Shadow in chest is recurrence
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Not much difference if you ask me! 😉
So... back into scan land for me. I had a CT schedule for late March but several weeks ago I started experiencing pain in my right groin/hip. My MO indicated he was going to order a bone scan but I had not heard anything so reached out to him. To be honest, the groin and hip are getting more ‘insistent’, bothering me quite a bit at night and today? Oy vey! Unfortunately the order for the bone scan had not gone through and so now he has this underway and has asked that the CT be moved up.
I continue to struggle with this aspect. I certainly appreciate the responsiveness but feel like such a hypochondriac. It’s a far cry from my days of never going to the doctor. In fact, when this first manifested itself my GP remarked that he hadn’t seen me for ages. I’m certainly a frequent flyer now!
Hope all are well and looking forward to the onset of spring. Cold here but crocuses and daffodils are blooming!
Hugs. Pat
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Hi Liz, you look amazing in your photo. I've had a port since my 2nd diagnosis. I was told I can keep it in for 10 years. I plan on leaving mine in for awhile. Downside is I have to get it flushed every 3 months. Port is alot easier no excessive pokes.
Pat so sorry about hip and groin pain. My mom had the same exact symptoms as you she had to get a hip replacement. She is a lot better now.
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Liz,😊
I still have my port in. I have good veins and since I was in for only eight sessions, and I don't mind needles I thought I might get away without one but my onc " You will Drive the nurses crazy - get the port, it's easier on everyone". I humoured him without being sure. The first infusion the silly thing would not draw back freely despite flushing ok so we decided to go peripheral and image - I hated the feeling of adriamycin and cyclophasmide peripherally - burning despite hot packs and a large vein. Imaging was fine, worked a treat on second chemo and I was Happy I got it.
You may not have an option but chest placed ones kink less and have a lesser rate of clotting ( less length of tubing) - yes it shows in low tops but like everything it's a matter of priorities. It can be done as day procedure under deep sedation or light general anaesthesia. It's a 3-4cm incision with a small pocket - so get lightpain relief for a few days.
I did not use the port for chemo blood tests but I don't need that many overall - I just prefer not to access it more than needed as there is always a risk of infection. Now I get them to flush it and do my bloods at the same time - 3 monthly ( yep I get a fair bit of surveillance) - they don't love me since they need to label the tubes and send them to path, not their "routine" - but they got used to me. And I take a dark chocolate bar with me me for the lucky girl or boy who has to cope with me.
I am hoping to take it out when I have my other (R) mastectomy - but for now I am enjoying travel in the time off work. So maybe mid way next year if all stays the same.
Hugs to all,
😊🌷🐣
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Hi Liz,
That's such a cute picture!!
I can't my experience with having a port as I had a PICC line for my chemo. it was a bit of a pain as I needed to keep it dry. I only had to have 6 rounds of chemo though, so per may be better for you.
Pat sorry to hear about your hip/groin pain. Has the pain continued with the same intensity? Can you take something for the pain?
As I may have mentioned I was ramping up to have my recon with a prophylactic right mastectomy before the diagnosis was confirmed. As I am in the Kisqali/letrozole trial I asked the MO if I can still do the recon she has to ask the drug company if there are any restrictions. it may be up to the MO to decide if the trial doesn't have any restrictions. the MO mentioned that if I go ahead the recovery may be longer due to the immune system is impacted by the drugs. This week's bloodwork showed my baby white cells bounced back up from 1.2 to 2.0 and the mature ones were up to 4.0. So I think my body is adjusting.
So I found myself in a dilemma of should I ask for the surgery or not? It's a long recovery but I want to have a bit of old self back and be able to wear tops and not worry about my fake boob showing. I have to talk to my plastic surgeon and see what he would recommend. Anyway I am not looking to have the surgery until later in the year and definitely after my trip. I will also ask my BS who I see on March 7.
Hope you all are doing well and ready for the weekend!!
