Claire Innes Member Story Spotlight

Claire Innes Member Story Spotlight

Spotlight on Our Diagnosed Members: Claire’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

Hello everyone, We’ve been reading some of the posts about your journeys. It’s been helpful to see stories familiar to us. After being diagnosed with MpBC we’ve found it difficult to find information I can relate to.

I suppose I should tell you about my own up and down experiences. Well in July 2016 I started experiencing “leakage” from both breasts. After ruling out pregnancy, I visited the doctor. My bloods were taken and I was told I had vitamin D deficiency and that my body was just naturally changing with age. At this time I was 40.

Fast Forward to January 2017 and I discovered a lump on my left breast. Again I went to the doctor. I was given a physical examination and told I had a cyst. I was told that I had lumpy boobs and that if the cyst was stil causing discomfort then I should return in 6 weeks during a different stage in my menstruation cycle. After 4 weeks I was back at the doctor. After another physical examination I was told again it was a cyst and once again to return in 6 weeks.

I was, by now, in a fair bit of pain. So back to the doctor I went (March 2017).Although still adamant I had a cyst, because of the pain I was describing I was sent for a mammogram……. as you all will have guessed by now, no it wasn’t a cyst. Ultimately I was diagnosed with stage 3 ER+ invasive ductile BC…..they also discovered a smaller lobular carcinoma on my right breast.

I had chemo from April 2017 to August 2017 (Fec and Docetaxel). Chemo was hell. I contracted sepsis and was neutropenic 3 times🤦….but ultimately got through it. A double lumpectomy followed by 30 rad sessions in Dec 2017 and I was given the all clear!! 🎉🎉

Over the following months after my recovery, my family and I completed various activities to raise funds for the cancer organisations that had helped us. Including hikes, marathons, mountain climbs and in May 2018 , a 100 mile trek through the gorgeous Scottish Highlands that I finished with my brother. Life was there to be lived and I wasn’t holding back .

In January 2019 I started having shooting , stabbing pains from the centre of my chest to my left shoulder. I contacted my cancer team and met with my consultant who oversaw my previous treatments. My last mammo had only been 6 months prior and was found to be normal. With that in mind and after physically examination, he said he thought it could be fluid, caused by the full lymphnode removal I had on the left side…..no such luck….. between a bit of back and forth between lymphedema clinic and my GP, I discovered a lump in the centre of my chest I was given a chest x-ray ( normal) and referred for ultrasound that confirmed a tumor in the centre of my chest. A needle biopsy later and I was told that once again I had cancer.

CT scan later confirmed metastasis to my breast bone and liver. My full diagnosis was metaplastic squamous Breast Cancer. I have been told it’s mostly triple negative but also with a low ER and PR score of 3.
I was also given the devastating news that my cancer can’t be cured and that average data showed I had a life expectancy of 12 to 18 months.

Now I plan on bucking the trend! And want to give myself the best chance at life I can! I want to see my 3 boys (13 year old twins and 10 year old) grow up and marry. I want to grow old with Danny and be happy with. I have so much life in me that I can’t believe this is happening again.

I’ve had my first chemo ( carboplatin) on a 3 week cycle and I’m hoping I have positive response.

The pain from tumor is constant. Ive been prescribed morphine, but that has its own issues 😒.

I’m keen for all the information I can get on my cancer and praying that my treatment is effective.

I try to stay clear of Dr Google and tell Danny to do the same, but he seldom listens 🙄😉

I feel for my family and friends, who have to go through this again with me. I wish they didn’t have to.

Thanks for listening.

Claire Innes

2017, Squamous

Katie Member Story Spotlight

Katie Member Story Spotlight

Spotlight on Our Diagnosed Members: Katie’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

With enormous sadness, we recently had to say goodbye to the most amazing woman – Katie Martin. Katie was a bright light and dazzle of joy. She was fun, loving and a group admin for our girls. She never gave up and loved her family immensely.

This is her story.

