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Two weeks in - and so confused!

13 REPLIES 13
SondraF
Member

Re: Two weeks in - and so confused!

Hi there - I will check out what you just posted, thank you.

 

Surgeon confirmed they won't take out the primary tumor because whats the point, its spread now, although I believe there are different hypotheses on tumor load over time etc. Frankly I want the damn thing out because it has grown since summer and is brushing against my arm and I just can't look at it anymore. It makes me feel really unattractive and a constant reminder that something is wholly wrong with me. If it shrinks from the hormone therapy they may then consider surgery to remove what is left, which I guess is why they put the tumor markers in (partly).

lovemama
Member

Re: Two weeks in - and so confused!

Hi SandraF,

By the way, you may want to look into additional treatments (ie. surgery, radiation) on top of hormone treatment via NHS ?I am via private? . To me. AI only is not as harsh as chemo but no idea if AI  + those CDK inhibitors ps. I am not medical and have no experience to those inhibitors.  XX MelMel

lovemama
Member

Re: Two weeks in - and so confused!

Hi SondraF, I think the medical team is able to tell which is cancer or arthritis from the scans. Recently I just have the 3-monthly CT scan and yearly bone scan. The bone scan result came first. My onc told me there is some slight abnormal activity on the spine in my neck. It s not cancer but may be fibro????. When the CT scan result came, she told me it is arthritis. 

Re the treatment, I think you may be interested in a document which I have posted to section TREATMENT AND MEDICAL ISSUE under thread 'New approach in breast treatment in  Canada'.

ps. Currently I m receiving treatment in Canada. The treatment approach seems quite similar to what UK is doing

SondraF
Member

Re: Two weeks in - and so confused!

Hi everyone - been away and things have changed - more biopsies, tests, hospitals, etc. I think we are about at the end of this, which is good because the affected breast is definitely larger.

 

I've now been switched to hormone therapy first (and only? maybe), however we haven't started yet as the medical oncologist wanted an xray of my left pelvis and a full MRI spine scan. I have been twice to start the goserelin (since i havent had menopause) and twice they cant administer because the scan wasn't done/hadn't been read yet. Supposedly next Tuesday now. I've been released from the horrors of Homerton at least, although not before they did another biopsy on a intramammary gland (benign) and two sets of mammograms because the radiologist shot the tumor marker straight through the tumor and had to redo it.

 

Barts is much nicer but same situation of lack of time/information. I just have this nagging sense that something is being missed and the passing of time isn't helping. I don't feel reassured at all or confident because no one has explained why they think what they think. The breast specialist said they were switching to hormone therapy because the mets were more extensive than first believed when the bone scan came back - well ok, same area or different? Are you guys aware that I have arthritis and degeneration back there? Is the oncologist joined up on that one? I feel more dictated to rather than a part of my own health care (although accept that hormone therapy is a good first line treatment anyway). But if there were only one or two actual mets that makes a difference in possibilities and potential longevity options.

 

I think if this was a textbook, easy example of any stage then fine - this whole decision tree approach would work. But this complicating factor with the back I am concerned is going to be an ongoing issue as its been treated in such a blase fashion. I've had almost two months go by now since the verbal diagnosis and while I appreciate it takes time and to ensure the right care (and to not be killed with chemo if they don't have to) I still feel really alone and lost in the system - Ive been through four different hospitals now for all the different scans and appointments.

 

For the most part I'm just anxious and want to start hitting back at this - maybe if Id had the injection last Tuesday I wouldn't feel so cranky. I don't want to be one of those people whose story ends up in the Daily Mail because of one error or delay after another.

EB78
Member

Re: Two weeks in - and so confused!

I have had a similiar situation to you. 41 nothing until a month ago and newly diagnosed with secondary breast cancer. I get what you mean - I always feel rushed at my appointments. Letters dont turn up so I have to chase.  Appointments run late but mine is over in next to no time and you leave feeling no more informed than when you got there. I'm hoping things get better but cant see it. If I had private insurance I'd definitely look into it.  Good luck 

lovemama
Member

Re: Two weeks in - and so confused!