Hugs
Lola
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Lola - think twice about that foob. And maybe reduce the other one so they match
. I had one get hard as a baseball after rads, but for it's replacement I did flap surgery which I DO NOT RECOMMEND. PM me for any tips. Recovery is rather long. Sending hugs.(()) C
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Hi Claire,
Thank you for the response. I was thinking to do Diep as I don't want to use my back muscle and implants. Is that what you had?
How are you feeling?
Lola
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Hello everyone! Yesterday we dropped off our 4 guests after 5 nights aboard. Luckily we were able to come into a ferry berth at Waiheke Island that was unused. We had a quiet day sailing north and both had naps once at Kawau Island where we anchored for the night. We are now continuing northwards with favourable winds. I finish week 2 of Ibrance tonight and am a week out from Faslodex and am tired though no doubt two weeks of travel with lots of activity and people has contributed but I feel that it has been really positive to have been able to do this trip. Our friends especially one of them (who has been there for me totally since diagnosis in August) have been great. It has also been nice to be free from appts. too.
Pat, I saw your comments also on the Faslodex thread and glad to hear you now have dates booked. Let's make a point of getting together for happy hour at the Oak Bay Beach Hotel once I am back. I am waiting for my next appt. for a CT scan of my chest. It will be my first with my Bard Power Port and I have read that the imaging can be better with the contrast going through the port. Lola, I am wondering if PICC lines are more common in Ontario. Yesterday I was on the Canadians with Metastatic Cancer private Facebook group and it sounds as though it is very difficult to get a power port in part because of the difficulty in different places for nurses' availability for access. Pat, we are very lucky at our cancer agency combined with Royal Jubilee. For blood draws I have to be mindful of a longer wait once there and at BCCA they actually can do it but they are overbooked I was told when I was having my last blood work and they were happy I was going across the parking lot to the Jubilee.
DiV, I did not know about the 3 months until just before I left but I appreciate that knowledge. Hope your pain is less?
Lola, I find the whole reconstruction topic so individual. I am careful to tell myself that I did the right thing when I was choosing. I had reconstruction with tissue expanders then implants. I did not have enough belly tissue/fat for DIEP but wow it can be so good. My friend from BCO chemotherapy 2012 and now my neighbour has DIEP for both sides and it has turned out well though nothing is perfect and she has had to have tweeps and so on. Cording and capsular contractures (combined) most likely caused by radiation led me to a re-do a year ago December and though I really thought I should just have ut all out, my PS convinced me to have another go. It was all removed anyway in June, 2017 not long before my diagnosis or recurrence! But back to the beginning, I am glad I did it and do not regret it. If it has been bilateral mastectomies I would have stayed flat but somehow wanted some symmetry. I have worn my new prosthetic with my camisoles 3 times on this trip. Claire, did you have DIEP or latissimus dorsi or another kind of flap?
Liz, I did not read back a page so not sure what your latest is~~will go back after I submit.
My son and his Australian partner and her mom arrive in 6 days and can't wait to see them. We will be at a family reunion with lots of Dick's family on one of the family's farm for the weekend so I will have several days to rest up until then back at Dick's sister's.
My 69th birthday at my my SIL and partners' place.
Being honoured by the Queen on my birthday~~my SIL Claire is on the left and her partner Pat on the right. Coincidentally the party was fro Pat's 70th but took place on my actual birthday. They know how to party and all 8 of our Canadian contingent was invited.
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Marian - belated Hapy Birthday - yes it does look everyone had a fine time.
You look glorious !!😊🍷✨🎂
Lola, I echo Claire's reservations - you have time to think and research. ( as agressive as I am in batting for radical surgery for treatment of primary cancer/or potentially curative limited secondary, I am super cautious in supporting elective plastic surgery when undergoing treatment for a recurrence, particularly in the early days of that treatment, when there is much to be sussed out about the biology of the recurrence and how it will behave/misbehave -but that is just me and everyone is different 😊 )
Pat 🌷🐣🍷
Liz always 😊
Hugs to all
Ioan
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Hi all,
I am enjoying staying in bed this Saturday morning. Here in the UK it is bitterly cold with weather folk coining the phrase ‘the beast from the east’ as a Siberian cold front brings minus temperatures and there will be snow next week.
