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Recently diagnosed and freaking out.

93 REPLIES 93
Avibaby
Member

Re: Recently diagnosed and freaking out.

So sorry you are stuck in the waiting room for two weeks - we need a "holograph" booth so you can relax on the beach.
Avibaby
Member

Re: Recently diagnosed and freaking out.

I can't wait ....Sooooooo much fun!

Avibaby
Member

Re: Recently diagnosed and freaking out.

Ha....Ha....Ha....Ha....Ha...!

Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

They definately should and also they should come round and hoover and wash up no extra cost !!!
Quaggie
Member

Re: Recently diagnosed and freaking out.

Can handsome waiters also be trained to give feet rubs/shoulder massages/squishy hugs as needed?
Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

That's good to hear !
Avibaby
Member

Re: Recently diagnosed and freaking out.

Our Asian buffet will be open 24/7 and will be eternally staffed with handsome waiters.

Avibaby
Member

Re: Recently diagnosed and freaking out.

Hi Christina,

 

Nice to have you back!

 

Glad to hear your surgery was so successful.

 

Yes, sashimi has a nice sounding name - would love to try it! 

 

Avibaby

Avibaby
Member

Re: Recently diagnosed and freaking out.

 
Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

I am in the waiting room for at least another 2 weeks- waiting on MRI and nuclear bone scan results - so if the buffet and handsome waiters could continue for a while I would be grateful - oh and the gin.
Mai7
Community Champion

Re: Recently diagnosed and freaking out.

Well done Cristina,  take it easy and keep your mind busy with things you enjoy whilst you are waiting.  Sending gentle hugs. xxxx

Paulus
Member

Re: Recently diagnosed and freaking out.

Welcome back Cristina JG.  Yes the 'virtual waiting room' is going to have to be very big by the sound of things  -  hope we have it up and running soon, haha.  All good wishes to you and speedy recovery x

Cristina JG
Member

Re: Recently diagnosed and freaking out.

Hi Avibaby and everybody else!

I am resurfacing now. I had my WLE last Thursday, Aug. 16th, on less than 48 hour notice, which was great as I didn't have time to get anxious. It was a long day with lots of waiting and only back home at 10:45pm. Everything went smoothly and the wound is quite painless. I was actually more sore from the MRi guided biopsy the previous Saturday. They removed two lymph nodes. Now it's the waiting game for results of margins, nodes, and further treatment. I don't have an appointment yet for that. 

Yesterday (three days after operation) I was feeling quite good already but then developed a rash on my arm (the side of the operation) and torso, so we had to go to A&E in case it was an infection. They did blood tests and concluded it was some allergic reaction of some sort, peharps to the contrast dye, but nothing alarming.

Not sure if I am misunderstanding something but  i think this "waiting room"  is an imaginary game... So, I would like lots of sashimi and Asian food! The post-op nurse was from Malaysia and we started chatting when I woke up and she was telling me how she liked to cook Asian food... and I've had a craving since then...

Happy week!

Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

Ooh sounds good although the last time I went to one of those I felt rather bloated fior a few days ,think it was the third portion of toffee banana fritters ....😳
Avibaby
Member

Re: The waiting room

Hi Ladies,

 

I would like to have Chinese buffet in the waiting room, all you can eat.

 

Avibaby

Avibaby
Member

Re: Recently diagnosed and freaking out.

Sounds delicious!

 

Paulus
Member

Re: Recently diagnosed and freaking out.

As for the waiting room - I would like a proper Starbucks counter  -  not one of those small ones with limited choices - I want the whole caboodle please, and I must be able to have my almond hot chocolate extra hot. Thank you - that will do nicely.  ( Oh complimentary and unlimited as well  -  we don't want to have to pay! )

Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

Poldark ??
Quaggie
Member

Re: Recently diagnosed and freaking out.

Hi 

 

Paulus - they already told me grade (High grade DCIS, grade 2 IDC) as they had that info after my initial mammotome biopsy. I don’t know if they’ve oncotype testing on the tissue removed during surgery or any other testing to guide them on rads/chemo need. I’m not sure if they might hold off on that decision till after the second op as if they decide I need a mastectomy that might change treatment plans. Like I said, it’s all uncertain when the uncertainty might end!

 

for the waiting room I’d like Cadbury’s chocolate mini rolls served on silver platters by bare chested hunks! 