Hi SandraF,

I am thinking would it be too early to talk to the private.I was diagnosed with bone met in my sternum. I want to share my experience that led to the diagnosis. Last year in May, my GP sent me to do a chest x-ray due to minor shoulder pain and a dot sized image was found. My GP said "no worry, This happened to a lot of people" and he also checked with me if I had any injury on the chest. I said yes, I felt on the side curb and it hit me so hard. Luckily, he sent me to the bone scan. This time, abnormal activities were found on my sternum. My GP then sent me for CT scan and  one of the comments in the pathological report was something like that " A leison found on sternum with 1cm disruptive on  both vertics coin?? (forgot the technical word) with bone metastatic". My GP then referred me to the breast clinic which I had the bone scan and CT scan redone. In the 1st meeting with my onc, she confirmed it is bone met  based on the pathological report though I kept asking could it be injury. She then sent me for a bone biopsy to verify if this time the cancer type same as my primary BC and also my tumor marker (26) was within the normal range. In between the 3 weeks waiting time, I google a lot if any chance of false positive for bone/ct scan but unfortunately, the biopsy double confirmed my onc s right , it is a bone met. 

I have the thinking of "too early" is bcoz I am afraid the private may waste time to redo all the scans. Besides, chemo anyway should be before surgery. This can systematically treat both the breast and the  bone (in case) at the same time rather than waiting for recovery after surgery and then to start chemo.

The final decision is in your hands whether Private and/or  NHS and/or even second opinion. Wishing you all the best and finger crossed, it is finally NOT bone met (at least node involvement is inconclusive). 

  

 

lovemama
Member

Re: Two weeks in - and so confused!

Am I dreaming? my long post just disappeared

Shi
Community Champion
Community Champion

Re: Two weeks in - and so confused!

Sondra, I’d go to your pals office at your trust and get all that noted. I am sure if your team knew how much additional stress this was causing you they would be horrified, they are there to support and treat you, not treat you like an idiot. Hope you get this sorted ❤️Shi xx

SondraF
Member

Re: Two weeks in - and so confused!

Thanks all - its helpful to hear from others!

 

All I have been told is that it is IDC, 5cm, right breast, left side is clean. The first biopsy on suspected node was inconclusive - they did a new one last week. I met with who I think is the breast surgeon and top of the pyramid last Friday and I have utterly no clue what the hell she was telling me. The CT scan picked up a suspected bone met on my right pelvis. I told her I have degenerating discs in my L5/S1 and L4/L5, some arthritis in both side facet joints, and currently have sacroilliac joint problem - on the right side- caused by a specific incident in June that has been improving with time and responding well to conservative treatment. The bone scan results hadn't come in for that meeting so I still don't know what level of advanced cancer I have or really any more information than I had two weeks ago. They want to do an ultrasound on the area (fine) and I have MRI film from 2016 on that area - hell I even had it in my bag because I was discussing it with my chiropractor not three hours before. No one even ASKED if I had any history of injury in that area before essentially levelling the Stage 4 diagnosis on me. The surgeon was going on about how its treatable but not curable and how sorry she was and Im sitting there thinking look lady, you don't even have all the evidence and admitted the CT scan can sometimes throw up a false positive.

 

In addition, I was introduced to another two breast care nurses, didn't see my original one, but supposedly I can call any of them at any time. I did try calling on Monday about the flu jab - can I just get it at the pharmacy instead of my GP surgery and a question about minor oral surgery - and the switchboard couldn't connect me appropriately and after leaving a message I still haven't received a call back. Did I even reach her answerphone? Who knows!

 

What I know is that the plan remains the same of chemo, surgery, rads. Fine. Chemo will be done at Barts. Fine, got no problem with that as its only a 20 minute journey rather than the hour trek up there to the hospital. Surgeon/consultant woman wants to do a dual track where they sort out the initial chemo appts with the last tests. Sure, great. But I haven't heard squat since then about next appointments or what is going on and was told last week to call if I haven't heard anything by this Friday.

 

Seriously, they all just seem like they have their hair on fire up there and I am getting very concerned that something will be missed or something prescribed that doesn't need to be or get lost in the shuffle. I dont want my surgery there and Im starting to really question if I want my surgery done by her even if it was done privately somewhere else. In fact, I never want to see the inside of Homerton Hospital again if I can help it.

 

I wouldn't care about the team approach so much if people would wear a name tag, introduce themselves properly and explain their role in my care, take longer than ten minutes to talk to me and don't treat me like Im an idiot who cannot understand medical terminology. If the MRI is showing several lymph nodes involved THEN TELL ME. I need to know why you think I am at the stage you think I am at and I need it delivered in a way that is more compassionate than you just about crying on my behalf.

 

Tomorrow Im going to call insurance about sorting out the private aspect on surgery but sticking with NHS for chemo. But if anyone knows the answer about the flu shot being ok from the high street pharmacy rather than the GP office let me know 🙂

Mai7
Community Champion

Re: Two weeks in - and so confused!