Sorry, we Brits like to prattle on about the weather!
Marian, I seriously want to be at any parties you are throwing. Your photo shows you to be happy and enjoying life and we celebrate with you on here, if not able to do so in person.
Ioana, the info on the port is hugely helpful. I will be very frightened so perhaps heavy sedation will be the right thing to do. How many days off work do you think I might need?
Lola- as you can see from my ‘ frightened’ comments about a port, I am not one to rush into surgery, apart from when I was first diagnosed and then I had my lumpectomy in 13 days from finding out I had breast cancer. So it is of course your call, however take your time to consider all aspects of what this will mean for your life right now. This is not an easy decision for you.
Pat- sending love and will catch up via PM. I hope I’m not the only one on our thread who needs to read back over the posts when it comes to the weekend.
Claire, when you are able, let me know what your London plans are. I have a treatment on the Thursday after you arrive on the Wed. I think my treatment is Thur 31 May. Great timing, but I can work round it.
And finally, I have a CT scan on Fri guys.... oh well if this one is good I may have six monthly scans then...
love to all L x ❄️🇬🇧❄️
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Oh and I had a mini party last night with the husband and our boys, playing our favourite songs and chatting. Pizza and beer and laughs.
Just st what you need on a Fri night.
Jack ( son, 16) was telling us that he has researched every university for medicine degrees and had a plan A,B and C. He needs A grades in physics, chemistry and biology to get a place. Cambridge is a long shot even with this grades because competition is so high. He has got some work experience at our local hospital coming up and is determined to get a place to study to become a doctor. He makes me smile and I love him dearly.
Lucy, 15 hmm.. i m not sure where to start with her. She is getting good grades but she doesn’t enjoy school and is easy to snap. They are so different.
My step son, Cameron: I don’t see a lot of so that meant that last night was all the sweeter.
We are planning to get away for Easter as a family.
L
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hey Liz,
I had a general anaesthetic - the plan was light sedation but it happened I chose a vascular list I did routinely for it and I was surprised how shattered everyone in the room was - the other anaesthetist drifted me off with a " we don't need YOU awake on top of everything else" . I have never asked her exactly what that meant.
The main two complications of insertion are bleeding and the chance of a pneumothorax - as they are done under imaging these risks are very very small.
A port is a funny thing - they can kink, clot and worst of all, may get infected. Ohhh...😱 I am full of good news. You will get antibiotic prophylaxis during insertion.
But seriously it's a plastic tube that ends in a major vein just above the heart and is connected to a reservoir that sits neatly in a pocket on your chest. Because the scar is small people forget there is a 3 by 4 cm ( roughly) pocket done to allow the reservoir to sit. Some surgeons will secure the reservoir with a stitch in the pocket so there is no mov in the first weeks others don't. I don't see enough of them in oncology to tell you that the extra stitch is a good thing. But you could ask about kinking and if there is anything they do to prevent it. Although done as a day procedure I would allow for a few days to heal - if you can get it done on a Thursday you can take Friday off and have the week-end before you need to figure out if you are ok to go back.
I thought getting a port is a good thing Liz, for you and for me. Like everything being prepared minimises any problems. Getting put in is not more sore then a biopsy even if it is light sedation. It should take between 30-60 minutes max. Take it slowly movement wise on the pocket for the first few days and all should be fine.
😊🌷🐣
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More very helpful, reassuring information Ioana. Thank you.
I am on apixaban ( anticoagulation drugs) I do worry about bleeding therefore?
When I saw the consultant he was so blasé about this procedure. I had this image of him doing my port whilst eating his lunch! But it’s me and my unique situation.
I am hoping to get a GP appointment next week to discuss anxiety meds.
L x
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In the realm of vascular surgery a port is basic.
So his outlook fits. It's why I didn't fuss about which list mine got done in - didn't count on the people I work with caring so much - I went in going ...work is work, just get it done. Ha!!