Katie had a very very rare and aggressive form of Spindle Cell Neoplasm which they thought was benign at first. Then they thought it was Phyllods type and by the time it was removed it was 8cm and Stage 3. She found this in 2012 and had a lumpectomy. But in 2013, it came back quickly in the same spot. In 2014, it came back again in the other breast and then she had a bi-lat mastectomy. In 2015 in came back again in the lymph nodes under the arm. By this time Katie had done AC/ Taxol/ Carboplatinum chemos.

In our group, we had seen this recurrence with Spindle Cell before and we lost a few girls like Penny and Katherine to the exact same strand of metaplastic. The other girls all passed on the third recurrence.

We called Katie our Miracle Girl as after cancer returned three times she decided to stop chemo and turn to cannabis. It worked and she was NED for one year. She survived 3x recurrence and we were all so happy for her. However, in 2016 the cancer jumped to her lungs. She had a section of her lung removed and again was out of huge danger. She kept on smoking the cannabis – but she moved to the medically approved one which was not as effective. Her lung cancer came back and Katie tried radiation. The chemo didn’t work 3 times and she didn’t qualify for a lot of trials. Because the chemo didn’t work so often, she was reluctant to have it again. However, the cancer spread and got out of control. She passed this July 2019 and everyone is in shock. No one deserved to live more than Katie – she fought with everything that she had.

Towards the end, Katie had to start chemo again and the symptoms were out of the control. The cancer also didn’t respond and grew extremely quickly. It got to the size where it impacted on all her other organs and Katie died quickly afterwards.

Katie – I just read all of your messages again. I loved the way you had Stage 4 Cancer and consoled me when my dogs died. You were a giving and wonderful person whose memory will live on forever. Thank-you for being in my life XX
-Written by Bena Roberts

Katie Martin

Spindle Cell Neoplasm

Tanya Gendle Member Spotlight Story

Tanya Gendle Member Spotlight Story

Spotlight on Our Diagnosed Members: Tanya Gendle’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

The following is a story on Tanya Gendle, written by Megan Doherty published in the Canberra Times on 16 November 2018. Full article HERE.

Tanya Gendle is fragile, strong, graceful, joyful and distraught as she sits on the precipice between life and death.

After being diagnosed with breast cancer in both 2005 and 2015, the disease returned again last year and spread to her liver. The super-fit personal trainer has endured chemotherapy, radiation, a double mastectomy, and tried a strict ketogenic diet.

But nothing is helping. The cancer spread to her skin last month. It is stage four. Terminal. She is now receiving palliative care in her home in Gungahlin.

“I’m not afraid of dying,” she said.

“I understand what’s going on. I think if I wanted to leave a message to people, it’s just to find a place of acceptance, because you can’t change it.

“What do I do for acceptance? I’ve worked a lot with a counsellor in that regards. I guess I’m lucky because even though I’m 40, I’ve lived a really full life.

“There’s been, like everyone else, difficult times, but the last 10 years of my life have been really good. And I don’t need to make amends with everyone, because I’ve done all that healing. And there’s nothing I have a burning desire to do because I’ve always done what I wanted to do.

“Like my girlfriend said, ‘Tanya, you’ve lived life in fifth gear’. And I have. I know I’ve done the best that I can.”

Ms Gendle was Julia Gillard’s personal trainer when Ms Gillard was prime minister.

Ms Gillard, now chair of Beyond Blue, was as moved as anyone when told Ms Gendle was now in the final stages of her life, and spoke about the impact Ms Gendle had on her during her years in The Lodge.

“Very early in the morning we would do yoga, box or other forms of training. Of course, the physical exercise did me good but Tanya’s impact was broader than that,” Ms Gillard told The Canberra Times.

“She is a free spirit with a huge capacity for empathy and caring. Our morning conversations became very important to me.

“Tanya decided to be a personal trainer as a result of becoming fascinated by every aspect of physical, mental and spiritual health following a fight with breast cancer as a very young woman.

