Forum Discussion
A new member and really wishing I wasn't
Received diagnosis on Feb 24th of Ductal Invasive Carcinoma Grade 2 in left breast after Mammogram with Breastscreen. Fortunately Dr de Viana was the one who gave me my results and I later found out he was one of the best here on the Gold Coast for surgery and treatment. I was in shock and we had a cruise organised with family flying from Perth & Melbourne to join us in Singapore then cruising for two weeks back to Brisbane. I discussed this with Dr and he said two weeks cruising would be good.
So back to Dr on March 17th the day after arriving home and he scheduled surgery fro Wed march 29th as I had to go off blood thinners a week before.
I managed to put the cancer to the back of my mind a lot of the time on the cruise as I was "tour guide" for a group of six first time cruisers and two we had cruised with before. I kept very busy and only had one dream that included cancer and it was very tame.
I have had depression for over fifty years and take antidepressants and now a mood stabiliser and without going into a lot of detail am taking a LOT of medications for heart disease, diabetes insipidus, thyroid and now realise I have anxiety. My anxiety takes over and physically changes my wellness into diarrohea & a continual feeling of sick in the gut. And today I am having trouble keeping busy to block the thoughts and consequent feelings.
I had at major shift in my thoughts on Friday morning in the shower and cried thinking how angry how I had ignored my left breast throughout this. I felt very sorry I had ignored it and decided on an old therapy from another time of surgery - to think positive and change things little by little - those I have control over - and feed my body only good foods, nurture myself etc.
But like another bowling ball thundering down my alley towards my "pins" id taken three weeks to stand back up - I go a phonecall from the Breastcare Nurse saying the MRI * recent ultra sound picked up another lump in the same breast - this one at 5 oçlock. Previous one at 2 oçlock and they thought it might be a satellite of the other one. Therefore need another ultrasound ASP and another biopsy on Tuesday 11am.
They also found another lump in the right breast that they thought might be benign - BUT I am worried and would like that biopsied too at the same time so I only have one anaesthetic (Had major clot on the lung & pituitary tumour in the past)
I am scared beyond belief and cannot believe how quickly things have changed - AND not for the better. I am imagining the new lump is an offshoot of the other one as it is invasive and so I am wondering if they weill suggest mastectomy - I am petrified about chemotherapy. I was prepared for the wide incision and the sentinel node biopsy - but this seems too much right now......
I haven't told my family as I don't want to worry them unnecessarily about the extra lump until I know what it actually is. But that seems to be adding to the stress.
Ive got the journey kit and read a lot and thought I had it sorted - what it was - the surgery and what I needed to do.... \But now I feel back in the shock and denial stage I was till Friday. Guess this is normal - but I hate it! It's like \I have a thread from my brain through my gut straight to my bowels as the vomiting and loose bowels is immediate......
Guess it is also normal to feel alone and afraid to reach out to anyone due to feeling like a nuisance and there's nothing anyone can say except you'll be fine" But I don't know that right now.
They say a problem shared is a problem halved and I hope this will bring some relief just from putting my thoughts and eelings on here. Hope that's what this is for.......
Ive had a lot of illnesses in my family and myself but I never wanted to EVER go to an oncology department..... Guess I should be careful what I wish for..... And sometimes what we put our energy on festers.....
Soo many thoughts running around in my head - and ive managed to come out of major illnesses efore with positive thinking, reading Louise Hay etc, doing affirmations, relaxation and meditation but I can't seem to connect to this........ It's like its not real or maybe my previous way of managing things like this is to dissociate and that's what I'm doing on an unconscious level;.....
|Sorry folks this is a ramble - but its how my head, thoughts and emotions seem right now.
Thank you for the opportunity to :uload" share - rant on here. :) <3
So back to Dr on March 17th the day after arriving home and he scheduled surgery fro Wed march 29th as I had to go off blood thinners a week before.
