Newly Diagnosed

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Neese_Reads_a_Lot
Neese_Reads_a_Lot Member Posts: 1
edited June 2018 in IDC (Invasive Ductal Carcinoma)

Well here goes - be prepared for a book 😉

I'm a 56 year old woman who hadn't had any breast checks for 6 years and that was thermal imaging with the last one performed in 2012. Dealing with caring for my beautiful hubby who was diagnosed with a brain tumor in 2009 who passed at home in 2014 I guess I was in care for others mode (isn't that just women?). Anyway I only just took myself off for a random mammogram (no signs or symptoms) in February this year - not good news.

Fast forward to 17th April 2018 right sided mastectomy with a histopathology result as follows:

1. 75mm tumour (I have big boobs so not really palatable)

2. Grade 2 invasive ductal

3. Oestrogen and progesterone +ve

4. HER-2 Neg

5. 1 of 7 Sentinel nodes +ve

I'm on Letrazole/Femara which brings about 6% to my over all survival rate in 10 years. I have also had some of my tumor sent off for the Prosigna test to assist my decision making.

Btw my 26 year old son says mum it's your decision but given the stats I would go no chemo. My 25 year old daughter said mum we only have one parent left and there is a possible adjunctive therapy available. Again it's your choice but I would choose chemo.

My daughters comment resonated with me as I was beating myself up because I had put them (and myself) in a position that we needn't be in if I had had routine screening! Can't go back only forwards.

I know they would both support whatever decision I make but it's even harder given the journey they have already travelled helping me nurse their dad at home. Whilst they have both said they are not kids and will be fine I have a lot of living to do and don't want to compromise this at all.

My dilemma is to have chemo or not. Given I don't have my hubby to chat with about this I find it even tougher - well I try to chat with him but he doesn't reply 🙁My understanding based on the PREDICT on line risk or reoccurence model is that chemo brings another 6.9% to the table over 10 years - survival rate only morning to do with reoccurrence (not a convincing argument at the moment for me but I'm willing to be convinced).

Radiation to the site is different I've been told no radiation a 50% chance of local reoccurrence - radiation therapy this drops to 1% so no brainer.

I'm also looking at a number of complementary things around lifestyle changes especially infrared (near, mid and far) saunas (1-2 person) but the reviews are confusing and I'm not sure which to go with. So far recommendations are for Clearlight and Sunlight.

So my questions are (told you it would be a book 😉);

1. Anyone with same diagnosis that has chosen no chemo and where they are now?

2. Anyone that has input around infrared saunas that have all 3 spectrums.

I just want to thank everyone who takes the time to read my book and also to those who provide meaningful input xxx

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    My dx is not the same as yours but I can tell you (and many BCO members will testify!) that I researched my proposed tx to death. I pushed back everything beyond radiation (which, like you, was an easy decision for me). A random comment from my BS at a follow-up appointment convinced me that when it's time for an AI, I'll be good with it (he described it as having "the biggest bang for the buck", and said if he had a female relative who didn't want to go on it he'd crush it up and put it in her food--he believes in them that strongly). Re: chemo, I spent hours and hours reading articles, asked many many women here questions, asked a bunch more when I finally met with my MO (who, BTW, couldn't answer all of them and had to do her own research and get back to me), but in the end I decided to opt for the full treatment. I get that some of it doesn't seem to have a large impact on 10-year survival probability. But for me, I decided that it was kind of an insurance policy, and if I ever have something come back (and I've had three episodes), I'd be kicking myself pretty hard for not doing what I could to cure it this time around.

    Everyone here will tell you this is a very personal decision. You need to take enough time/do enough research/ask enough questions to arrive at one you can be at peace with.

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  • Tess1962
    Tess1962 Member Posts: 29
    edited May 2018

    Hi there,

    My diognisis is almost exactly the same as yours. My test came back less than 30% chance of a reoccurance so I am choosing NOT to do chemo. I will have 6 weeks of radiation.

    My surgery went beautifully and I am almost completely healed and feeling amazing. I would just relax and wait for your test results to come back and then make your decision.


    Good luck. <3

    T.


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  • moth
    moth Member Posts: 4,800
    edited May 2018

    You can see from my sig line that I'm going all out. I was prepared to beg my MO for chemo if they didn't offer it. I want every little scrap of help.

    Regarding the numbers, I look at it a different way. I've already been on the 'wrong' side of the stats once (I have no risk factors & did all the 'right' things that are listed as helpful to prevent bc). So for the purposes of this exercise, I assume I could well end up on the wrong side.