They will either stop your apixaban for the days ( at leastt48 hours prior) around the procedure or stop and cover you with something short acting.
But that should run on that surgeon's protocol.
Biggest thing in my opinion do Not play superwoman after - let that pocket heal and the reservoir stay put. No weights for a week at least etc.
As a side observation on anything surgical - just because we can now get people in and out with the speed of lighting does not mean they are healed. Healing takes time and care. It just means they do not need to be in hospital.
😊🌷🐣
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I am on a roll this week/end.
This was being passed between a few surgeons I know. 😊🍷
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Finally Marian,
Love the tree of life pendant - I hope I am right on what it is - Brilliant!!!!
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Ioana, it is indeed a tree of life and one of my best friends who has been travelling with us and another friend gave it to me for my birthday~~perfect gift. They actually managed to buy it when I was window shopping with them but did not notice when my friend disappeared for a few minutes.
Liz, you can clearly see my Bard Power Port. The last one settled in faster and Ioana is correct about taking it easy afterwards. I have found that it is best to take it easy yes but remember also that it can take several days before you wake up one day and don't feel any pain at all. Again, I love my port.
Marian
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Marian
Thank you for the further info on the Bard port. I am quite happy to book myself a few days off to have and recover. Last week I had 3 full days, teaching 8 periods per day so I am not going to short change myself when the time comes.
With current NHS waiting times I may have a lengthy waiting time as the referral has only just gone in.
Your necklace, lovely. Going to source one for myself I think or even better, drop a hint for Mother’s Day!!! 😆🐒
Finally, here is my favourite painting again, very close to your name: ‘Mariana’ inspired by Tennyson’s poem of the same name.
Ioana-my how I laughed at that cartoon! Sometimes we need to have faith. My wobble over the port chap was because of my over active imagination. For some reason this consultant morphed into a Frenchman eating a baguette in one hand and fitting my port in n the other. You see this is why my students think I’m crazy!
Much love to all,
L x
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Hi All,
What a week! Very busy at work and, in addition, I have been trying to plan my trip in May. It's interesting what sets a person off but I have to admit I have found this to be very challenging emotionally. My travel agent, an old friend who is a bit too enthusiastic, initially found a train excursion through Scotland. I love trains and loved the idea but... when I looked at the itinerary I started to worry that it was very rushed with lots of packing and unpacking along the way, not to mention dragging a suitcase on and off the train (no porterage). Plan B was to look at cruises. She found one that had an exceedingly high price tag, inadvertently getting my emotions in an uproar. I think she was trying to encourage me but her comment of "if not now when" really made my situation hit home. Ultimately I decided to pass on that one. While I am not adverse to spending quite a bit on a trip, I couldn't justify it for a 10 day cruise in a part of the world where travel is pretty easy to arrange.
So, now looking at some other cruise options and have found one that might fit the bill. Was almost ready to book but... now I have a bone scan on Monday, a CT scan to be moved up and... I started to look into travel insurance. There's another issue. Just about everything can fall under a pre-existing condition and I doubt if I would be considered stable. Even if the Faslodex starts working my oncologist is still considering adding Ibrance back into the mix if the response is what he terms "sluggish". Also, the hip is becoming more of an issue which may require radiation. My idea was to get this out of the way so that I could travel free and clear. Uh... maybe not...
It's all so frustrating. I feel like I am afraid to travel given the circumstances but am terrified not to given that I have no idea how things will progress. Do I just take the risk and eat the cost of the travel if I need to cancel? Marion, would be curious what you have done about insurance as someone from Canada.
Interesting discussion about ports. I have not needed to look into one yet but it's good to be prepared.
Hugs to all. Hope the week ahead goes well.
