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Topic: 70yr old mother refused to see MD for years, now breast cancer?

Forum: Older Than 60 Years Old With Breast Cancer —

Meet other women who are similar in age and dealing with age-appropriate issues.

Posted on: Mar 22, 2017 11:21AM

ShariP wrote:

My mother has had multiple bad experiences with the medical community so 25 years ago she stopped seeing all medical doctors and switched to alternative medicine. She takes a total of about 30 different 'supplements' a combination of vitamins, herbal and homeopathic 'remedies'. Two years ago she told me she found a lump in her left breast, but not to worry, she knew what to do. Of course I worried and begged her to get checked, but she refused. Fast forward to fall 2016 and now she had 2 lumps. She also had balance issues and started falling, blaming it on the tile flooring, she started having back pain (which she attributed to sciatica) and swelling in her legs and feet (edema) and memory loss. Again our family tried to convince her to see a doctor, so she started seeing a naturopathic doctor who claimed my mother was reacting to black mould in the house. Around Christmas 2016, my mom told me one of the breast lumps was leaking bloody fluid, not from the nipple but from the inner part of the breast, where there was an opening. Same scenario, again she refused to see anyone but her naturopathic doctor. She also started getting a chronic cough, and her naturopath tested her and said she had too much fluid in her body and put her on some other homeopathic treatment plan. Last week my mom found a 3rd lump, same breast, and the first 2 lumps were now seeping. A family friend, also a retired nurse in whom my mother confided, pulled some strings at the hospital where she had worked for 40 years, and made appointments for my mom to see a surgeon, as well as have a bone scan, blood test, and biopsy, which my mom felt obligated to honor since her friend went though all that trouble. Now we are waiting for the results, as well an upcoming CT scan appointment. Given all the other symptoms she has had, my uneducated guess is that she will be diagnosed with metastatic breast cancer with spots in lungs, bones and possibly brain and liver. I am scared to death because I know she will refuse any conventional treatment, such as chemo, radiation or hormonal therapy. All we can do, is be there for her and support her in whatever choices she makes, but I am so scared and upset that she waited so long, and now it is too late. To add insult to injury, my 58 year old stepfather has become her almost full time care giver as she can barely walk anymore or do anything around the house. He has also been unemployed for nearly a year while trying to start his own business. Now all those plans will have to take a backseat while my mother's care takes priority, but with no current income, he is super stressed both about her condition as well as the total lack of finances. I am losing sleep over this whole situation too and though I want to help, I don't know how.

Sorry to dump all of this here in this forum, but I needed to share in case someone has gone through, or is going through something similar. I think a good support system is going to be crucial, and so I welcome any advice or support from this community.

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Mar 22, 2017 04:21PM Moderators wrote:

ShariP,

We're so sorry for the scare you're going through, and just wanted to send our positive thoughts your way. We hope everything will turn out to be okay. If it does turn out to be not-so-great news, we're all here for you, and your mom and you'll find great support here!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 22, 2017 04:44PM muska wrote:

Shari, I am very very sorry you and your family are in this situation. Hopefully, you will get a better idea about the diagnosis and options soon. At the same time, I wonder whether the naturopath who guided her "care" for many years can be sued for negligence or malpractice? We have a few lawers on this board, I hope they will comment. That would at least relieve financial pressure on your step-father.

Best.
Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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Mar 22, 2017 06:29PM MTwoman wrote:

I'm with the Mods (so very sorry for what you, your Mother and your whole family are going through) AND with muska. That Naturopath who was a party to your Mom not getting responsible care should be held accountable. Naturopaths are supposed to be practitioners of medicine, who use interventions that are more holistic, not quacks who ignore their patients' serious illnesses. That person actually kept your Mom from getting appropriate care as they indicated they WERE caring for her.

That being said, law suits take an emotional toll on people. Before you would undertake this, think about how much energy you have to give it, and how much you want to spend on your mother and step-father as well (along with whatever/whomever in your life needs attention and energy).

So very sorry! ((hugs))

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Mar 22, 2017 07:18PM ElaineTherese wrote:

Hi!

I am very sorry about your situation. One asset you might have is your Mom's friend, the retired nurse. Obviously, she is someone your Mom trusts (confided in her) and respects (followed through on the appointments she set up). Perhaps, she can continue to serve as a "bridge" between your Mom and the medical community.

Another thought is this: many times doctors initially treat Stage IV patients who test ER+/PR+/HER2- with hormonal therapy like aromatase inhibitors (AIs). AIs are just pills; they aren't chemo and they often reduce mets very well. Since your Mom isn't adverse to swallowing several supplements a day, maybe she'd be OK about taking an AI.