I managed to put the cancer to the back of my mind a lot of the time on the cruise as I was "tour guide" for a group of six first time cruisers and two we had cruised with before. I kept very busy and only had one dream that included cancer and it was very tame.
I have had depression for over fifty years and take antidepressants and now a mood stabiliser and without going into a lot of detail am taking a LOT of medications for heart disease, diabetes insipidus, thyroid and now realise I have anxiety. My anxiety takes over and physically changes my wellness into diarrohea & a continual feeling of sick in the gut. And today I am having trouble keeping busy to block the thoughts and consequent feelings.
I had at major shift in my thoughts on Friday morning in the shower and cried thinking how angry how I had ignored my left breast throughout this. I felt very sorry I had ignored it and decided on an old therapy from another time of surgery - to think positive and change things little by little - those I have control over - and feed my body only good foods, nurture myself etc.
But like another bowling ball thundering down my alley towards my "pins" id taken three weeks to stand back up - I go a phonecall from the Breastcare Nurse saying the MRI * recent ultra sound picked up another lump in the same breast - this one at 5 oçlock. Previous one at 2 oçlock and they thought it might be a satellite of the other one. Therefore need another ultrasound ASP and another biopsy on Tuesday 11am.
They also found another lump in the right breast that they thought might be benign - BUT I am worried and would like that biopsied too at the same time so I only have one anaesthetic (Had major clot on the lung & pituitary tumour in the past)
I am scared beyond belief and cannot believe how quickly things have changed - AND not for the better. I am imagining the new lump is an offshoot of the other one as it is invasive and so I am wondering if they weill suggest mastectomy - I am petrified about chemotherapy. I was prepared for the wide incision and the sentinel node biopsy - but this seems too much right now......
I haven't told my family as I don't want to worry them unnecessarily about the extra lump until I know what it actually is. But that seems to be adding to the stress.
Ive got the journey kit and read a lot and thought I had it sorted - what it was - the surgery and what I needed to do.... \But now I feel back in the shock and denial stage I was till Friday. Guess this is normal - but I hate it! It's like \I have a thread from my brain through my gut straight to my bowels as the vomiting and loose bowels is immediate......
Guess it is also normal to feel alone and afraid to reach out to anyone due to feeling like a nuisance and there's nothing anyone can say except you'll be fine" But I don't know that right now.
They say a problem shared is a problem halved and I hope this will bring some relief just from putting my thoughts and eelings on here. Hope that's what this is for.......
Ive had a lot of illnesses in my family and myself but I never wanted to EVER go to an oncology department..... Guess I should be careful what I wish for..... And sometimes what we put our energy on festers.....
Soo many thoughts running around in my head - and ive managed to come out of major illnesses efore with positive thinking, reading Louise Hay etc, doing affirmations, relaxation and meditation but I can't seem to connect to this........ It's like its not real or maybe my previous way of managing things like this is to dissociate and that's what I'm doing on an unconscious level;.....
|Sorry folks this is a ramble - but its how my head, thoughts and emotions seem right now.
Thank you for the opportunity to :uload" share - rant on here. :) <3
63 Replies
- Great news and I commented on your other post. :)
- Hi @sandramj, I can't help you with your questions as I didn't need any further treatment after my mastectomy except hormone blockers. I was 13mm grade 1, ER/PR+100% Her2-
But I did want to say how wonderful there is no further sign of cancer!! Fantastic news.
Wishing you all the best with your decisions.
Jane xx - Well finally some GOOD news for the first time AND from the oncologist - I met Dr [removed by moderator] yesterday - He had received by CT SCAN &NBONE SCAN results - 'NO FURTHER CANCER" found. Yay!