Pat
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Hello 😊 One and all,
Pat - hmmm planing a holiday was supposed to be relaxing. I would just decide what I wanted to see in Scotland and found a reasonable way to get there. I loved Scotland and I drove through most of it. For two to three weeks you can almost get away with carry on luggage - I know I pack light - but seriously at that time of the year - short coat, two jumpers one light one cardigan type, 2-3 blouses, 2-3 shirts, 3 pants, 3 pairs of shoes - 2 for walking, one low heel dressy, swim suit and a tshirt and gym pants, scarves or necklaces, warm hat. I loved Edinburgh and Oban and if anything I could easily spend a week in each ( seeing some of the Isls from Oban). Did she try and talk you into the Hebridean Cruises - they are heaven aren't they but ...ouch so expensive - I keep dreaming, maybe one day....
I am reading the silliest book - Get remarkably organised - Lorraine Murphy - in fact not REALLY reading - just scanning as it my first ebook - did not think I would wanted it in a paper copy. It takes this jolly idea of the life wheel - you know where you slot family, friend, work, me time, food, exercise, creativity etc around a circle and proportion it - then it asks you to draw an outer arrow to each area like a bicycle wheel spike and mark along it how organised you feel in that area. Wait there is more - you list all of those area and decide whether YOU choose to have high, medium or low personal standards in that zone. You accept that you can not have high standards in all areas and you line up your choices based on your current life priorities.
When you have completed this 10 minute exercise you will clearly see what you hold high and need to be more organised in - eg exercise and what you do not do well and it's ok because you choose to put it on tha back burner, as it is a nuisance but not a life priority - personal admin.
Yep - I am a child at heart...today - rare free week day - I will leave my desk, and a whole lot of paperwork awaiting to be sorted - and go out to the beach, antique shop, fish and chips lunch. I have a perfect excuse - quite remarkable.
Hugs to all,
😊🌷
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Ioana and Pat~~I too like the Scottish idea. I love trains but would agree it needs to be relaxing with some kind of ticketing that allows that. I organized a reunion with 5 old friends from the UK two years ago and we met in Amsterdam for 4 nights, then took the train to Delft for another 4 nights, finally one more night in Haarlem and last one near the airport. I had only a borrowed medium sized backpack and considering it was March and cool and sometimes wet, it went well with just the type of layers Ioana talks about. Not sure I could do it now but would try as off and on trains and buses was so much easier.
Pat, I very lucky for health insurance as the company my husband worked for in Saudi gave us an excellent plan. It costs us $4500/year plus deductibles and 80% paid up to a certain point but they are paying my Ibrance etc. so it only takes a month to start getting paid every year. It also includes overseas medical costs. We now know that we made the right decision in taking the plan at the time. All said, I think I would still take chances. What do the ret of you think?
Marian
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Thanks all.
Ioana, your idea of carry on and mine might be slightly different. LOL. I would be hard pressed to get that much into what I consider carry on! I might well go back to plan A which was a few days in London and a few days in Edinburgh. Much easier in terms of flexibility. The cruise sounds lovely but it requires payment ahead and a commitment that is a bit challenging at the moment. But let’s see how things play out. Really, maybe the fall would work better for a cruise. The Galapogos is calling...
Marion, I suspect you will find that even your policy will exclude anything cancer related. I have a pretty good extended health policy with work and can buy extra travel insurance but anything pre-existing will be excluded unless you can show that you are stable. It’s amusing as ‘stable’ is defined as no new treatments within six months, no worsening of condition and, you’ll like this one, no diagnostic imaging within the six months before travel. Given that my MO wants scans every three months while I am on treatment that seems a bit daunting. And unfortunately I haven’t been able to achieve three months of stable!
Had my bone scan today. It was a killer as I have a spot on my spine that feels like someone is trying to insert a screwdriver. I managed to be scheduled for the machine that lacks multiple cameras so it was a long process. One pass over the top, one under me and one on each side. Added up to about 45 minutes on that god awful table. Ouch! But hopefully it will tell me what is up with my hip and spine. I worry a bit as bone scans have not been very helpful as a diagnostic tool so far.
Lola, I don’t have any advice to offer as I had a lumpectomy many years ago. As Ioana and others pointed out, you do need to think about healing which will likely be slow and the potential for infection/complications. I wish I could be more help.
Hugs to all.
Pat.
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well at least I did not offer you a travel plan on polyvore - gosh how you will laugh at this - it's this funny app that allows you to match your tops and bottoms and...