“I am very sad her cancer has returned so aggressively. My thoughts are with her.”

It’s not as though Ms Gendle has not fought. Knowing she had the BRCA1 gene and was more susceptible to cancer, she had both breasts removed and then reconstructed in 2015 at Canberra Hospital.

The plastic surgeon who did the reconstruction, Ross Farhadieh, was inspired by her strength.

“In practicing the art of medicine, I am constantly humbled by my patients. By their fortitude, their strength and their content of character,” Mr Farhadieh said.

“Some, like Tanya, leave a lasting impression from the beginning. Her resilience, her kindness, her sense of humour and her generosity of spirit remain inspirational.”

Ms Gendle found another lump in her breast in 2017 and underwent two more surgeries, more radiation therapy and dabbled with a ketogenic diet, hoping it would help. She took leave without pay and focused on having good times with her husband John de Ridder. She took part in a clinical trial of immunotherapy. But the cancer was unrelenting, attacking her liver and skin. It was terminal.

“I was devastated. I just don’t know what to do. It was the hardest diagnosis,” she said.

It was all the more cruel as last year she also qualified to teach student fitness instructors at CIT in Bruce, a long-held ambition. She taught for three terms, but had to stop because the pain was too much.

“I’ve had some students come to see me which is really beautiful because I only taught them for eight weeks,” she said. “You don’t realise the impact you’ve had on people in such a short time.”

The palliative care Ms Gendle is receiving is all about managing that pain.

She remains focused on living as she is dying.

“I know there are women out there, especially on the [online] forums who are trying so desperately and just can’t find acceptance, and when it gets to this part of the journey, when they’re dying, they’re busy trying to find the cure, rather than just enjoying the time,” she said.

“I’ve been off work since October and every day I’ve had people here. People just want to connect with me and it’s been really beautiful. Really beautiful.” She breaks down in tears.

“I didn’t realise how many good friends I’ve had and they’ve all been able to be here with me and they want to be here with me,” she said.

“Last night we had a big party [for the Melbourne Cup] and we drank lots of champagne. So, if you can accept it, you can allow people to come to you and let them say what they want to say and let me say what I want to say to them. It’s been amazing.”

Her husband John de Ridder says he is trying to take each day as it comes and to support his wife as much as he can. He does not want to dwell on the inevitable.

“When I start to think about her not being here, I’m heartbroken,” he said.

Ms Gendle says she is taking comfort, in her own time and in her own way.

“I will miss people, the physical side, but I have a strong belief in the after-life,” she said.

Tanya Gendle with husbandTanya Gendle Member with terminal breast cancer spotlightTanya Gendle Member with terminal breast cancer spotlightTanya Gendle Member with terminal breast cancer spotlightTanya Gendle and her pet dog

Tanya Gendle

2005

Terri-Louise Frnka Member Story Spotlight

Terri-Louise Frnka Member Story Spotlight

Spotlight on Our Diagnosed Members: Terri Louise’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

Terri-Louise Haugen Franka

February 12, 1979 – September 10, 2018

A note from The Trustees of MpBC Global Alliance, Inc.: It is with great sadness that we announce the passing of Terri-Louise Frnka. Terri was working on this message when she passed, and wanted to make sure that we published her story. The most disturbing lesson here is the numbers diagnosed in the 30 to 39 age range. Women in this range are barely on the radar for Breast Cancer and many are misdiagnosed with mastitis if they are breast feeding. Please honor Terri by reading about this courageous young woman, wife, and mother.

We all think we know about breast cancer awareness until it happens to us. When you have breast cancer you learn soo much that isn’t vocalised. For example before I just assumed it was under one umbrella. Little did I know there was triple positive, triple negative, ER/PR+ Her2-, ER/PR- Her2+ and whatever other combinations. Of course you never see that in the ads during breast cancer month.