 

 

Paulus
Member

Re: Recently diagnosed and freaking out.

Quaggie I would hope they can give you some indication of what is going on before your next surgery. Too long to wait more than a month to get feedback when they have already done one surgery - surely a 2 week window is ample time for results re: grade etc. I hope so. x
Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

Gin and chocolate ??
Avibaby
Member

Re: Recently diagnosed and freaking out.

Quaggie,

 

I will wait with you in the "Waiting Room". The waiting room has high-quality laminate flooring.

 

What else do you think should be in the waiting room?

 

Avibaby

Quaggie
Member

Re: Recently diagnosed and freaking out.

Hi Avibaby

Yes, I'm having my second surgery on 31 Aug. Exactly one month after my 1st surgery. I'm stuck in limbo at the moment - 2 weeks after my first op and feeling pretty good (though 8 hours out in central London exhausted me yesterday) but 2 weeks to go before the next surgery.

And still no news on when they might tell me what the next stage is - I don't know if they'll tell me this week or if I'll have to wait until 2 weeks after my next surgery (i.e. mid Sept). It's the waiting anxiety that is really getting to me. If they'd just say 'you'll know on this date' then I'd be fine but uncertainty is horrible.
Avibaby
Member

Re: Recently diagnosed and freaking out.

Hi Quaggie,

 

Yes there is less "freaking out" for me. My seroma is better.

 

Did you get a 2nd surgery date?

 

Avibaby

Quaggie
Member

Re: Recently diagnosed and freaking out.

Of course, but no reply needed if you'd rather not share xx
Paulus
Member

Re: Recently diagnosed and freaking out.

I will PM you Quaggie, if that's okay x
Quaggie
Member

Re: Recently diagnosed and freaking out.

Glad to hear your seroma is settling down Avibaby.  I checked with my surgeon about the hard lump at the top of my boob but he didn't think it was a haemtoma, just the internal scarring where the lump was removed.  I'm going to keep an eye on it, but as they'll be going back in to the same place then that might all change anyway. 

 

Paulus, I'm sorry to hear that your margins meant that there was nothing more that could be taken - hope I'm not being insensitive to ask if that meant that you needed the full masectomy?  My surgeon seems to be suggesting that he'd rather do a masectomy than a third lumpectomy (if this second op doesn't get the clear margins) because it would leave me with a deformed breast but surely that's my choice?  He's very blunt and not very easy to talk to so I always feel a bit bullied in our meetings.  Not the ideal relationship.  

 

Unfortunately, I also got it wrong that the clear lymph nodes meant no chemo in my case.  Apparently that's still to be decided.  I haven't met with an oncologist at all yet and haven't had the full pathology results so I think I have to wait until next week for those.  Trying not to drive myself loopy in the meantime. 

Anyway, wishing everyone well - hope there's less 'freaking out' now than when this thread started.

 

K xx 

Avibaby
Member

Re: Recently diagnosed and freaking out.

Hi Quaggie,

 

Congratulations on the lymph node news! You have slayed the biggest beast of all.

 

Yes the bad news on the re-incision is disheartening. Just when you thought you could go back to your life, an unexpected sinkhole opens up and tries to swallow you. But it won't. It will be easier this time because you are a pro at surgery. Plus you already know that your lymph nodes are clear. I know that there was some scary talk about a mastectomy but isn't it more likely that the 2nd operation will be successful?

 

What is going on with your "hematoma"?

 

I am doing OK. My seroma seems to be lessening, and that is what I have been waiting for.

 

Avibaby

 

 

 

 

Avibaby
Member

Re: Recently diagnosed and freaking out.

Hi Christina,

 

How are things going? Your biopsies must be finished, yes?

 

Avibaby

Paulus
Member

Re: Recently diagnosed and freaking out.

Good news that the lymphs are clear Quaggie, that in itself is a good good thing.

 

I'm sorry you have to go back again  -  but good that they can do that  -  my margins were 0.5mm and 'present at anterior margin' - but there was no more tissue to be taken as it was the upper outer quadrant where it was 'present' , and I had cancer present in 1 lymph node out of the 11 removed -  so my problem will come back to haunt me, but it's positive, forward-thinking news for you, and that's good.  

 

Onwards and upwards, all the very best wishes to you x

Quaggie
Member

Re: Recently diagnosed and freaking out.