He explained the statistics for my breast cancer as follows:-
As the cancer had invaded the one lymph node they removed - carcinoma lump was size 11mm, Grade II,
100% both Oestrogen & Progesterone POSITIVE and Her2 Negative that it was the best result I could get meaning it could be treated very well with hormone therapy and has suggested Aromatase Inhibitors for ten years, together with radiation starting four weeks after surgery for 6 weeks. H said the surgery alone reduced my chances of getting cancer back in the next 10 years to 20%. Using the radiation and the hormone therapy reduces the risk further to 13%. Then if he added chemotherapy (TC - Taxotere & Cyclophosphamide every 3 weeks for e weeks it would reduce my chances a further 2-3%. However given my family history of heart disease and meds I take already for it, a large scarring on. my left lung from a previous clot on the lung, and my history with depression he felt he wouldn't suggest I do the chemotherapy as the chance of it doing more damage than good is 1-2% therefore reducing the best outcome would be 1-2% further decrease in chances taking it to 11-12%. He didn't think that small percentage reduction was worth the risk, particularly with my heart and prior health issues.
I thought that once you had surgery, radiation, hormone therapy and chemo it was like a 99% CURE of cancer. But its not at all. Even if I were younger and healthy and had all the treatments he said is available its still only a 90% chance it wont come back somewhere else. Is it just me who did not realise this? Its a glass half full and glass half empty to a degree in my thinking but the reality is NOTHING is even 98%. :(.
Id love feedback on this. Im beginning to think I had NO CLUE about breast cancer and treatment at all. I thought if I had no family history, had breastfed three kids, had regular mammograms, I was 99.9% sure of NOT getting breast cancer. But the surgeon tells me over 90% of his patients with BC had no family history, beast fed and had regular mammograms. So why does the average person think this??? Media??? SO, the mammograms should be done annually really FOR EVERYONE OVER ?? SAY 25?
Next question about ER2 negative. Anyone else here have positive both hormones and Negative Her2 - whatever that is. Ive tried to read about it and what treatments are used but I just got more confused.
I am intersted in YOUR thoughts on these numbers as I am 95% sure Im going with the radiation and hormone therapy and back into healthy living, food, exercise, meditations relaxation etc. But id like others point of view as sometimes it seems obvious but being in the BC forest now for 5 weeks I can't see the trees, just a green fog.....
Thanks in advance.
Sandra - Hey Sandra, I know its incredibly overwhelming. There was a discussion recently of alternative treatment to chemo but there honestly isnt, not at this time as much as we all hope for something new. I use alternative therapies but only post chemo in recovery and in conjunction with medicine. I honestly would wait til you see your Oncologist as all plans are different so take it 1 step at a time. We're all here to talk anytime to encourage and support. Just remember no matter what you are going to ne OK very important. X Melinda
- Tomorrow I go to see oncologist for first time after surgery removal of invasive ductal carcinoma (12mm) and finding cancer in the only lymph node they found. Had CT Scans and bone scan yesterday so get those results then too tomorrow.
Question - has anyone on here tried any alternatives to chemotherapy?
Any thoughts please I am very concerned as I'm 66 and unfortunately not a great genetic heakth background.
AND IM AS SCARED AS HELL OF THE SIDE EFFECTS
also my cancer is HER2 negative but oestrogen & progesterone positive.Tagged: - Chemo isn't a walk in the park. And it is hard voluntarily having something that will make you feel ill. The old saying the treatment is worse than the disease rings true at this early stage, but certainly it doesn't as disease progresses. The whole plan of course is that the disease doesn't progress.
But know this. You are stronger than you think. 1000s of women have done this before you and will so after you. Your experiences are unique to you and you have every right to be angry, frightened, encouraged and apathetic. These are your feelings. Acknowledging them and writing about them really does help you understand yourself even more.
Fear is very real for all of us. Even after treatment. But at some point we learn to accept that as part of the new normal and most find a way to go on and live a life with hope and joy again.
I'm glad you have the oncologist sorted and you have told your family. One step at a time. You are slowly ticking off those boxes, not an easy thing to do in the early days.