We have the pink ribbon campaign, however there is no real true awareness brought to the table. It’s all pink washing. Research is sooo desperately needed. Women and men both can get breast cancer. However you don’t see that during the month of October. Im not writing this to shame the pink washing campaigns exactly. But I feel the need to truly raise awareness on the cold reality of breast cancer.

My name is Terri-Louise, I was diagnosed October 6, 2016 with invasive ducal carcinoma. While originally I was first diagnosed stage 2b, after my surgery that changed to stage 3a.

Before I got diagnosed I was starting to wean my daughter off breast milk. I was having so much trouble with it at that time, when I first found the lump I assumed it was mastitis. Because surely it wasn’t cancer because I was breastfeeding there was no way I could have breast cancer right? Wrong, one of the lies women are told to shame them into breastfeeding.

Breast cancer can happen to ANYONE at any age or any gender. It doesn’t discriminate at all. You could be transgender, male or female. It simply doesn’t care. It just happens. While breastfeeding or being a male can lower your chance it still can happen.

My daughter was almost eleven months old when I originally found the lump. I blew it off, not only that the nurse I spoke to when I asked if there was something more I could do if it was mastitis. Her response was suck it up and massage it harder. Of course she felt like shit after she found out I had cancer. I also had to fight to get my mammogram, thankfully I didn’t have to go in first to get it like they wanted me to.

Long story short I started chemo October 17th on my youngest sisters birthday, I had four rounds of A/C chemo aka the red devil as we call it. I had it every two weeks, after that I had twelve rounds of taxol every week. While I waited a month my tumour grew rapidly. After I had surgery on April 17th, I learned I had a very very rare type of breast cancer. Called Metaplastic breast cancer, only less than 1% of all the diagnosed breast cancers turn out to be Metaplastic. And typically they are triple negative, but not me I was ER/PR+, so I was even more rare! Hooray for me!

I then had radiation let me tell you I rather do chemo then radiation any day of the week. Why you ask? I was burnt pretty badly my skin was destroyed. Imagine being burnt badly and ripping that skin off and getting burnt again. And then repeat that 3 more times. So yeah radiation suuuucked. Not to mention because of how badly I was burnt, I lost my expander. The skin was too thin and there was no saving it after getting cellulitis twice.

I lost my expander on December 4th, after previously being in immense pain. If they could bottle that pain up I’m almost positive if someone wanted to torture someone that was the way to go. Try to imagine all the different types of pain all at once. It burned, throbbed, stabbing, twisting and whatever type of pain. I was miserable. Everyone wanted to blame the other. Only doctor I couldn’t get into was my plastic surgeon because of the front desk lady she was he’s completely booked. I finally caved and went to the ER and he was called. I had an appointment the next day to see him. He was yeah it needs to be removed like yesterday. In my head I was no shot Sherlock.

Here I thought I was still in remission twelve days after surgery I had my CT Scan. The scan was typical routine scan. We didn’t expect the dreaded news I received, it seemed as if my cancer had indeed returned. Not the news I had wanted to hear six days before Christmas. Merry Christmas your cancer has returned to your lungs and sternum. They scheduled a biopsy of my lung, the weekend before my biopsy I felt ANOTHER lump. My thoughts were fuck. It literally was right before my biopsy. I called asked for them to biopsy my lymph node too. I got two biopsy’s that day.

So a week later Jan 9th I was informed that my cancer indeed had returned and now I was stage 4. Since I had my hysterectomy on Sept 14th, my cancer now was Triple Negative, but still was Metaplastic, hooray for me!! Not. I was also told after my husband and I asked, worse case I had 6 months to a year. I don’t know if that was with treatment or if that was with out. But my doctor said there is a lot of things they can try to prolong my life if they can. We just gotta find what works for me. The DAE trial/regiment, has a 40% success rate.

So let me explain something more about Metaplastic breast cancer, again it is really rare less than 1% of women have it. So far as of now we don’t know of any men that have it. The thing is the cells in metaplastic aren’t your a typical breastfeeding cancer cells. Depending on the type of metaplastic breast cancer you have it could have cells you see in lung cancer, or skin cancer. The tumour is always misshaped. My first tumour looked like a jelly bean at first then turned into a pyramid. Not only that it grows rapidly and a lot of the time is chemo resistant. Both times I did chemo my tumour barely responded.