((Hugs))

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Mar 22, 2017 10:36PM gracie22 wrote:

Agree with Elaine Therese. If your mom has been so anti-doc that she has been willing to deal with all of these scary medical issues without traditional care, she must have virtually no trust in MDs. Her nurse friend will be invaluable in helping her make whatever treatment decisions she is comfortable with after you hear back on the tests. Hard to know what the Naturopath's role was unless your mom cares to discuss it in detail; sounds as if she was seeing him/her less than a year, and it is possible that your mom would not have been compliant with entreaties to seek traditional care even if it was suggested. I have had zero experience with Naturopaths, but I would hope that he/she would recognize a break-through tumor (if that is indeed what is happening) and advise of the need for surgery/traditional medicine to address it. If it does wind up to be a serious cancer situation, social workers can be very helpful in dealing with logistics. My mom passed away recently less than a year after diagnosis with metastasized uterine cancer, and while my siblings and I found it very difficult navigating our crazy medical system and all of the specialty docs, there was some good advice available via social workers and hospice/palliative specialists. My mom had no doc phobias and saw physicians regularly, but we eventually found that she had ignored her occasional bleeding symptoms for a long time; an earlier surgery could have made a big difference. Good luck; I hope the news you get is better than what you are expecting.

Dx IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (FISH) Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right): Silicone implant
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Mar 30, 2017 11:49AM - edited Mar 31, 2017 09:42AM by ShariP

Thank you everyone for your advice and support. So we have a partial diagnosis, and sadly, it is definitely breast cancer. I have not seen the pathology report nor did my mom want to discuss the specifics last night when she confirmed this news, so I don't know yet what stage or type it is or even if lymph nodes are involved, more details still to come. However, the fact that the doctor offered Tamoxifen as one treatment option means it is (from my limited understanding) hormone receptor positive, correct? My mother refuses any type of, as she calls it, 'chemical' medication, so will not take Tamoxifen at all, nor any other medication. including aromatase inhibitors. At this point, her decision is to have a total mastectomy of the left breast where the tumors are. Although this is a very brave decision, she also states she will not follow up with radiation nor chemo nor any type of medication. So my fear is that even if she has the breast removed, it could easily come back elsewhere, if it has not already spread to other tissues, organs, etc. I have asked to see the pathology report so I can see all the data for myself and know exactly what we are facing. I have a feeling if she had dealt with this from the time she found the first lump almost 2 years ago, a simple lumpectomy would have been enough, and we would not be where we are today with a much more serious situation. However, we cannot change the past, only deal in the present to ensure her future.

Once my mom has had the operation (hopefully sooner rather than later), we (my family and I) will think about whether to pursue this naturopath who obviously isn't worth her degree if she had been seeing my mother every 3-4 months for the past 18 months and did not suspect cancer nor advise her to get tested. I feel like she inspired false confidence and was a key reason why my mother delayed being tested. But right now all our focus is on getting my mother through this next step, the surgery, and then we will see.


UPDATE MARCH 31st: I now have copies of my mom's bone scan, pathology and hematology reports, and it does not look good :( She has been diagnosed with invasive ductal mucinous carcinoma with a proliferation index of 15%-20%. It is also estrogen and progesterone positive at 95% each, but HER-2 negative. The tumor in her breast measures 7.5cm with a necrotic center. The bone scan results points to about 5 indications of mild to moderate abnormal increased bone tracer uptake throughout her spine, in the humerus and in her pelvis, and as such, the doctor wants her to do a another CT scan to rule out bone metastasis. Finally, her hematology results are showing signs of anisocytosis and macrocytosis (not sure if this is relevant to the cancer or just another health issue). Nowhere in the report does it mention lymph nodes, so I don't know what this cancer's stage is, but if it is in the bones, I guess it is Stage IV. I am still researching what all this means as this brand new territory for us, but if anyone can provide more insight, I sure would appreciate that.