(we have 10kg for carry on)
Bugger about the scan time. Keep us posted
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Good news,I think. Bone scan stable with the caveat that it under reports the extent of my bone mets compared with CT. I never know quite what to make of this. My MO has explained it to me but it’s always as clear as mud. And, of course, it does not explain why I have had the persistent hip, groin and back pain over the last six weeks. Unless I am losing my mind which some days seems entirely possible!
CT tomorrow night. Sigh....
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Pat -in between two ...well.
Just had to say brilliant on the Bone Scan !!
Bone Scan will pick up increased bone turnover as activity - hot spots - if the lesion is quiet - has a low mitotic rate for example - not high bone turn over - it may not show it. Generally sclerotic lesions do not turn over as fast as osteoblastic. Ct Scan with contrast will pick up any bone abnormality (although don't always get a good look at ribs - they are cut through in images) - you can tell a little about the activity in those lesions from the morphology - but again if lesions are quiet or healing - it's hard to separate. Rescanning gives a story.
😊🌷🐣
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That explains it then. Thank you. This sounds like it is a function of my slow creeping cancer. I suspect the nature of the beast is also why it has been so challenging to find a treatment that beats it back (although I would have thought the Anastrozole would have done the trick). Interesting puzzle to solve.
Hugs. Pat
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Update. At the risk of you all thinking I'm completely nuts, I am happy to let you know that I did NOT have my CT scan today. I gave it quite a bit of thought last night and ultimately decided against it (never actually wanted it in the first place). My reasoning was the following:
- The bone scan did not show anything ominous so it's unlikely that I will have a fracture anytime soon.
- The original plan was for a CT late next month which would give us an idea if the Faslodex is working. As an tonight would be coming on the heels of a scan in early January trying to chase down a cause for increased SOB
- Even if tonight's scan showed progression it would only prove the Xeloda was not working (which I suspect given the clinical symptoms). It would not alter our treatment plan for Faslodex as we know that needs time to work.
- So, a CT tonight was not going to do anything to help me along my current path and was more likely to muddy the waters in terms of timing for the next scan.
I wrote to my MO this morning asking him if we should wait until the end of March for the CT as per our original plan. He agreed. Can't tell you how relieved I am! While I appreciate his responsiveness, I would rather not have every conversation end in a scan. I am getting somewhat tired of the ultra reactive approach which makes me feel like I am a neurotic hypochondriac.
So, I am back to planning a trip and Mr. C has been given the night off. Cheers! 🥂
Pat
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Pat,
A sensible decision. Well done for being your own advocate and you can get back to planning your trip.
I am on day 2 at home as schools are closed due to snow, very low temps and high winds.
Scan tomorrow in York ( CT) scan but I think I will be unable to get there? So do I skip breakfast only to find it had been cancelled?
L x
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Good for you Pat. It is good t make a decision that you know you are happy with.
Liz, why do you need to skip breakfast for a CT?
Ioana, our insurance is company self insured and thus no fine print on pre-existing so far as I know. Guess I will find out if ever I need to test the waters.
Tomorrow noonish we pick up Steven and his partner and her mom and head to the family farm for the weekend. Dick has already gone with his second cousin-in-law and my cousin in law Nona is driving to the airport and Steven will take over driving after. I am not confident for city driving on the left. Only 3 more Ibrance nights and still feeling pretty good. Yesterday though I went round Auckland with Nona on her rental agent jobs and spent much of the time vomiting and then came back and blocked the main bathroom toilet. I had said to Nona that sometimes I suddenly feel sweaty then nauseated then vomit. Never really sure what brings it on but I am cleared out now for the weekend ahead and plan to take anti nausea med for the drive to the farm.
Marian
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Hi Marian,
I think you are supposed to fast in case you react to the contrast dye which I never have.
I have to trudge through snowy York without the benefit of a bowl of porridge!!!!!!!! 🤨
Is this usual with a CT scan with contrast?
L
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Liz, not sure but I have not had to fast.
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