I started chemo this time on Jan 18th and had three rounds of the DAE regiment. Not long after I started I felt a pimple on my head, it was near the end of Jan. I thought it was a pimple or ingrown hair. But it started to grow, around the second round of chemo it had grown more. So they biopsies it, and yet again cancer same type. sighs I finally got it removed on March 8th. It had grown from the size of a pimple from the end of January, to two and half inches on March 8th. It was very rapid. I was taken off the DAE drug regiment on April 3rd. The treatment wasn’t working. So here I am scared to death because the DAE trial isn’t working.

At this point I’m scared for my little girl, my oncologist made an appointment to see a drug trial doctor. I don’t know what trials they have for me. I’m trying to remain positive. Which I’ve been trying to do this whole time since day one. My little girl needs her mama. It’s why I made my Facebook page.

So I met with the doctor, he suggests the DART trial which is in phase two I believe. It’s Immunotherapy if two drugs, and much to my relief I actually get the drugs. I was scared it would be a blind study. April 19th I started the trial, I get one drug every two weeks and the other every six weeks.

So far some days the tumour in my armpit I swear it’s shrinking while other days I swear it’s growing. All I know is I’m fighting for my life and hoping each day I live long enough to see my little girl graduate. High school and get married. Those are my goals. If I live long enough for her to remember me and how much I love her.

If you truly want to help fight breast cancer donate to metavivor.org, bcrf.org, or mpbcalliance.org . We need your help if we are going to find a cure for us. Please always think twice before you donate.

To read more about Terri-Louise’s story, go to her Facebook page Fight Mama Fight HERE.

Terri-Louise Frnka group member Fight Mama Fight March 6, 2017

March 6, 2017

Terri-Louise Frnka group member Fight Mama Fight March 2018

March 2018

Terri-Louise Frnka group member Fight Mama Fight June 27 2018

June 27 2018

Terri-Louise Frnka group member and her family Fight Mama Fight July 4 2018

July 4 2018

Terri-Louise

October 2016, Metaplastic ER/PR+ breast cancer

Patti Member Story Spotlight

Patti Member Story Spotlight

Spotlight on Our Diagnosed Members: Patti’s Story

My Personal Cancer Journey With the BRCA1 Gene

Patti Hennessy is a wife, mother, grandmother, sister, daughter, and friend. She is the everyday woman who was living and loving her life when she was broadsided by the devastating news that she had cancer. In 2011 Patti began her battle with ovarian cancer and was surprised to learn that she carried the BRCA1 gene. This gene would impact the entire family. In 2016 early stage breast cancer was discovered; however, it recurred locally less than one year later. Just six months after that Patti learned the breast cancer was back, this time in the lung. It was discovered that it was a rare breast cancer known as metastatic, metaplastic, triple negative breast cancer.

Mike and Patti Hennessy attended Rider University together and married in 1983. Patti worked as a paralegal and as an event/meeting planner for Johnson & Johnson’s dental division until they started their family. Patti stayed home raising their four children, Shannon, Ashley, Michael, and Christopher, now all involved in the family business. Meanwhile, Mike, who was born into the medical media business, started his company, which is today known as Michael J. Hennessy and Associates, Inc. In 2011, Michael J. Hennessy Associates, Inc. acquired the Miami Breast Cancer Conference®. Little did the family know that a short time later this oncology conference would become one with a very personal connection. Patti is the heartbeat of what makes this particular conference so very important to the company. Saturday March 10, 2018 , as keynote speaker, Patti shared her personal journey battling cancer.

