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TC chemo 4 vs 6 cycles
Hello I’d like to hear from anyone who has had more than 4 cycles of adjuvant TC. I’m coming up to cycle 4 next week and I still don’t know whether that will be it or whether I will have to do more, because my oncologist has been on leave since straight after my first cycle. I’ve had a different oncologist and he has been consistory saying 4 but now is back tracking and saying it will be up to the other one! She won’t be back until early April, just before cycle 5 is scheduled. I am finding the side effects and mental toll very challenging. The uncertainty around how many cycles is playing into this because I can’t give work a definitive answer of when I’ll be back. I’m also a single parent and the fatigue is crippling. So I’d like to get an idea of in what cases would 6 cycles be given? If you had 5 or 6, why was that decision made? And what questions should I be asking of the replacement oncologist at my appointment next Tuesday to get some certainty around the timeline?
Surgery Decision
Hi, I'm 40 years old and was diagnosed with Stage 2 Triple positive cancer in my left breast in December last year. The core biopsy showed an invasive carcinoma associated with solid DCIS with lobular cancerisation. Both breasts are quite dense which has made each imaging study very tricky report. The actual tumour itself didn't look too sinister on mammogram and ultrasound, it was my decision to push for the biopsy as something just didn't feel quite right. During the appointment with my surgeon to put a surgical clip in, both her and the radiologist had quite a heated discussion on what was seen on the MRI as there were a few suspicious areas in both breasts but they couldn't agree on what was what - so more slips and biopsies were done. I am halfway through neoadjuvant TCHP treatment and am due to see my surgeon to discuss options in early May. I'm still awaiting genetic testing results but regardless I really want to push for a double mastectomy and reconstruction. I know this may sound quite aggressive but I think for my mental health and piece of mind alone this is the best option. I'm not sure I can handle the anxiety for the next 20+ years each time I have a screening appointment. I've spoken to a number of women who were diagnosed at a similar age, who have had different cancers appear 10+ years after treatment and have required the mastectomy anyway, which I'll be honest has spooked me a lot. Just wondering if anyone else is or has been in a similar situation? How did the discussions go with your surgeons? Thanks you so much for reading this lengthy post :)A MUST READ IF FACING MASTECTOMY EARLY BREAST CANCER DIAGNOSIS DCIS LCIS
I am writing this letter in the hope that the following story will help anyone facing a mastectomy or an early diagnosis of breast cancer. Women are being diagnosed with breast cancer every day and not all of them are provided with the information required to make informed decisions. A 42 year old mother of one is diagnosed with early breast cancer at a Brisbane Breast Clinic, August 2013. After receiving her diagnosis from a doctor at the centre she is advised by the doctor to make an appointment with her General Practitioner to attain a referral for a surgeon to have the cancer removed. Her referred surgeon performs a lumpectomy and then suggests the best treatment option for her cancer is mastectomy. She believes she has all information required to make a decision and elects to have a mastectomy four days later. SHE HAS THE RIGHT TO A BREAST RECONSTRUCTION AT THE SAME TIME AS MASTECTOMY. SHE HAS THE RIGHT TO A SKIN SPARING MASTECTOMY. SHE IS A POSSIBLE CANDIDATE FOR A NIPPLE SPARING MASTECTOMY. BUT SADLY SHE IS NEVER TOLD! This is the true story of my friend Lisa. She is currently enduring the emotional suffering caused by not being fully informed of her options. I now know that this is not an isolated case as I know many more women are having this same experience in Australia. Six weeks after Lisa's surgery I too went to the same Brisbane Breast Clinic to have a mammogram. I am a 38 years old mother of two, I had no known symptoms or lumps and no strong family history. Lisa's story saved my life. I was diagnosed by the same doctor with early breast cancer and advised to seek a referral from a General Practitioner. Through this experience I discovered that we currently have surgeons in Australia who are using advanced and accepted techniques like skin sparing and nipple sparing mastectomy that can effectively treat cancer without disfigurement. Both types of surgery combined with reconstruction are helping women preserve their breasts in a way that improves their quality of life after receiving a breast cancer diagnosis. I also learnt that the REFERRAL LETTER was the key determinant on whether or not I would be informed of my options. My first treatment recommendation from a surgeon was mastectomy with no reconstruction. A breast reconstruction, Skin sparing and nipple sparing mastectomy were not an option at the same time as mastectomy. My second treatment recommendation offered by a different surgeon was mastectomy with immediate reconstruction, skin sparing and nipple sparing mastectomy. How could two surgeons in Australia have such vast differences in approach to the treatment of early breast cancer and why didn't anyone tell me? I have leant that not all surgeons in Australia are trained nor practice the latest procedures that are widely accepted and used in Europe and America for the treatment of breast cancer. Receiving a diagnosis of breast cancer is one of the toughest moments a women will experience. You feel compelled to make quick decisions. Hence, I can't believe more guidance is not provided when first diagnosed to enable women to select surgeons based on known treatment alternatives. That's