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Apr 1, 2017 05:58PM gracie22 wrote:

It is good that the tumor is strongly ER/PR+ and HER2 negative. It's possible that your mom may eventually be open to an AI which can be really effective even in advanced hormone responsive cancer. Chemo might be recommended too if she is healthy enough and if the grade of the cancer is such that chemo will help. Usually, the higher the grade the more effective chemo is and cancer cells are graded 1, 2 or 3 with 3 being the fastest growing. I am not sure what the proliferation percentage you quoted means since it can be measured on a couple of different scales (see link below.) Mucinous is a type that is usually lower grade and slow growing, but tumors are often not purely one type...the oncologist can discuss that with you (mucinous link below.) It would be Stage IV if it is in the bones, but it does not sound like that is definite yet. Many on the boards have lived with bone mets for years, and some have even seen resolution of mets with treatment. I don't know what the blood work means (sounds like an irregularity with blood cells)--be sure she tells the docs all about any supplements etc she has been taking since that can affect things.

http://www.breastcancer.org/symptoms/types/mucinous/treatment

http://www.breastcancer.org/symptoms/diagnosis/rate_grade

Dx IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (FISH) Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right): Silicone implant
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Apr 3, 2017 12:22PM MTwoman wrote:

ShariP, As far as the bloodwork goes, I would follow up on that, separately if necessary. What those terms refer to is an uneven (aniso) and enlarged (macro) size of red blood cells and can come from a specific type of anemia or other blood conditions. Typically, the underlying condition is treated. This speaks to her overall health condition and will need to be addressed, in order to heal and recover from treatment.

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Apr 8, 2017 08:19PM - edited Apr 8, 2017 08:20PM by Icietla

ShariP, I am glad she has gone through with that much evaluation and is willing to have surgical treatment. She will need some medication to have her mastectomy.

I wonder if her Nurse friend might discuss the other recommended cancer control measures with her, with a focus on nature/naturalness -- like, tell her about all of the medicines being derived from substances found in nature, talk about radiation being part of the natural environment, etc.

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Apr 9, 2017 08:25PM Meow13 wrote:

Shari, so far it is not too bad. If she does have bone mets AI drugs or tamoxifen should help given the tumor was strongly er and pr positive. She is having surgery, mastectomy, that is really encouraging that she will try and treat this disease. I personally was absolutely horrified with the prospect of having a mastectomy. Emotionally it killed me but no physical pain. I chose to have DIEP reconstruction and the fix was so good it took away the emotional pain from the mastectomy. I still have emotional pain that the cancer could come back but it is fading away. She could try tamoxifen or AI and always stop if she wanted.

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Apr 11, 2017 04:14PM ShariP wrote:

Update April 11 2017:

Things are not going well. My mother now has no fewer than 4 open wounds on her breast that are bleeding, and she says the liquid is greenish, which to me denotes infection. She refuses to go back to the doctor, and is not even answering the phone when the doctor calls. She is backtracking on her decision to have the surgery, and is instead looking for a magic bullet at alternative cancer centers like something called Issels in Mexico that claims $50 000 for 2 weeks in the clinic will cure her!!! She still visits her naturopath and trusts her, and I am going to report this woman to her regulatory board for purposely and knowingly ignoring the warning signs of possible breast cancer (i.e. what started off as a lump 2 years ago, then grew, then manifested on the skin as bleeding wounds and pain) and did nothing but recommend 'nutritional supplements' and homeopathic remedies that have done nothing to help and have actually delayed my mom seeking medical help. This witch doctor must be stopped so she cannot cause any more harm.

My mom refuses any and all conventional treatment: surgery/hormone/radiation/chemo, and insists on applying DIY essential oil solutions to the breast and swallowing dozens of 'natural' pills each day. She is watching YouTube videos like 'Cancer-Forbidden Cures' and is convinced the medical community is like a mafia. She will not listen to reason, I know she is terrified, but I am terrified that if she doesn't do something soon, it will be too late :(


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Apr 11, 2017 04:53PM gracie22 wrote:

Shari, did the biopsy report mention anything about the tumor breaking through the skin? Your mother reports wounds/seeping but nothing is said about that in the bit of the report that you quoted. Tumor breaking through the skin should be mentioned somewhere in the report--just trying to get clear on what she is seeing. I don't think you can do much. It is her body and she has been consistent in her desire to avoid conventional treatment. Perhaps her friend can give it another shot? While tumor is huge, its biology is favorable--she could do well with anti-hormonals which are in pill form, and a very different thing from chemo which sounds as if it would be a complete no-go with her. If she does indeed have a fungating tumor, it will begin to smell foul and eventually healing will not be possible--only wound care. Doctors rarely see it in the US, it is typically more common in developing countries with limited medical care. Even if your mom rejects any other therapies, perhaps you and her friend can at least convince her to do the mastectomy. Eventually, even mastectomy will not be possible and she will be stuck with lifelong care of a stinking, dangerous wound.

http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/other-side-effects/fungating-wounds.html

Dx IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (FISH) Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right): Silicone implant
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Apr 11, 2017 05:15PM ShariP wrote:

Hi gracie22,

The tumor has not broken through the skin per se, and the biopsy report states it is mucinous carcinoma, so I don't know if that has something to do with it, but there are now 4 openings in the skin of the breast, she had one 6 months ago and they have multiplied (some so big you could stick the end of your thumb inside) and my mom says all are leaking a greenish bloody discharge. Apparently her friend has been pushing her to book the surgery, but to no avail. She is treating the wounds topically with a mixture of castor oil and tea tree oil, but I fear that may be doing more harm than good at this point.