Hope everyone's doing ok.  I'm feeling a bit deflated this morning.  At my wound check appt my consultant gave me some results and I've been told that I need further surgery as the margins weren't clear and there was evidence of DCIS in the tissue at the edge.  So they need to take more out on the bottom edge.  And if they don't get it all this time, then it'll be a masectomy.  

 

I was so convinced the surgery stage was behind me that I felt more in control, but now I feel I'm back where I was after the initial diagnosis.  Even though the tumour itself is gone.  

 

The positives are that my lymph nodes were clear which is great news.  I know I have to cling to that and hope that the surgery removes what is necessary this time round.  

 

Hope everyone else is feeling well this morning and Avibaby, hope your seroma is settling down. xx 

Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

Some surgeons don't bother draining them as they often just fill right back up and usually it just gets absorbed back into your body naturally .I was gearing myself up to have it drained for the third time when it just disappeared .Its very uncomfortable - a great relief when they drain and it bit depressing when it fills right back up !!
Avibaby
Member

Re: Recently diagnosed and freaking out.

I like the part "and then it dissappears on its own overnight"! Overnight cannot come too soon for me. Will have it drained again this Thursday and then we hope overnight comes right afterward.

 

Thanks for your steady and calm response.....

 

Avibaby

Avibaby
Member

Re: Recently diagnosed and freaking out.

I like the part "and then it dissappears on its own overnight"! Overnight cannot come too soon for me. Will have it drained again this Thursday and then we hope overnight comes right afterward.

 

Thanks for your steady and calm response.

 

Avibaby

Avibaby
Member

Re: Recently diagnosed and freaking out.

Hi Quaggie,

 

Yes I am feeling more reassured about my seroma today. The towel trick consistently works so the fluid buildup is not bothering my head so much. Plus I realized that the surgeon and you are most likely right. I will be seeing the surgeon again on Thursday.

 

OK so you are having your issues too. so sorry about that but you are very lucky to have your appointment in two days! Whatever it is they will know what to do with it.

 

Is the weather cooler in London now? Have you been able to get out of the house?

 

 

 

 

Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

Avibaby my seroma filled back up twice on the third occasion it just disappeared on its own almost overnight .It is very uncomfortable as it's putting pressure on your scars .
Jill1998
Community Champion

Re: Recently diagnosed and freaking out.

Hi Quaggie , I think the smelly pit is quite common - think removal of the lyphnodes may disrupt drainage in some way mine did settle down eventually - you ask in the Ask the Nurses section - I've never actually seen a medical explanation for it .
Quaggie
Member

Re: Recently diagnosed and freaking out.

Hi Avibaby

 

Sorry to hear about your issues.  It does sound like it might be a seroma though as they can refill after they've been aspirated and can appear in different areas on the body.  Have you seen the BCC notes on seromas in the 'Your Operation and Recovery' booklet?  Think it's online here too. 

 

It's probably better if it's a seroma than lymphoedema as at least the seroma will go away eventually.  Hope the towel trick worked and that you get some more advice/reassurance on it soon.  When are you seeing someone again?  

 

Now I've got my dressings off I'm a bit worried I have a haematoma as the top of my boob feels quite hard.  I'm not sure if this is normal or not.  I have a wound check appt on Mon so I'll put off worrying until then. 

 

The other thing I've noticed is that no matter how frequently I wash, my armpit on the surgery side stinks of BO.  I just can't shift it no matter what! It's horrible as I'm so careful about cleanliness and normally smell of nice perfumes rather than BO.  Will try and remember to mention it at my appt too but my surgeon is very dismissive of a lot of things so I'm not sure he'll take any notice.  It's the small things that make this so horrible.

 

Hope everyone's doing ok today?  Sending strength. xx 

Avibaby
Member

Re: Recently diagnosed and freaking out.

Hello everyone,

 

I thought my recovery from lumpectomy/SNB was going well and then I developed a complication - there was 90cc of fluid stuck in my lymph node underarm area (had it aspirated out yesterday). The surgeon said it was a seroma, but I don't agree. I think I am one few unluckys to have lymphedema; because the placement of the fluid is above and below the lymph nodes, down another 5 inches to my trunk area, and about 3 inches into my back area. Also, right after aspiration, everything swelled up again to the same size again. So it can be painful and of course I am not happy about this.