    I'm going to make these numbers up randomly btw - they're not real stats - just illustration. Let's say 80% of women with a certain dx are alive 10 years post dx. That means 20% are dead; that is 1 in 5. I don't know about you but 1 in 5 sounds really bad to me.

    Let's say Treatment A and Treatment B together move survival up to 90%. That means 10% have died. That is 1 in 10. That still sucks but it's better.

    I would way rather have the odds be 1 in 10 than 1 in 5.

    Locoregional recurrence would suck but it's treatable. Surgery, rads, chemo....it's treatable & start counting down again. Metastatic recurrence is what scares me and that's why I wanted chemo.

    Also, 5 or 10 year survival rates don't really interest me much. I want to live for 40 years more. I have tons of stuff to do!



    Regarding lifestyle choice to prevent recurrence, exercise has the biggest bang:


    "Physical activity can reduce breast cancer mortality by about 40% and has the most powerful effect of any lifestyle factor on breast cancer outcomes" http://www.cmaj.ca/content/189/7/E268#boxed-text-1

    There was another study done that showed runners did better than walkers - ie, heavy sweaty exercise gives better results.


    best wishes,






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  • Schweety
    Schweety Member Posts: 58
    edited June 2018

    How do you know if your IDC is early stage or not? 

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  • Falconer
    Falconer Member Posts: 1,192
    edited June 2018

    Schweety, it's early stage if it isn't found in distant body parts, bones, brain, liver, etc. then it's stage iv.

    Ingerp, I didn't notice a reference to oncotype or mammaprint. Did you have either of those tests? They can help with chemo decisions. Good luck!

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  • moth
    moth Member Posts: 4,800
    edited June 2018

    schweety, staging is based on the size of the tumor, whether lymph nodes are affected, and whether there are metastases.

    I think you said earlier that u/s was indicated approx 1 cm mass & no signs of lymph nodes? That would be Stage 1.

    Final staging isn't till after the surgery though - when they remove the mass they measure it & also they will probably so a sentinel lymph node removal to verify they're clear.

    you can read about all the stages here: https://www.mskcc.org/cancer-care/types/breast/dia...


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  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Neese,

    Every BC is different. Chemo is beneficial for aggressive cancers like triple negative, Her2 positive, and high risk recurrence score from Oncotype, etc. When my Oncotype came back 17, which is low risk, my surgeon said I don't need chemo. Looking at the full report, my recurrence in 10 years with 5 years of Tam is 11%, around 1.5% higher than if I did chemo, so it doesn't make a big difference. I will start hormonal therapy (AI) soon for 5 - 10 years. I believe medical science will lower the recurrence even further in the future with better meds. The report saids Chemo will be beneficial for my BC after 16 years, but I am gambling that more medical breakthrough will be made, and I'll be 70 by then. Meanwhile, I am changing my lifestyle - trying to lose weight, eat more plant based, exercising. etc.

    Schweety - You know from the biopsy, but more accurately, after the surgery. I was Stage 1 after biopsy, but Stage 2 after surgery. Stage 1 and 2 are early

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  • MiCyn
    MiCyn Member Posts: 73
    edited June 2018

    Neese...

    Do NOT beat yourself up over waiting so long to get mammogram. I went yearly for mammograms.Seven months after having a Good mammo, I found a lump. When dx mammo was done, radiologist suspected it to be fibroadenoma, but because it was palpable, US was done. That is when it became suspicious for BC.You can do all the right things, and still get BC. My Dr's have said I'm in the grey area. I just wish the decisions we have to make were easier..Sounds like you are doing your research, and not making hasty decision ..Hugs, Cyn

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  • bella2013
    bella2013 Member Posts: 489
    edited June 2018

    Neese, I had a similar diagnosis but my tumor was much larger and I had 0/1 nodes. I had BMX with DIEP Flap reconstruction. My Oncotype DX Score came back at 14 so it was decided that I would not have chemo or rads but would take AI.

    Don’t beat yourself up over the six years. I too went six years with no mammo. I too was the caregiver for my Mom & Dad who lived with me and passed 72 days apart in 2012. It isn’t unusual for caregivers to overlook our own health needs. I have always been healthy so when my gyno found my lump I was completely blind sighted. My first thought as soon as he said it’s Stage 1 Cancer ... if only I had my annual mammo’s this wouldn’t have happened. He said not so...for whatever reason I was destined to get breast cancer regardless of screenings. Now, if it had turned out to be Stage IV metastatic Cancer then let the self imposed beatings begin!

    Your path to being cancer free is very personal. Only you can make the decision. At 56, you are young and have many wonderful years ahead of you.

    Praying for peace and discernment as you choose your path

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