why it is so important to have complete, up to date information and know all of your options before you consent to any type of surgery. You are entitled to ask questions. Your breast care nurse will not tell you about known treatment options, nor can they tell you which surgeon to go to - they are not allowed. But if you want to know who performs skin sparing or nipple sparing surgery ask them and they will tell you. If you don't get the answers you need on a particular procedure then keep pushing for information. Keep searching for the information you need until you get the information you beleive that you need to make a decision. On August 17th, 2010 a new law was passed in New York to ensure that breast cancer patients from all socioeconomic groups are informed about their options regarding breast reconstruction. The law mandates that all women are informed, prior to undergoing a mastectomy, about their right to reconstruction and the types of reconstructions that are available, even if this means referring women to another facility or hospital system. This bill went into effect Jan 2011 and already other states are following with similar legislation. Breast cancer patients are being informed of their options and told where to get the procedures they prefer. Surely, in Australia we do not need to legislate or pass a new law to inform women with breast cancer of their options. It's a fact that in Australia, around 5000 women have a mastectomy every year, but only 6% to 12% of these go on to have reconstructions. This compares with 42% of women in the US and 16.5% in England. We need to ask ourselves - is this because when diagnosed with breast cancer women are not being informed and empowered to know all of their treatment options in order to make informed decisions. After being throgh this experience I hope that this information will help anyone who is facing a mastectomy. If you are facing a mastectomy get a second opinion and consult with a plastic surgeon as well as a breast cancer oncologist. Every women deserves to know there options and I am disgusted that women will continue to be blind sighted by certain surgeons, nurses and doctors who do not feel compelled to tell women about certain types of reconstructive surgery. If you are in a remote area of Australia my heart goes out to you. If you are facing a mastectomy it is in your best interest to see a Breast Cancer Oncologist who specialises in Breast Cancer in your nearest city. Knowledge is power. I wish anyone facing a breast cancer diagnosis all the best and I hope that I can prevent what happened to my friend Lisa from happening to anybody else.
DIEP Surgery
Hello Pink Sisters I had DIEP surgery late last year and will be undergoing phase 2 in a few months. I can’t help but be frustrated by the back fat pockets that have appeared since surgery. My diet is well balanced and I regularly exercise. I’m hoping it’s not because I’m getting old and saggy. My surgeon said he wouldn’t be able to remove it under the cancer medical umbrella. It would be classified as elective surgery because he doesn’t think that it’s a result of DIEP surgery. Has anyone experienced something similar and had it removed in phase 2 of DIEP surgery?
Ca 125 test
Hi all - after finding a lump in my armpit I have gone to see a GP (not my usual one) to get a referral for an ultrasound. I was given the ultrasound referral and blood test referral (including for Ca125 which I don’t think I have been tested for before). Has anyone else had this Ca125 test before? My background in HR positive breast cancer; lumpectomies and double mastectomy (with immediate reconstruction)
Oncotype DX testing
Hi. I was diagnosed with her2 negative oestrogen and progesterone positive LC in early Oct 24 and have had two surgeries to remove a 9cm tumour and lymph clearance with one lymph node having 9mm of tumour in it. Im planning to do oncotype dx testing to inform if I should do chemo and wondered if anyone had any tips for dealing with results or advice re the test?Belly button after DIEP
Hi Network, I’m 8 weeks post-mastectomy and DIEP reconstruction following a DCIS diagnosis. Overall, recovery is going well—except for my belly button. I developed an infection 10 days post-op, which landed me back in the hospital, and since then, it just hasn’t felt right. It pulls and hurts when I move, especially on one side. I’ve raised my concerns with my surgeon, breast nurse, and physio—they all say it’s normal. But you know that feeling when something just doesn’t seem right? I’m reaching out to see if anyone else has experienced this—does the belly button just take longer to settle during recovery or should I get another opinion? Thanks in advance x
Joint pain, muscle stiffness
Hi all I am 5 weeks post radiation for invasive lobul ar carcinoma. 6 lymph nodes removed. I am on letrizole. I started getting joint pain and muscle stiffness in my knees shoulders hips and muscle tightness. When I mentioned it to radiation doc she said it would not be from radiation to breast area. Has anyone experienced similar symptoms. I had a mastectomy. No chemo.
Cold Capping and hair loss experience with TC chemo
I went for my first TC chemo session with cold capping on a Paxman. I've got wavy coarse hair, that's not particularly thick. Conditioner and water was applied with a focus on the top of the head. I was expecting a brain freeze but came nowhere near that in the 2.5 hours of the cold capping. I'm a skier so I'm comparing it to having damp hair on the snowfieds. The nurse said only about 20% of his patients keep their hair. I'm now paranoid it was ineffective and am sitting at home with a bag of ice in a large ziplock affixed to my head, which feels colder than the cap. Has anyone had a similar experience with cold cap not being as cold as you expected, but still had reasonable hair retention after that session?