Hi SondraF, sorry you find yourself here.  It’s a very confusing time to begin with and you are being looked after by a team when you feel that you need someone to guide you through and keep you posted on what’s happening.  A breast cancer nurse should have been allocated to you personally.  Whatever you decide, make sure you research thoroughly as you’re already in the NHS system and could risk further delays if you have to start again with the private system.  If you need help with your progress in the NHS system you can contact the PALS dept in the hospital or the McMillan information centre.  Your treatment plan will have been tailored to your particular cancer type and stage.  I hope things go a bit smoother for you soon.

silversueback
Member

Re: Two weeks in - and so confused!

Hi, sorry you feel so alone.....what treatment are you going to have? I had DCIS 14 years ago, and opted for mastectomy. I did go private, as I had insurance, and in those days the NHS didn't respond as quickly as they do now, and I didn't want to hang around. Having recently been referred back again, (different type of BC this time, just to be difficult..) the system is much slicker, but I can see that this feel rushed if it is all a new experience.

How are you feeling about it all now?

Sue

Shi
Community Champion
Community Champion

Re: Two weeks in - and so confused!

Sorry chemo starters threads not threats 🙄text gremlins are out 💕💕Shi xx

Shi
Community Champion
Community Champion

Re: Two weeks in - and so confused!

Hi Sondra, sorry you find yourself on here, but glad you’ve jumped on to ask questions. Sorry you feel like you are on conveyor belt and you are not having things explained clearly by your team. Please use the ask the nurse facility on here, they can help answer things for you. The nhs is very good, but I think teams can vary from region to region, you should have had a bc nurse given to you at time of diagnosis and they should be able to answer questions and support you. I know people who have got medical insurance and did use it to go private. You need to do what’s right for you, this is your journey and in all of it, you put you first and do what you want. You are in control, it’s just to start with you feel like you have been chucked out of the plane with no parachute. Once the treatment plan is in place you will have better idea of how you want to proceed with everything. There are chemo starters threats, surgery thread, rads threads and so much more on here and lots of 👭❤️👭where everyone shares tips and 👭and 😳 and 😁 hope this helps 💕💕Shi xx

SondraF
Member

Two weeks in - and so confused!

I got the initial diagnosis on 13 September of IDC, 5cm in my right breast.  I had a breast reduction 20 years ago and have never been really able to feel anything since then - I only noticed something was up when the nipple retracted. My GP, who I have to say I am not overly fond, chucked me into the system so fast my head spun - two days from GP to Clinic and then another week to the follow up where it was confirmed. No history/health risks other than some seriously dense breast tissue - I'm (barely) 42, no mammogram would have picked this up, and even feeling around what was left of my breasts I never felt anything. I brushed it off for a few months thinking it was maybe fat necrosis (had quite a few heavy falls on that breast) or that the plastic surgeons in '99 indicated I would probably need a touch up lift by now.

 

Since then its been non-stop hospital appointments - CT, bloodwork, MRI, bone scan, another mammo on the left (unaffected) breast - leading up to the big reveal this Friday of final treatment plan. Which is fine, all for thoroughness, but I have zero idea who any of my 'team' are, no one ever seems to introduce themselves with a name or their role, they were three hours late for that consultation to tell me I had it (I was so angry at that point I almost walked out) that lasted maybe ten minutes because I was so tired I just wanted to get out of there, I met the breast care nurse who has been great about getting those appointments set up but I haven't had to call yet with questions. I'm assigned to Homerton University Hospital and frankly I am a little disturbed by the conveyor belt feeling. No one ever seems to have time to talk, I dont know who anyone is, the hospital itself is like a massive, slightly run down bus station, and it gives me doubts about my treatment being specific and done for me, not just to hit some targets. There is all this rushing around and I worry about errors being made.

 

Something else to add - I'm an American expat, so I didn't grow up with this system, have no friends or family here to explain it, and while I greatly appreciate what the diagnostics must have cost to date, I also have private insurance and am considering using it, probably in an NHS facility with private component like the Royal Marsden. I get that consultants work between the two, which is fine, but will it get me a better pace of care where I won't feel so rushed? Where I can maybe get to know my surgeons before I trust them with my life? Where I can maybe have some greater privacy?

 

If I do decide to go private it sounds like the scans don't have to be redone but there could be a slight delay while a new team is assigned and treatment path determined. I'm ok with that, I just want to also feel comfortable with my treatment and team, and I just am not feeling that right now. I guess my question is - should I be questioning my current path to date or is this standard? Have others chose private and for what reasons?