 

But I am trying to adjust. Last night I took a giant towel, rolled it up into a very long tube, wrapped it around my chest, and tied it into a knot. This put pressure on the swelled up areas and when I woke up, the fluid was mostly redistributed to other areas of my breast.

 

Will be seeing the surgeon again next week. I am going to insist that I get a second opinion on the "seroma"

 

Avibaby

Avibaby
Member

Re: Recently diagnosed and freaking out.

Christina,

 

I feel for you. Every way you turn there seems to be one obstacle right after another and it seems that no progress is being made. But I think that there is a little bit of progress if you look at the underside of this. They found out that two lumps are benign - that's SO fab! They found a new issue and they are checking it out NOW. Thank god they are doing this; if there is a problem they will deal with it NOW instead of later. You really wouldn't want to revisit this whole experience again, would you? 

 

I am glad that you are so busy - it keeps your brain in the here and now. No time for BC thoughts in the daytime, but I am now wondering if you are sleeping at night? If not, you can go to a regular physician and get some medication that will reduce your justifiable anxiety so that you can sleep.

 

Avibaby

Avibaby
Member

Re: Recently diagnosed and freaking out.

Hi Quaggie,

 

Glad to hear your recovery is going well. 

 

So sorry that you are alone today. But you are not alone because I am writing to you! 

 

I like your plan to visit the U.S. but sorry that your friend wimped out on you. But you can still come to visit me in Boston!

 

Have you seen Norwegian Airiines airfares? You can fly to the Boston roundtrip for less than 500 American dollars - not sure how that works out in British pounds. You would have to pay for your own lodging since there is no room here in our small apartment for you. But I think you could stay for three or four days in a decent hotel for $130 per night. So a small trip to Boston could be done for $1500. 

 

I will likely be getting 3-month chemotherapy so you could do this in January or February and I should be fine by then. Hopefully you have money for this?

Cristina JG
Member

Re: Recently diagnosed and freaking out.

Hello all,

Sorry I have been a bit quiet over here in the last few days. I don't have much spare time after my work, appointments (or chasing them) and children, in whichever order.

Avibaby - It's so great you are feeling upbeat and full of beans already. Thank you for cheering everybody else here and thank you so much for thinking of me and my surgery date. Unfortunately I am still waiting. They changed the treatment plan date to Aug. 8th to Aug. 1st. Good news was that the two further biopsies came back clear, they were fibroadenomas ( I still have the initial malignant lump). BUT, they now see an area behind my nipple that looks reactive on the MRI image so they need to do further investigations in order to determine which type of surgery I am having. I need to have an MRI-guided biopsy at a different hospital. After an anxious wait, I got a letter for an appointment for Aug 11th. But then, I got a call from my breast surgeon today to tell me that the MRI-guided biopsy team said that they could not work with the original MRI image as it was not clear enough. So, I need to have another normal MRI first, which has been booked for this Thursday. I am so exhausted with the wait and change of plans. I understand this is all in my best interest but I really need some progress now.

I need to go to bed soon as I have to get up very early tomorrow for work. Apologies if I have missed a direct comment from somebody. I am just writing quickly to update you on my news.

All the best,
Cristina

Quaggie
Member

Re: Recently diagnosed and freaking out.

Hi Avibaby

 

So glad to hear you're feeling so positive now you're heading into your second week post-op.  Shame about the lost holiday but yes, putting plans in place for a new trip is always good for the soul.  After I was diagnosed a friend and I started making plans for a US road trip in May next year.  It was great for my morale.  But that friend hasn't made contact since, even though she knew I was in surgery last week.  No message to wish me good luck before, no message to see how I've been since.  It's really disappointing.  All the other friends who knew have been regularly touching base but not this one who I considered a good friend.  I'm waiting to see if she does get in touch to give her the benefit of the doubt but it makes me sad.

 

Other than that, I'm doing fairly ok - not much pain apart from a few zings/zaps in my breast and a tight feeling under my arm.  I'm doing my exercises and my wound check yesterday went well. 

 

It's my first day alone today - my brother and a friend who were staying with me have both gone home.  Had a little cry after they left as I felt vulnerable.  I've lived alone for 15 years so hate myself for suddenly feeling like I need someone in the house.  I need to get back to normal asap.

 

It's too hot for me to venture outside today so I'm focussing on TV box sets and knitting.  But will go for a bit of a walk tomorrow if it's cooler.

