Questions around removal of the primary in metastatic treatment
I am VERY new here so I hope this is not a silly question..... I have been diagnosed and one of my first shocks was they were no longer going to remove the primary cancer. I understand they say the data does not indicate significant impact on survival however this data is also questionable on integrity as its so old too. Has anyone also read about the removal of primary and the impacts and has anyone had a doctor willing to consider this? Or even address the conundrum of the data integrity vs the papers being written into this?
6 years cancer free...then I'm not
Hi all, just wanted to share a little about my journey and was also wanting some advice... My story begins in December 2016, found a lump in my right breast after running my first marathon (lost quite a bit of weight with all the training). fast forward 11 surgeries-lumpectomies, sentinel node biopsies, egg harvesting/preservation, bilateral mastectomies and insertion of silicone implants, removal of said implants, cesaerean section, hysterectomy, bilateral DIEP reconstruction and fat grafting and we get to 2022. I had my DIEP recon in 2021 (most horrific experience of my life-had to be resuscitated twice and in ICU for a week). After all that, I decided to celebrate the end of my cancer journey with my second marathon (great ocean road-bucket list and definitely recommend). Unfortunately, December 2022, have found out I have had a recurrence of the cancer (despite bilateral mastectomies and reconstructions) and it has now spread to my lymph nodes. I really don't know how to feel about this...so much has changed for me in the last 6 years since my diagnosis, I went from being happily married with no kids the first time around, to now seperated, single parent to a beautiful 5 year old that starts school next year, and a completely different job. I guess my question to you all is...is there anyone else out there who has/is going through the same? I know that I have both Chemo and radiation plus multiple surgeries in my immediate future. I feel...tired...like I really just don't know if I have the strength to endure this again. I am considering not going through any treatment and enjoying the time I have left with my son. I don't want to go through all the treatment and lose the quality of life I have now, especially if I could potentially die on the operating table anyway. I was 31 when first diagnosed and am 37 now, any thoughts?
Surgery Option or Not?
Hi Everyone, I was diagnosed de novo Stage 4 with breast, lymph node and bone/spine mets in Oct 2018. I've had really good response to treatment with Letrazole/Ribociclib/Denosumab whereby the breast lesion and lymph nodes are barely visible on my last CT/Bones scans in May, they've shrunken significantly. My bone/spine mets is relatively inactive and stable. All good, yay! :) So today I saw my Breast Surgeon for a courtesy progress check and she is now offering the option of surgery to remove what remains of my breast lesion and possibly "Level 1" lymph node removal. Am having an ultrasound next Thu to actually find out what is remaining, as not much is showing up on the scans and on physical exam today, she couldn't really feel anything either. She was rather taken aback at my response to treatment and said I had "responded remarkably well", double yay! :) So my questions are: 1. Would you have the breast surgery? I'm told it would be "minor surgery"/day job, no drain, 1-2 weeks recovery, they remove the lesion with a wire, so no big cuts. I would potentially have shooting pains that last a few seconds from time to time, most likely forever, post surgery. 2. Would you have the lymph node removal? Depending on ultrasound results, but she's thinking to do only a Level 1 lymph node removal, which is the lowest level of that type of surgery. She said post surgery, I may get numbness in armpit/upper arm from nerves being cut, apprx 15% /lower risk of getting lymphodaema, may get some cording in my arm which could be resolved by phsyio. She spoke with my Onco whilst I was seeing her. He's on the fence and said they decision is up to me. I would just need to go off the Ribos' for 2 weeks prior to surgery. Post surgery, I'm not sure what happens yet... may depend on the lymph node prognosis as well I guess. I may need some radiation therapy... chemo wasn't really mentioned at this stage. I was thinking (but to be discussed), I'd just go back on the drug therapy as per before. I know there are no guarantees that the cancer would be entirely removed and it could come back in the breast/lymph node. And they of course can't remove it from my spine. The bonuses would be that I would get some definite pathologies post surgery of the lesions and potentially I wouldn't have to deal with large tumours in my breast/lymph down the track, and then just focus more on holding the cancer at bay in my spine. And I know it could eventually show up elsewhere as well. But removal, would be just that little bit less cancer in my body. I've got to have some more discussions with the Surgeon and my Onco, but I'm leaning towards doing the surgery at this point. However, I'd really value any thoughts from anyone out there on this. Has anyone done this? What have been your experiences? What are the gotcha's I need to look out for? Or should I not do it? What do you think?
