Shadow in chest is recurrence
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Oh no! I took my time writing a post, hit submit and it went to the log-in page and all was lost. Ah well, I start again.
I was up late last night feeling quite tired but feeling the need to pursue my goal (now for sure) of a second opinion and that is thanks to all of you have given me encouragement. Ioana I watched the short video of Dr. Peter Choong. Pat, I have taken note of the steps for getting CD's of my films and will start work online this weekend and in person Monday. Diane, I cannot express my gratitude now that we have met and are corresponding. Claire, I am just meeting you and can already see strength~~I am thinking that you have had rads to the brain before when you refer to the awful mask? Ch ardonnay sharing someday somewhere and maybe some Shiraz too. I look forward to NZ and Australian wine soon.
I am not sure where the second opinion is going to come from~~I just know it will happen. I see my MO on Wed. and will be discussing it with him. I depart the next day and will be following up and likely calling Dr. Choong's offices while there and who knows, maybe I will fly over to Melbourne. Ioana are you nw in Brisbane?
Histopathology Final Report
FINAL DIAGNOSIS:
RIGHT PERIBRACHIAL PLEXUS MASS
BIOPSY: INVASIVE DUCTAL CARCINOMA OF THE BREAST
DIAGNOSIS COMMENT:
The immunohistochemical stains show that the tumour cells are positive for CK cocktail, strongly positive for ER and focally positive for PR. These results support the above diagnosis.
Lola, glad it is the weekend for you and though I suspect it is chilly there, maybe you have a fire to curl up near and take some time for yourself.
Love to you all,
Marian
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Hi to you all,
I wake up to a cold, grey Sunday. So much has been discussed just recently. I am catching up with all your news now that the weekend has landed.
Claire, I have PM you, but for now I send a huge hug as you tackle the rads. We are all supporting you and I hold onto the plan to give you a real hug soon.
Ioana, I was touched to hear you call me wise! I think I spend too long mulling things over: a positive and negative all in one!
Pat- how frustrating for you with the pharmacist error- err! Stress you don’t need. How did all this impact your work? I find that any extra issues tend to make me feel very vulnerable at work because my confidence in holding the job down dips.
Di- hello! Lovely to hear from you and it appears it is good news about your mum, but you still tackle pain. I am very pleased that you have connected with other members.
Marian- I have just been through a fruitless road to nowhere in terms of being considered for a SBRT trial to radiate a lesion that was/ is compressing my internal left jugular vein. I hope you achieve a result. Looking back, I should have prepared myself for a knock back because of the position of the tumour. My onco wants me to concentrate on my current tx. He was glad to put the rads option to one side. In the end there was no evidence of active disease so nothing visible to zap. Maybe I will get a second shot one day? I wish you well and loved the photo with the hens.
Lola- I see you are also glad to see the back of the working week. On Tuesday I attending an event called Poetry Live. When I get chance so will post a poem I really connected with. It lifted me. I love my job, but that trip involved taking 2 year groups out all day, only to return for a parents evening at 5pm! Still, I would deteriorate quickly in terms of my mental health if I had too much time on my hands.
Cive, Bright and I hope everyone who checks in on the thread- sending love.
L x
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I am on the Gold Coast about 50km south of Brisbane. 😊🌷
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Diane thank you for the attachments which I printed. Tonight I read over the operative procedure report and pathology report. Amazing really, isn't it? And you are amazing and i so much appreciate your sharing. I know what you mean about the pain/burning/throbbing being worse when walking. i was at yoga this AM and anything that has my arm above my head really gets it going. I no longer do downward dog or planks and replace them with child's pose which is still good.
Liz, what are the side effects of compression of the jugular vein?
Pat I did not get a start online for the films. I wasted too much time on my computer trying to get from "invisible" to "online" on Skype and no access. I am blaming my husband in NZ as it started when we were Skyping Friday. LØL. That Skype was a family affair so I could visit our new grand-niece who was visiting from Melbourne with her momma. Ah, Ioana, another relative in Melbourne! My daughter and I sent a baby quilt for Aroha Rose that I made for Mary 32 years ago and got little use. Since I can no longer make quilts it seemed quite wonderful to pass Mary's on. My kids all have a couple of quilts that I made for them over the years.
Bedtime now and work on getting reports tomorrow!
Marian
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Hi Marian,
Just a few more days until you are jetting off to warmer climes. Just a warning, it takes several weeks to get your films. They have 30 days according to the Freedom of Information Act. I imagine BC Cancer Agency will take a similar amount if time as it’s not as simple as printing a report. The CD comes with a viewing program on the disk to allow you to see the images. Very cool but, as I said, clearly I do not have the trained eye of a radiologist. If it was up to me to identify mets we would all be doomed!
