Elocon every 12 hours and alternated it with aquaphor every 12 hours. So about every 6 hours I was and still am applying a product. This will continue for another 2 weeks.

    Studies show that the survival rates for the type of breast cancer I have are almost the same if I had a mastectomy or lumpectomy with radiation.

    The recurrence rates differ between the two procedures. They calculated my recurrence risk at 16% if I only had a lumpectomy. 7% if I had a lumpectomy and radiation. And 3% with a lumpectomy, radiation and an estrogen blocking medication. A mastectomy would have decreased my risk of recurrence to 1%

    My surgeon strongly felt that I did not need a lumpectomy based on survival and recurrence rates being almost the same.

    I was an absolute mess when trying to make treatment decisions. I felt like I stepped into a sink hole and had no way out. It was overwhelming to process having breast cancer let alone having to make treatment decisions. I too struggled with making the "right " decision. And after I thought I knew what I wanted to do, I kept second guessing myself.

    I too did not want to lose my breast or go through reconstruction surgery. The lumpectomy surgery went well and I had a very easy recovery. My lymph nodes were not removed. After the lumpectomy I was very reluctant to have radiation and didn't consent to it until almost 2 months after surgery. I still have yet to decide if I will take an aromatase inhibitor to block estrogen.

    I'm not sure that there is a "right" decision. You can only make what you feel is the best decision for you now based on the information you have. Whatever decision you make, don't look back just move forward, heal and enjoy your life. Eventually the fear, anger and disbelief begin to fade. 6 months after diagnosis I am finally smiling, llaughing and finding joy in my life again.

    Please keep me posted and feel free to reach out for support.

    R

  • I also wanted to let you know that there are different radiation protocols. Although 6 weeks had been the standard new studies have found that shorter protocols where they increase the dosage at each treatment are just as effective and do not increase the short term skin or fatigue side effects. I actually went for 3 radiation therapy consults and none recomnendrd 6 weeks of treatment. One option was to add some of the boost to each treatment session, reducing the the entire timeframe to 3 weeks. 2 of consults offered 3 weeks of whole breast therapy and adding the boost at the end for total of 4 weeks of treatments.

    So this is something that can be discussed with a radiation oncologist as possible options.

    Do not feel that you are crazy. All the emotions you are feeling are very normal. You are living a nightmare and going through a grieving process while having to make tough decisions. Ask questions and weigh the pros and cons. Ultimately you will be able to make the decision that you can best live with.

    R in NYC

  • Hi Geri yes there is so much unknown. I am a nurse practitioner and I feel the same way, confused, unsure and scared. I decided on a double mastectomy. I don't want to do radiation, I am very healthy and want to rid my self off some of the fear. I will pray for you and answer any questions you have. I guess this is when we need to let go of the fear and cast it onto the lord.

  • Thanks for your msg & kind words. Have you had the surgery?

  • Hi Danacoop,

    Ignore my question re whether you'd had the surgery!.my mind must be going now also, as I knew you had radiation rather than surgery. I was going to ask you about the radiation, so thanks for filling me in.

  • Danacoop,

    You're going to think I am a nutcase! I was thinking of 2 things at once & realize that you did decide on surgery rather than radiation! Sorry. I really am not usually like this. So, you are waiting for the surgery, having made up your mind & me, I am just waiting, having made no decision yet! Wow! This whole thing seems like a nightmare that one wakes HP from doesn't it? Was it difficult for you to make up you'd mind? I'm having a really hard time making it. Each day, I find myself changing my mind back & forth, back & forth! I want it gone but I'm just not sure how yet! I really do admire you & the fact you've already decided! Wish I could!! Do they do both of your breasts during the one surgery? How much of a recovery time are they telling you & how long will you be in the hospital? Do you have family with you? That will help! My thoughts & prayers are with you. I knowhow tough waiting is. I, most definitely, am not a patient person! Lean on our Lord. He is with you. Thanks for your msgs, and always remember I am here if you want to vent or just plain chat!