Not Driving due to epilepsy from brain surgery
Its been a while since I have written as I have not been in a good place as I have lost my independence. I rely on a local community transport to take me to gym and other appointments when my husband can't take me. I had brain surgery before Christmas 2018 and have not driven since then. I have added another specialist to my team, a Neurologist, he has put me on epilepsy drugs which I dislike as they make me very fatigued. Unfortunately the drug regime is taking awhile to be sorted out. I am hoping to be able to drive sometime this year. On the upside I have very special friends who pick me up and take me out. Being stuck at home is very claustrophobic. Due to mobility restrictions we are selling up and moving into an apartment where I will be close to public transport and can walk to shops. On the downside I have regular appointments to monitor my brain which has not been behaving, so I am very anxious now. I have not been concerned till the last 12 months. I have had cancer lesions in my brain for 6 years which has been treated but now its affecting me. Perhaps its a figment of my imagination, as its just another aspect of having brain lesions, but I am not coping now. Perhaps I am over the constant change in my life.Will I see my girls grow up
only finished my treatment in November. Chemo and radiotherapy as preventative treatment after successful lumpectomy that had spread to 2 lymph nodes. Now on holidays in Queensland and after a freak accident at Movie World that hurt my ribs I had a CT scan to check for damage I have received the devastating news that I have 8 - 10 tumours in my lungs! I can't help but assume the worst. How long will I realistically have before I die?Brain tumour
Hello Pink family, Feb 10th I'm having brain surgery. Shit scared but will of course pitch up. They wanted it next week but one of my daughters is getting married on 31 Jan which is pretty special, then honeymoon and granddaughter needs to be with me. I feel lucky dates are fitting in. The larger it grows the better to remove so I am told. Two weeks is nothing in the great scheme of things. Please think about me on Feb 10th. I WILL BE BACK. Love Sarah54Very frustrated
Brain surgery I can deal with but the protocal of public with Sir Charles Gardner is an absolute nightmare. If I was not already being treated for major depression I most certainly would be now. I honestly think some of the front line receptionists need a career change. I admire two surgeons so far who have phoned me well into the evening but so out of the blue I have clocked off and enjoy watching Peppa Pig as I am so brain dead pardon the pun. One to-night phoned to offically go through the removal of my forehead, down past my eyes and then a square block sawed out and did I have any questions. I stopped the surgeon there as I had been on the go since 4am as it's the eve of my first offsprings wedding, I had scrubbed my grandi clean and painted her nails and blow waved her hair. I have cooked at least 6 meals from scratch as my other 4 adult all arrived with partners off planes around Australia and have lived with anxiety as absolutely no contact from said hospital for over a week from the first evening call Thursday Jan 22nd from surgeon saying I was booked in for Feb 10th..........when I phoned several times starting Wednesday of this week I came up against receptionists who had about as much interest in my story as cleaning a toilet. One suggested practically that I was making , I have always felt that living with cancer is much better stress free. I have been through hell and back this week and on occassion questioned my own sanity. This is unacceptable. For anyone else who has had a bad day/week it can only get better. On the bottom rung it's a little climb up every day and no hospital is going to beat me. cyber hugs to anyone who needs one Sarah54 and soon to be 55yrs
Not What we wanted to hear
Hi all, It's been a while since I last posted. I started 6 months of chemo on April 30. I am about to have a mastectomy Tuesday Oct 22, 2013. After cycles of FEC and Docetaxel, it appears they didn't do what we expected. Minimal change to the tumour - but it also spread to the liver. Oh dear! I started the monthly injection of Zoladex last Friday. I am told this will happen for 2 years. After the mastectomy on Tuesday, I start Tamoxifen. This is to be monitored, but my oncologist is already using words/sentences like hysterectomy and liver surgery and I'm thinking whoa...hang on, I'm still getting over chemo and prepping myself for the mastectomy . Strange as it sounds, I was actually quite blessed during chemo. It wasn;t nearly as harsh as I had anticpated. Up and down times as expected, loss of hair, eyelashes, fingernails and toenails, weight gain, body aches and pains, night sweats and at times some emotional moments. But not brutal. So I find myself feeling overwhelmed again - just like I was when I was first diagnosed. Is there anything I need to do to prepare myself for surgery and pain management for recovery. How do we recover from surgery and try to fit in treatment for secondary and then start 6 weeks of radiation therapy for the original tumour? How do we keep it normal? Kerry x
Good news again
I went to see my oncologist last Tuesday and am very happy to report that my tumour markers are down again. Hurray! Now, I have to organise another operation! This time to get my ovaries removed. Yes, I've decided to go ahead with it. Not looking forward to another hospital visit but at least it would mean no more monthly zoladex injections.A better end to 2011 than 2010
I went to see my oncologist today. Some more positive signs that the Femara may be working to stabilise everything! My tumour markers were down again (third time in a row); the CT scan showed that my organs are all clear and my bone scan showed that the cancer has spread - but only marginally. Some areas, principally those that have had radiation treatment, have improved. I skipped out of that appointment, smiling like a lunatic! I don't have to go back to see the oncologist for a whole 3 months (I had been going every 6 weeks). She has also decided to put me on Bondronat instead of Zometa. I can take the Bondronat orally (as a daily tablet) instead of having it by IV every 4 weeks. I won't miss that canula I can tell you. I will still have to go in to have my Zoladex injection. The Dr suggested I might want to consider having my ovaries out which would then mean no more Zoladex either. I'll have to think about it over the next 3 months and let her know when I see her next. So, has anyone else taken Bondronat by tablet? And, has anyone else opted to have ovaries out as part of their treatment plan?