Hugs. Pat.
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Pat, I am expecting something like that realistically but will make a start. Nothing major seems to be changing just now so we hope Ibrance and Faslodex are holding the tumour at bay and time will tell. Gotta start sometime and somewhere, right? My week is reasonably busy too with bloodwork, RMT, MO, picking up last meds including a month of Ibrance and the Faslodex. More visa points haha. BTW, where do get your fine pharmaceuticals?
Sweet dreams all who night is on for and for those in the daytime, I wish you a good day.
Love Marian
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Hi all! I read this news article today and wanted to share with you.
https://med.stanford.edu/news/all-news/2018/01/cancer-vaccine-eliminates-tumors-in-mice.html
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Thank you for sharing Diane. Very interesting and hopeful article. Perhaps the end of this beast is approaching.
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Hello all:
I am at the departure lounge in Vancouver waiting for my 4 friends who are flying with me to NZ. ANZ has a bidding system for upgrades. I got a serious seat sale in the fall so felt I could afford to bid $450 for an upgrade to Premium Economy. A few days ago i got an email saying I did not "win" but this morning I got an email saying I have the upgrade. I think this is a sign of a good trip.
I saw my MO yesterday and he was late the nurse said, due to the length of the appt. ahead of me. I think he was tired when he got me and was expecting a quick update like last month. We ran through the blood work and neutrophils and WBC were good for cycle 7 of Ibrance. We discussed pain and the usual in hand and arm/shoulder. Then I started to talk about a second opinion. Not sure why but he got defensive and I got emotional. In retrospect I feel that he was harbouring some annoyance that my treatment plan was done well before I saw him and he did mention "Gelmon and the gang." She is head of breast cancer in Vancouver BCCA. I told him I had felt like a deer in the headlights when told the "plan" on the phone August 23/17. I was on Ibrance 3 days later and saw my RO soon after. By the time I saw him Sept. 15 I was almost finished palliative radiation.
The other point of contention was about the second opinion and the brachial plexus. Nice that both my sister and BIL took notes but bottom line in his opinion is that no one should/would have surgery in that area as the results would be disastrous. He asked me why I was being so adversarial.He went off and got the letter for Faslodex and security and a copy of the CT scan in Nov. and though it is just a print off it is quite amazing to see the blob taking up so much space then looking at the left side.
In the end we were friends again and I actually do believe that he was taken by surprise. We are able to laugh about Faslodex and S/E having hot flashes and mood swings. I have to get along with him and we have developed a good relationship.
I also went over to the Royal Jubilee Hospital that Pat has mentioned and got the CD ordered of the one film done there in Nov. I will go to Vancouver BCCA when I get back and start that process too. It all may come to nothing but glad I am doing it.
Funny but my sister and BIL who know me to be stubborn and assertive did not think that I was at all adversarial. We went for a drink at the Oak Bay Beach Hotel after like Dick and I usually do post MO. Can't wait to see him!
Hugs to you all!
Marian
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Have a wonderful trip Marion. I approve wholeheartedly of the upgrade. As I started planning for Britain, the first decision I made was that premium economy was worth it for me. No way I want complete cattle class under the circumstances.
Interestingly interaction and comment from your MO. Maybe when you get back we can organize a drink at the OB Beach Hotel (more my style than the BCCA cafeteria). I can tell you about my experiences with egos and differing professional opinions. Personally, I think you MO’s concerns may be justified as there is a lot of hype in terms of advancements (think POG) and ultimately, these media moments keep the donations flowing. It’s necessary but one needs to be able to filter and understand where there might be some competing priorities. I’ve said it before on this site, I trust my MO completely. He may not be in the limelight but he is knowledgeable and, I am sure, has my best interests at heart.
I think we might need to work on the scans. Print out doesn’t cut it although, in your case it may suffice. Mine is a bit more complicated.
Safe travels!
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Marian,
Hope you have a wonderful trip NZ.
You are wie to enjoy to our holiday and pick up any threads if you still want to in return.
I am sorry it caused some friction between you and your MO, GREAT that you got it back on track by using humour.
I did tell Pat that I had VERY mixed feelings about bringing this to your attention. I JUST picked up that you had radiation to the area which makes surgery even more complex. I am really not trying to give you more work to do. I guess I am a “hear it from the horses mouth" person so that is all I was trying to say.