    Gerji

  • I am so sorry for your diagnosis. I was diagnosed 8 days ago with invasive lobular carcinoma. What you are feeling is so normal. I told my friend that you have to go through The stages of grief really quickly and come to acceptance. I had to do that in 8 days. Made the decision to have mastectomy today. Having it on Tuesday.. you also have the extra issue of your knees and femurs. Please promise me that you will TRY (I know it is hard) to cut yourself some slack. You have a lot going on and it is so normal to have a lot of emotions and feelings swirling around. Please do not feel like you are alone in this. We are all here for you

  • Doubkecola59 I am so sorry. Please keep us posted! My thoughts & prayers are with you! At least you won't have long to wait, as some do! Have they told you how long you'll be in surgery or the hospital? The Lord is with you!

  • Good morning! I would recommend a biopsy or second opinion just so that you can have a piece of mind. This way they would know without a doubt what procedures to take. God bless you!

  • Hi Gerji

    I agree that maybe biopsy and a second opinion are a good plan of action. I was diagnosed with Stage 2 triple negative breast cancer just before Christmas. I currently on my 6th round of chemo of 16 which will be followed by surgery then radiation. I have been brave and strong in front of family until yesterday when I finally had a meltdown of all the emotions I've kept bottled up. It's normal and ok to be emotional at this time. Take care of you and what you need to do to fight this. Hang in there and anything time you need to vent or have questions don't hesitate to ask. Good luck!

  • All of the things you're feeling are perfectly natural. I felt so helpless and angry at everyone who didn't have breast cancer. I felt out of control and vulnerable. A little research (but not too much), choosing a good medical team and support from my friends and family really helped me through. And going to SHARE meetings as well. I know you can't do this being in SC but the helpline is always available.

    I'm wondering how they can tell the mass is cancerous if they haven't done a biopsy. It makes sense that they don't want to put you through too many invasive diagnostic tests with what you've been through with your other surgeries, and your age. Do you think a second opinion is in order?

    Just know that you have support and breast cancer "sisters" here! Good luck to you.

  • Thanks so much, ladies, for all the kind words & support, especially when all of you are going through all this yourselves!! Yet you have time for me!! Thank you soooo much!! Comparing it to grief is very accurate!! I remember all the grief stages from when I lost my husband, best friend &soul mate of 46 years!! Sorrow, disbelief, numbness, waiting to wake from the horrendous nightmare, anger and finally, acceptance! But you never get over it. People talk about closure, but I don't think there is ever any closure & you never get over it!! It is there, lurking, waiting to resurface at any given moment!! It never goes away & life is never the same again, just different in most ways, if not all!! So I see this is taking on those same characteristics!! I cannot even begin to tell you how much it means to me that you are here!!

  • Gerji: you will get through this especially if you continue to reach out when you need support. No one should have to navigate this alone... I must add my voice to the chorus here that advocates a biopsy. It is impossible to make a certain diagnosis without it....and the biopsy itself ( the pathology) will tell you and your doctors more about the particular breast cancer you have. It is NOT one disease and the more you know, the better your treatment decisions. And, as has been noted here, lumpectomy plus radiation is just as effective as mastectomy . If you want to keep your breast, please tell this to your doctors and see if it's possible For many women it's preferable and just as safe. Use this site and call Share's Breast cancer Helpline if you want to discuss these issues with a trained survivor. Support and knowledge are key and will allow you make the best possible decisions. Good luck!

  • Thanks so much!!

  • Gerji,

    I'm sorry to hear about your diagnosis. When I was first diagnosed with early stage breast cancer (that's stage I, II or III), there was no question about my mammogram showing cancer. There was nothing "suspicious," because the radiologist could tell immediately that it was cancer.

    HOWEVER, (and as you can tell, that's a big however), a biopsy is ALWAYS necessary to confirm the findings on a mammogram, AND, further, also to tell which subtype of breast cancer you have. WHY? (and as you can tell that's a big why). Because the different subtypes are treated differently. EXTREMELY IMPORTANT. Otherwise it's like shooting in the dark, and cancer treatment has come a long way past that.

    A second opinion is always welcome.