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Apr 11, 2017 05:21PM MTwoman wrote:

ShariP, I am so very sorry to hear your update. My heart breaks for you and for your Mother. I'm sure she is terrified, and trying to exert some sense of control over a situation that feels so overwhelming and out of control. Many of us have been through that period of time, in the beginning, when the "c" diagnosis is given to us, and the feeling of panic set in. Some of us respond by seeking as much medical research and expertise as possible, and others respond in their own way. It is very hard to watch someone make decisions that feel so very wrong to us. ((hugs))

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Apr 11, 2017 11:26PM LisaAlissa wrote:

Shari,

My heart breaks for you. Is there a possibility that your Mom has developed cognitive difficulties? So that she may have become susceptible to the sort of fraud/medical malpractice you describe? If so, she may be in need of a (legal) guardian who would then make medical descisions for her. Does she have a power of attorney/medical power of attorney which would become effective if she is sufficiently cognitively impaired?

What are your Stepfather's views of your mother's medical treatment?

Clearly if you push this sort of evaluation, it might (would?) affect your relationship with your mother. But you may be able to get help if someone else reports the situation to the authorities in your locale who deal with abuse of vulnerable elders or with elders in need of protection.

If someone else if pushing for a medical evaluation (authorities?) you could be her support as she "suffers through" seeing docs she doesn't want to deal with and an evaluation of her cognitive capacity.

The laws vary from place to place about who can require such an evaluation. Some of the places/people you may want to talk with might be: the social worker at your cancer center, your doctor, local police, local senior center, an eldercare attorney, a geriatric medical practice associated with a university or a teaching hospital who can perform a comprehensive evaluation.

Further, depending on the results, if appropriate legal documents are not already in place,

If the results are that she remains competent to direct her medical care, then at least you will know that she remains able to make these decisions for herself, no matter how heartbreaking they may be.

My very best wishes for you and your mother as you travel her path with her.

LisaAlissa

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Apr 12, 2017 03:59AM Eian01 wrote:

Sorry to hear about your mom and what you're going through. Naturopath is equally responsible for escalating it this far. I hope your mom will eventually be open to an AI.

Hugs and Prayers

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Apr 12, 2017 06:39AM - edited Apr 19, 2017 05:33AM by obsolete

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Apr 12, 2017 07:17AM gracie22 wrote:

Obsolete, are you treating fungating tumors yourself, or were the tumors shown to you post surgery? If you are treating fungating wounds, the description sounds similar to what the OP's mom is seeing so I am guessing she has the same situation going on--what else would cause the holes? Personally, (my own opinion and everyone deals with their bodies in their own way), I would not want to have to deal with ongoing wound maintenance even if a no-drug decision was made. There have only been three posters that I can recall who are self-treating fungating wounds. It is such a time/energy suck that (from the little I have heard) does not result in healing. Why not surgery--while it is still doable--and at least have some time free to enjoy life a bit more?

Dx IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (FISH) Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right): Silicone implant
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Apr 12, 2017 07:41AM - edited Apr 19, 2017 05:31AM by obsolete

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Apr 12, 2017 08:07AM - edited Apr 19, 2017 05:34AM by obsolete

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Apr 13, 2017 11:17AM ShariP wrote:

As time goes on, I feel like I am putting the pieces of the puzzle together of what has happened with my mom. Two years ago, she found a lump. She was too scared to see a doctor because she is completely anti-medical establishment due to her traumatic history with doctors and medications. So she did a 180 and went the all natural route, trying to treat this lump herself. Last year, the lump hadn't disappeared and had slowly grown in size, and she still thought (or so she said) that it was nothing more than a blocked milk duct (she breastfed both her babies decades ago) and that she could still 'dissolve' the lump somehow, however now she was experiencing swelling in her lower extremities and back pain. She claimed these were 3 separate issues so she started taking multiple herbal and homeopathic treatments to combat the 3 symptoms: breast lump, back pain and swelling. 6 months ago, during a visit to the chiropractor for her back, she says the chiropractor was very rough and pushed my mom's back hard while she was laying on her stomach, and her left breast (the one now diagnosed as IDC) was pushed up against one of the steel bars on the table, which caused subsequent pain, swelling and bruising (hence the injury you asked about obsolete). From that point on, the lump began to grow faster, and the bleeding wounds started to appear, a few weeks apart. I think that trauma must have increased the rate of cell growth since the blood vessels were reacting to the injury and in trying to 'heal' the injury, this just meant the cancer cells were able to multiply and divide and grow at an accelerated rate. Now, because she has waited so long to see a doctor, her tumor has developed into an ulcerating or fungating tumor, which is what is causing the bleeding holes.

This is my theory, I of course don't have any medical training nor firsthand experience, but does this sound plausible?

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Apr 13, 2017 05:22PM - edited Apr 19, 2017 05:40AM by obsolete

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Apr 13, 2017 09:05PM gracie22 wrote:

Shari, that all sounds plausible, but the bottom line is that self treating her wounds won't cure them. Maybe share some of the info on life with a fungating tumor with her if you can. I know it may sound odd, but understanding the personal, practical reality of carrying around a wound that will become foul smelling and leak blood and other fluids may make an impression, even if the fear of death by cancer does not (Google around for info on fungating tumor--it is pretty awful.) Keeping up appearances is pretty key to most people and being repelled by the consequences of refusing mastectomy might sway her. If she does not want to do any drugs, fine. But if she can get the surgery while she is still able she will at least spare herself that misery. Beyond a certain point, surgery can't be done due to bleeding risks. She is not there yet since mastectomy was evidently still on the table. There is an older lady on these boards who has been contributing to a thread for years; her life mainly consists of caring for what she terms an ulcerating tumor. Who knows if she has BC, she has never actually seen a doc, but is elderly and alone and shares her life. Many posters are very kind to her as it is a good outlet for her and she will likely never seek any medical help. Her name is Abigail and she has used all manner of home remedies to treat herself. I feel for her, it is such a sad and scary life she leads, completely consumed with wound management. I don't want your mom to be another Abigail, kind and thoughtful though she may be. A link to that thread below. Perhaps your mom could give that a read to understand.

https://community.breastcancer.org/forum/121/topics/821754?page=1

Dx IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (FISH) Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right): Silicone implant
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Apr 13, 2017 10:59PM - edited Apr 13, 2017 11:02PM by Icietla

Shari, I am so sorry about this setback, her new unwillingness to have any medical treatment. I have to wonder, does she understand and accept that she has cancer, and that so far her Naturopathic Medicine has failed to help about it?

Here is a BCO thread relating to management of a fungating breast cancer tumor. This is not to upset you. This is to impress upon your mother that for now, she can choose avoidance of that much more uncomfortable condition.

https://community.breastcancer.org/forum/121/topics/845251?page=1

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Apr 13, 2017 11:17PM gracie22 wrote:

Icietla, yikes, that's hardcore! So awful for the patient and caregiver. Hope Shari's mom will spare herself that and I think such practical examples may help--especially of fellow travelers who have tried alternative treatment to no avail. Also would be great if Shari's mom could meet with an especially kind, compassionate doc. It sounds as if she had terrible experiences in the past and really needs someone she can trust.

Dx IDC, Right, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (FISH) Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right): Silicone implant
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Apr 20, 2017 12:42PM ShariP wrote:

Update 20 April 2017:

Finally, a little piece of good news. My mother has agreed to have a total mastectomy and is scheduled for surgery on May 11th, so 3 weeks from today. She has also agreed to discontinue her naturopath's pre-surgery protocol after I discovered through research and subsequently shared with her that one of the enzymes she was recommended to take 1-2 days before surgery is bromelain, which is known for its anti-coagulant (blood thinning) properties, not something you want when headed into surgery!!! I could not believe it when I discovered this, and it gives us something to follow-up on in terms of getting this person discredited. But my mother is terrified of the surgery, and though she is reluctant to admit it, I think she is also scared about how she will feel afterwards when, as she says, 'one of her major body parts is hacked off'. We have found a cancer wellness centre not far from where she lives, and she has an appointment with them next week, so I hope this provides a good support for her in terms of connecting with other women with similar stories to hers. Both my younger sister and I will be at the hospital, along with my dad, when Mom has her surgery, and we will all be there when she wakes up which she says means a lot to her, especially since my sister is taking time off work and is flying over 1000 miles to be here.