MO plan chemo. Radiation oncologist plan radiation. Surgeons make decisions about surgery. Anaesthetist and chronic pain specialists treat pain.
Very little point getting an electrician to fix your plumbing although he may be dabbling in it.
Wishing you All a good week/end,
Hugs to all,
😊🌷
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Hi
Glass of wine in hand. A lovely week off now for half term. 🍷🍷🍷🍷🍷
Enjoy your trip Marion. I can completely relate to your experience asking for a second opinion but hold onto Ioana’s wise words about professionals having their own specialisms and therefore talking to the relevant person. I didn’t get anywhere with Sheffield so may try Leeds next.
I head to the big smoke tomorrow. Love London so much. I am meeting a fellow bco member for the first time. Very excited! We will both have our girls with us and are visiting the aquarium, followed by lunch ( Monday
Take care everyone
Liz x 🇬🇧🇬🇧🇬🇧
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hi liz enjoy break... the trip to big smoke (its an aussie expression too... coal smog in victorian times and now pollution smog..ho humm)
Great you are doing some r n r for yourself and girl things with daughter ( Itaught at a multicultural girls school for 25 years ..seem to be a bit bored in retirement as students were always social and fun to know in the creative design and tech classes i taught.
Bright in hope
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Hi all, Enjoying London. Walked 18K steps today so feeling tired now but we have covered a lot of ground.
Saturday- shopping and lunch. Today we visited the Natural history museum and National gallery. Managed to see my favourite painting in the Pre- Raphaellite exhibition.
Cocktail back at the hotel this evening and now tucked up in bed!
L x
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Love the painting Liz. It’s beautiful.
I’ll need advice from you on where to go, what to see and where to stay. I’m still planning the May/June trip to London and ? Thought maybe Scotland but also considering some trips by train. Just picked up two more travel guides from the library.
Hope you have a lovely week.
Hugs. Pat.
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Awesome Liz! Enjoy your little vacation you deserve it.
Pat how are you doing?
Marian enjoy your vacation too!
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Hey Di. Lovely to hear from you. I’m good. Trying not to be overly optimistic but I actually feel that the Faslodex has improved my shortness of breath already after only a few weeks. Don’t know if it’s my imagination though as that is a quick response.
I may also be responding to the sunshine. It’s been cool but sunny for the last few days. Spent some time in my garden yesterday and plan to do a bit more clean up/pruning tomorrow. Spring is just around the corner. Can’t wait!
How are things with you?
Pat.
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Hi Jackboo09, you are making me homesick with your pics as I’m originally from London!! Hope that you had a wonderful time
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NZ adventure has been just that and my husband and I plus 2 of our Canadian friends had quite a night with an invasion of large crickets at dusk in one of the 2 bachs (small beach cottages) last night our first of 4 so Suzanne and Jan appeared at our door in pj's. Great fun and a wild thunder and lightning storm to follow. Dick is now down there clearing the crickets out we hope. Everyone has been wonderful including the old friends from our Saudi days who gave us the bachs for 4 nights~~paying it forward I call it. Cyclones aplenty but all lovely for us. Liz, great photos of London. I was there with my youngest many years ago and we rode on the Eye in our whirlwind 2 days. Glad you are (were) enjoying.
❤️ to you all
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Hi Everyone.
It was a glorious late winter weekend in Victoria. Cool but the sun was shining and, as usual, this pulled me into the garden. While I’m trying not to get excited, I have to say, I really feel the Faslodex is performing its magic. For the first time in what seems like ages I was able to putter away for hours digging up weeds, pruning shrubs. It was wonderful. Just two weeks ago I was gasping after trying to dig up a small patch of ornamental grass. Hard to contain my enthusiasm! Of course, my hip is giving me some grief but that I can live with.
All this seems a bit quick as I expected it to take up to three months before we saw improvement. Am I imagining things? Hope not as it’s time I caught a break.
Wishing you all a great week. Hugs. Pat.
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Pat,
It is time you caught a break and no I don’t think you are imagining this improvement as the gardening before and after clearly demonstrates. This is great news.
L
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I don't where to start - Liz - thank you for posting - you look great - I so wish I could join you for that cocktail end May....- and the painting is beyond words beautiful.
Pat - sooooh good to hear you are in the garden - 😊🍷
Marian - you make me smile - we've got thunder out here as well.
I am on call - again ... - that makes it three nights in seven days - ohhh well. I'll be a bit more vigilant when the next roster comes out.
Hugs to all,
😊🌷
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Hi,
Marian - hope you have a fabulous time on your vacation. Sorry to hear about the crickets. Hope the situation is under control.