    As to being 75. Well, you're 75 young.

    Many hugs to you on your recovery from the accident and also in having to cope with the diagnosis.

    Joan

  • Thanks Joan. I believe the Dr didn't want to subject me to yet another painful procedure, knowing what I've gone through (& still going through) because of my accident & knowing I have to make special transportation arrangements every time I go out anywhere. The radiologist & surgeon are going by what was seen on the ultrasound & mammogram and it did not show any indication of it being otherwise than localized in the nipple area.

  • You need to have a biopsy so the pathology confirms the lump and what is showing on the imaging is malignant. There's a chance it might be benign. I would go for a second opinion before making any decisions. A biopsy is mandatory, i've never heard of such a thing. Get copies of all your results and seek another opinion. Good luck and God Bless!

  • Hi,

    Just came on board and read your post. I'm on the SHARE HelpLine. Had fam. history of BC, and because of that, 30 years of mammos; BRCA Neg. On the 30th yr., age 66, (11 yrs. ago) an invasive lobular ca - 4mm, was found - 3 weeks after losing my husband... My first impulse was to do a mastectomy. A double mastectomy was suggested and I agreed. After surgery, double-checked with two oncologists: radiation, I was told, was not indicated.

    Seven years later my surgeon noticed a dimple on the side of my chest wall ! Sonogram & modified mammo of the fleshy tissue, indicated "something present". Biopsy revealed another 4mm lesion. This time, after the lesion was removed, I underwent radiation therapy. This was almost 5 years ago.

    My take on this ? If I didn't have the knowledge and experience helping my mom and aunts, and hadn't suffered the loss of a husband, I would probably have accepted the suggestions of my radiologist and my surgeon, and had a lumpectomy and radiation, and avoided the second surgery.

    About radiation: was very upset about the 5 1/2 weeks/5 per week radiation schedule. Decided that if it had to be faced, it would be done in the best conditions. I ate properly, worked vigorously, was exhausted at the end of the first week - not because of the radiation, but because i had to commute from home to the hospital and afterwards to work, daily. But at the second week it became a "breeze". It's like going to the gym and working out for the first week. Never was tired and was proud to be able to be strong.

    Tip: at NYU Medical Center, radiation patients are given a lotion called CALENDULA. They had made a study of many creams and lotions used to protect the skin and this turned out to be the best. How I used it? One can't use it before radiation, so I showered early AM, removing all traces of it. Early AM radiation , followed by spreading a thick lawyer on the radiated skin. Threw on a sleeveless t-shirt, and over that the bra and clothing and went to work. At night, another thick layer and a t-shirt to protect bedding etc. Result: no blistering, and a sun burn slowly increasing till the end of the treatment. After radiation, four more weeks of the product and my skin was smooth and healed.

    Note 1: on the second surgery a new sentinel node had to searched out, and it finally was, after four hours of searching. Both times - negative nodes.

    Note 2: there is a 5-7% incidence of recurrence after a double mastectomy. I was thinking only of the 95% cancer free life... Some of us fall into the 5% possibility of recurrence.

    Best of luck to you, and remember, we are strong women! This is an annoying "blip" in our lives. Do what you have to and look forward with a smile!

  • Today is an extremely low day forms!! Crying, anger, feeling all alone, very depressed & wondering if I just want to let this Darned thing in my body win!! Don't feel I have the strength or desire to make any decision!! And yo make it worse, my ins co giving me problem!s w/transports, as I am in the wheelchair still recovering from the accident that left me w/very limited use of my legs! I just don't know what to do any more! Lots of questions, no answers, etc! I can't even think anymore!!

    Sorry

  • Hi Geri

    I've been thinking about you and wondering how you are doing.

    R in NYC

  • Hi Gerji,

    You've been through so much, I can understand your frustration and discouragement. I'm wondering if it would be helpful to hash over your options with a volunteer on the Share breast cancer helpline. A Share volunteer may also be able to help you find practical resources for your logistical problems. If nothing else, she'll be able to provide some much needed moral support.

    Please don't give up!

  • Been there, done that & no help. Thanks anyways

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