I just hope that once the surgery is over and she has recovered, that there is no recurrence, because I don't know if she could handle that, but since she refuses any follow-up treatment post surgery, I know that is a very real possibility.

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Apr 20, 2017 01:02PM MTwoman wrote:

Thanks for the update! I am SO very glad that she has decided to have the surgery and cannot believe the NP wanted her on a cocktail that included any anti-coagulant, holy cow! Through your diligence, concern and persistence you may not only have saved your Mom from years of distressing wound care and all that it entails but actually helped save her life.

Surgery is certainly terrifying for some people, so I am glad that you all have rallied around your Mom to show support. I think that the cancer wellness center will be able to support your Mom and let her talk to others who have/have had her same fears and concerns about what they may experience with the loss of a breast. It does help to connect to other women who have been through a similar experience. Great idea, so glad she is on board with that too.

Please try not to worry about recurrence. Celebrate her acceptance of treatment and let those future worries go (for now). ((hugs))

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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May 9, 2017 08:50AM ShariP wrote:

Update May 9th, 2017:

Since my last update, my mom has been officially diagnosed with deep vein thrombosis when they discovered 2 blood clots in her left thigh, her whole left leg was swollen and discolored, and the larger clot took up 7/8 of the artery in her leg. Although she was given Fragmin blood thinner shots for a week to prevent new clots from forming, she was hospitalized yesterday and today they are installing an IVC (inferior vena cava filter) to prevent the clots from potentially migrating to her lungs and causing a pulmonary embolism, or worse, to her heart. She is still scheduled for the mastectomy on Thursday, so your prayers and good thoughts are appreciated as she faces all these medical procedures that she refused for so many years, and now has no choice but to do.

It never rains but it pours is the saying that comes to mind. She is a strong woman, but this is a lot all at once.

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May 9, 2017 10:49AM MTwoman wrote:

Oh Shari! I am SO very sorry to hear that your Mom is now having to undergo even more treatment (but am happy that she is, in fact, allowing it). I'm sure she is frightened and overwhelmed, and that your support means more than she can say. Sending you light and ((hugs)). Thanks for letting us know how she is doing.

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Jun 1, 2017 09:42AM ShariP wrote:

Update: June 1, 2017

Since my last post, my mom has had a total mastectomy of her left breast, and they also removed 1 lymph node that was deemed cancerous. She is recovering fairly well from the surgery, but her DVT (deep vein thrombosis) has become a serious issue, especially since she has decided she no longer wants to take the prescribed anti coagulant. She complains that the drug is giving her side effects of feeling like her feet are on fire, to the point where she needs to ice them. She has also been drinking heavy alcohol while on this medication, and I don't know what effect those 2 factors combined might have I don't know if the burning feet are truly a side effect of the Fragmin, or a sign that her veins are dilating (perhaps too much so under influence of the alcohol) and the blood is quickly rushing around which is causing the hot feeling, though her blood pressure is still in the normal range. I just don't know, and to add insult to injury, literally, she insists that the doctor is just pushing the medication on her 'for the money she makes from the pharmaceutical company'. I told her that isn't how it works, doctors don't get paid by how many prespcriptions they write, that would be a total conflict of interest not to mention illegal and unethical, but she won't listen to me, she watches these videos and reads stories by fear mongering individuals who, guess what, have a 'miracle cure' for all diseases. Now she is saying she wants to resume her 'natural' methods, even going back to the naturopath (whom our family calls the psychopath due to the incredible damage she has inflicted on my mom's health and mindset.) The surgical doctor was understandably upset when she learned that my mom had stopped the Fragmin injections, and told her that she cannot remove the vena cava filter now because to do so would be life threatening, her blood clots are large and deep, and without the filter, it could be worst case scenario very quickly. What can I do to make my mom understand that she is literally playing Russian roulette with her own life?!? I had hoped that after realizing that she lost a body part (i.e her breast) due to the fact that she waited too long to seek medical intervention, that she would be more welcoming and accepting of what modern medicine has to offer, but it seems she just wants to go right back to doing what put her there in the first place! Argh! :( It is to the point where I don't even want to talk to her right now because I am so angry, yet I also know it is her life and her choice and since she may not have much time left I feel like I need to be there for her as much as possible, but I don't want to hear anything about her 'natural' ways anymore. She has also refused any follow-up treatment for her cancer (the doctor wants her to do some radiation), which we kind of expected, but it still doesn't make it any easier :(

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