Liz - those pictures are lovely and you look great.
Pat - glad to hear that you are feeling better and are able to do some gardening. we had lots of snow last weekend and now it looks like a skating rink. I can' wait for spring to come!!!
I started my 2nd cycle of Kisqali. I have not have any side effects other than some chest discomfort/palpitations today. it's a bit unnerving. I don' if my body has adjusted for if it is not reacting to the meds. I am definitely in menopause have the hot flashes and night sweats and now irritability. it' the Kisqali I am wondering about and for some reason more side effects means the meds are working. my neutrophils are down to 1.2 and will find out on next Tuesday where we are at.
On a good note we booked a trip to Nice the first week of May. I am so looking forward to it. It is our 5 year wedding anniversary and we haven't had any real vacation. So this is my vacay!!!!
On a bad note my sister (42) just got diagnosed with endometrial cancer. I don't know much about the biopsy or other things as she lives in Boston. I was devastatd and am a bit worried as she is alone there (she has her husband but I am protective so feel like she would deal better with it if she was here). I know very well what she is going thru and have different personalities (she may internalize it more and I took such a distant approach to my first dx, in fact I asked my bs if smoking would give me cancer when she asked me if I was a smoker). Anyway I feel sad for my sister and hope it is stage 1 as it seems to have 95% of cure which I am really hopping for!!!
Hope you all are having a good week.
Hugs
Lola
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Lola, I am so sorry to hear about your sister. There are no words at a time like this but, like you, I am praying it’s early stage. Your family is going through quite enough already.
I am glad that you have booked a trip. We all need to take a page from Claire’s book and see the sights. To heck with Mr. C!
The lovely spring-like weather has given way to more rain. Sigh... I am also looking forward to spring.
Hugs. Pat.
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Lola,
Very sorry to hear about your sister. You are really going through it. I too struggle to find the words...
Marian,
Happy hols and I raise a toast to absent crickets!
Pat, how are you with the SOB now? It sounds like you are improving and that is just great to hear.
I had a HP today and I had what I think was an anxiety attack. First cannula failed so it was a second attempt ( that was fine and not painful.)
The trouble is, by that second attempt my mind is already racing for the exit. Tight chest, yucky feeling. I have had this with panic attacks before. So what to do? I may have to bite the bullet about a port or start taking a Lorazepam on infusion day. Tonight I feel drained and a bit sickly. Tomorrow will be a better day I’m sure.
Love to all
Lx
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Lola,
I am sorry to hear your sister is struggling with cancer herself.
How is that running going for the May run? Nice sounds brilliant - I am sure you will enjoy that part of the Southern French Coast!
Liz,
You are pretty tough. I was ready to bolt by my third infusion of AC with a port in. I am not sure whether it was anxiety - I just hated being there and feeling sick.
Pat - happy to hear you are in the garden.
Claire - you are never far from my thoughts.
😊🌷
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Liz, I feel for you with the anxiety attack. My port (had one 5 years ago too) is such a relief even though so far only blood work. It will be used for my CT scan with contrast in March. It is such an easy procedure these days and I suspect that would be true where you are too?
Lola, I will be hoping with you that your sister's diagnosis is stage 1.
Ioana, have you been having the changeable weather next door too? It has been great even when pouring rain or windy. Yesterday we returned to my SIL and her partner's place and tonight I have just come to our room to settle down for the night despite a party going on. The party is for Pat's 70th, partner of SIL and a wild and fun catered affair for 70 odd people the majority lesbians who all love to party. It is actually her birthday Tuesday but guess what? It is my 69th birthday today and one of my best ever. I was made to feel special too.
Tomorrow 6 of us Canadians go off sailing for 5 days.
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Copy/paste from Faslodex thread yesterday: Well, I am pleased to say that I had my Faslodex injections this afternoon in NZ. It was to have been done by a nurse in my SIL's doctors' office but due to serious miscommunication that avenue was blocked yesterday. The call went out and an ICU nurse friend of SIL came to and did them after reading the inserts and getting my input. She did a perfect job and only after was I told that the last IM she did was 15 years ago as all meds in ICU are now IV.
Next one is scheduled for back home in Victoria.
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Hi all,
So I have called the nurse to say I want referring for a port. Of course I missed her call back as today is my busiest day at work.
Have talked to a few people and think this is the best move for me.
Hope everyone has had a good weekend. Another week ahead!
L
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Hi all,
Found some photos from another era!
Check out the fresh faced student teacher!
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