Hope your day today brings no new surprises unless joyful. Kath x - Thanks so much for the info. It is such a great support to know others have not only been through this but are on here either still fighting or recovered and clear. At this stage I'll be around on this for quite a long time and I hope sooner rather than later I will be feeling happy with positive results and I'll be able to "give back" and help others new to the C Train. Its kinda like that with many various stations along the way, but the end of the ride is to a "heavenly" version of our life and earth as we knew it. We arrive with a whole new perspective and priorities on life and very aware of living for quality than quantity. So on that note my next stop is the CT & Bone scan - Im hoping there is a nice coffee shop or little shopping centre at that station as my daughter is taking me and we'd like a little NICE time together. Thanks so much ladies I feel like we are all together fighting the same war in various "camps" and with us sharing information and supporting one another our soldiers are gaining huge advantages by doing so. Thanks TEAM. :) <3
- @sandramj It's me again . I forgot to mention my specialist performed her surgery in public and private. I went public for my mastectomy and st the same hospital Tweed had my chemo as the GoldCoast Zuni hospital wasn't completed. The staff at oncology were exceptional and they were all so positive and caring. When you do chemo for 6 months you get to know them all so well. I had a choice of traveling to Brisbane daily for 6 eeeks for radiation or John Flynn where I had to pay. I decided in John Flyn for radiation. I was probably out of pocket about $2500 over the 6 weeks as each week you paid you also claimed electronically with Medicare a portion and it is back in your account the next day. As the eeeks go by the amount gets lessor. I have a friend who had his chemo at Gold Coast and thought it was great. You do get billed for some of the drugs for chemo which is minimal. Hope this helps clear your mind.
Di xxx - @sandramj hi , hope you are feeling less emotional today after your recent diagnosis. At the beginning it is such a roller coaster because you have so many tests and so much to digest. I felt the same way with the mammogram, ultrasound, heart test, ct scan, bone scan all happening so quickly. My cancer was 100% estrogen driven and the cancer was found in the sentinel node so when I had my mastectomy they also took out 15 lymph nodes. Had 6 months chemo and 6 weeks Radistion daily . It really does feel like a whirlwind but once your emotions settle you will get that fight in you. There is so much improvement happening for the cure of breast cancer now. It doesn't feel like it right now for you and you are going through all those normal emotional feelings. Gosh I felt the same. The C word absolutely freaked me out. I am 4 years now and although I have those negative feelings and worry creeping into my thoughts usually at 3 am I try to be positive. You are doing so well stay strong.
hugs to you
Di xx - The whole business is just horrible, isn't it? I was in hospital last August for tests to establish exactly which auto immune disease (or diseases) I had, and what the full extent of involvement there was internally. Well, on the chest CT scan, the lumps in my left breast turned up. Shock, horror, fear, despair....how many other feelings? ...many. After biopsies and other tests, it was decided that I would do chemo first, to shrink the buggers first and to contain them. As was explained to me, the breast cancer within the breast (or breasts, some "irregularities) were spotted in the other one too, would not kill me. Cells breaking off and going walkabout and setting up shop elsewhere might. So, 12 weeks of AC therapy, followed by 12 weeks of Paclitaxel and Herceptin, followed by bilateral mastectomies with full node clearance. I cannot have radiation due to my scleroderma, so they're going hard with the surgery as a result. I had a terrible run with the first phase of the chemo, but I told thought to myself that if all these good cells were taking such a hiding, well then the bad cells were getting beaten up too. With the current situation with Isis, I thought of it as follows. The cancer cells are like Isis fighters hiding in civilian areas. I plane comes over and drops bombs (the chemo). Isis fighters are killed, unfortunately, there is also collateral damage to the civllians (the hair follicles, lining of the mouth and gut, the fingernails, the blood cells etc). However, between each bombing raid (chemo session), there is three weeks to recover. So long as the baddies got wiped out, I couldn't care less what the collateral damage was...I did bounce back each time, ready for the next round.I've never been a quitter and I don't intend to start now, but that doesn't mean that there haven't been times when I've thought that this was all going to bee too hard, and what was the point anyway, it would probably get me in the end anyway? But the I give myself a mental enema, pick myself up, dust myself off, fill up my humour tank, and push on.