Patti Hennessy discusses “My Personal Cancer Journey With the BRCA1 Gene”

Patti

Diagnosed Ovarian 2011; Metaplastic 2017, Squamous subtype

Jeanie Member Story Spotlight

Jeanie Member Story Spotlight

Spotlight on Our Diagnosed Members: Jeanie’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

Hi fellow Metaplastic girls. I’m Jeanie (or Jeanette for doctors, dentists and anything official!). I’m 64, married for 42 years to my lovely husband with two grown up children who are both married with kids of their own so I have 5 wonderful grandchildren. I live in Chester in the UK.

I was diagnosed in March 2016 with Metaplastic HER2+ breast cancer. As we all know Metaplastic breast cancer is very rare (<1% of all breast cancers) and the HER2+ variation even more rare ( I think only 10% of that so <0.1% of all breast cancers)

My cancer was detected by a routine mammogram for which I am eternally grateful. I couldn’t feel a lump, nor could my surgeon. It was only 7mm when measured on the ultrasound but I was told that due to the aggressive nature of this type of cancer I would have immediate surgery followed by chemo and then radiotherapy. Surgery was done within 2 weeks of diagnosis followed by FEC-T chemo then 15 rads. This is the standard treatment in the UK.

My daughter was about to have her third child ( my 5th grandchild) at the time of diagnosis so one of the hardest thing was to tell my kids as I didn’t want them to worry about me. I did my own crying pretty early on in the process then found that every time I told someone else about it they would start crying and I ended up trying to comfort them!!!

In the end once I’d told my family and close friends I decided to use good old Facebook as a communication tool, giving regular updates over the following months. I tried to emphasise that I wasn’t doing it to get sympathy, just to give everyone the info without having to have zillions of individual conversations. My friends and acquaintances gave the feedback that they loved this way of doing it because I was very open and they felt part of my journey (hate that expression but it suits!) and that they learned such a lot that they wouldn’t have liked to ask.

Anyway I went into chemo with the view that people made a fuss over nothing and that I’d sail through it as I am such a strong person. How wrong was I!!!! Obviously my body just doesn’t like chemo. I was in hospital on every single chemo with high temps and on several occasions being severely neutropenic (32 nights in hospital in total). I also had a bad reaction to the Filgrastim injections ( think these are like the Neulasta injections in the US) and had really scary chest and back spasms, so bad that I had to call an ambulance on one occasion and my oncologist stopped them after that. To add insult to injury I had a huge seroma from my two surgeries (lumpectomy and then lymph node clearance). This was a huge ball of fluid under my arm that had to be drained every week and sometimes twice a week. When my chemo finished they decided to do further surgery to try to resolve the seroma. Unfortunately this didn’t work and in addition I then got an abscess on the surgery site and ended up in hospital with sepsis ( you couldn’t write this could you?). Luckily during radiotherapy the seroma decided to start behaving itself and stopped filling up but the radiotherapy itself resulted in quite bad burns despite following all the correct guidelines and taking really good care of my skin.

However bad it all seems it came to an end and it’s amazing how quick you recover and get back to normal (it’s a new normal however). I still have some pain and get tired easily but do most of what I did before. I will now just have yearly mammograms which worries me a little as I’m worried that either I may run to my breast care nurse too often unnecessarily or do the opposite and ignore symptoms I should complain about. Throughout the whole process our wonderful National Health Service has been excellent and the treatment I received has been second to none. Apart from the actual medical treatment I have had unlimited free access to support services such as counselling, meditation courses, massage etc.. Above all my family and friends have been absolutely wonderful and I can’t thank them enough but apart from that I’ve now got a whole new set of friends that I have met along the way who have also been through it and who just ‘get it’ without any explanation. We have regular meet ups and can talk openly about anything.

I now live life with a different attitude. I don’t know whether I will stay cancer free for a few months, a few years or forever so I find I don’t want ‘things’, I want experiences.

Below are some photos of me before, during and after treatment.

Jeanie Member Spotlight Before TreatmentJeanie Member Spotlight During TreatmentJeanie Member Spotlight Focus Image

Jeanie

March 2016, Metaplastic HER2+ breast cancer