 

Wishing everyone strength xx

Avibaby
Member

Re: Recently diagnosed and freaking out.

Wanted to let you all know that I'm doing pretty well - just started my 2nd week at home and things are healing up. I still have times when I land in the "cancer brain funk", but getting out of the house and doing my usual stuff  pulls me out of it. Especially if I do outdoor excercise - so at dinnertime we all went out for a walk on the beach which did wonders for all of us.

 

Our September family vacation is lost, but the silver lining on that is that it is so much fun making plans for a bigger and better one in March 2019!

 

My next upcoming appointment will be stressful - I will find out if I need radiation alone or radiation with chemotherapy. But I have come up with a set of plans for both outcomes, so I feel much better than last week.

 

Quaggie - I know you are on your 3rd day of recovery - Is your brother still there?

 

Christina - today is August 6th and in 48 hours you will be on plan for surgery and hopefully a treatment plan. So I'll bet you're feeling pretty good!

 

avibaby

 

 

 

 

Avibaby
Member

Re: Recently diagnosed and freaking out.

Hi Quaggie,

 

Congratulations on being on the other side of surgery! Perhaps we WILL run 5K. 

 

Today is the first day I am actually going on an official outing - to the movies and ice cream with my hubby. 

 

As you can see I am back to my usual cheery mood. I was able to partially "delete" the worrying by doing something to make myself feel good immediately. I ate noodles. I watched "Law and Order" reruns. Also tried to plan a mini-holiday since I am out of work for another week, but well enough to get out of town for a few days. Will let you know what we are able to do.

 

Have a wonderful recovery day -

 

Avibaby

 

 

 

 

 

Quaggie
Member

Re: Recently diagnosed and freaking out.

Hi all. So here I am on the other side of surgery.

It all went ok - the insertion of the guide wire didn’t go quite to plan as they couldn’t see the marker on the ultrasound so had to be guided by mammogram instead. I had a bit of an emotional meltdown at that point as the anxiety was a bit much and squishing my boob for 20 mins felt like adding insult to injury but the radiologist team were absolutely lovely, so kind and gentle and looked after me so well that I felt much better.

Was back home after surgery by about 8pm and so relieved that step is now done. I feel very tender today and have developed a bit of a protective T Rex arm position which I have to remind myself not to do, but I’m doing my exercises and trying to use the arm as much as possible.

I had the OSNA check on my lymph nodes during surgery which came back clear but my surgeon said nothing can be 100% guaranteed until the pathology results are back. So it’s a waiting game now. But I’m trying to focus on recuperation for now and like Avibaby’s idea of ‘deleting’ worry.

Am finding my blue dye smurf boob amusing and the blue pee. It looks like you’re weeing out pure disinfectant 😂😂

Hope your recovery is still going well Avibaby. Who knows maybe a 5K walk/run is a target we should all aspire to?

K x
Mai7
Community Champion

Re: Recently diagnosed and freaking out.

Thanks Avibaby, I'm sure you could also do a 5k race for life after treatment.  You can go at your own pace and it's a great atmosphere with all that pink going on!  I completely understand your denial because staying positive can be very fragile at times.  You can be just bad one thought away from a full on meltdown at any moment so keep the denial if it helps for now.  I certainly did plenty of that throughout treatment!  If you can stay in the moment with your thoughts and don't think too far ahead it can be very helpful. Xxx

Avibaby
Member

Re: Recently diagnosed and freaking out.

Mai7 you are amazing....running a race like that! Congratulations on rebuilding your body after the devastating cancer experience. 

 

I will also rebuild my body but i don't know about a 5K race. Not something I could do even before the big C.

 

I will be recieving my lymph node news in about two weeks and I am going through a new case of "angst". I have  a combat plan for "rads only", but not for the undesirable chemotherapy option.

 

The only way for me to emotionally survive the next two weeks is to think the most positive option and hit the delete key when chemotherapy thoughts start to invade.

 

Sounds like denial doesn't it? But I need to survive the next two weeks without too much suffering.

 

avibaby

Avibaby
Member

Re: Recently diagnosed and freaking out.

Congratulations on getting your surgery date! 

 

I see that you have a long wait, but we will be here waiting with you.

 

I think that keeping as busy as possible is a good way to get through the wait.

 

Keep people within talking distance as much as possible. They make you feel better even if you don't want to talk about your situation.

 

I actually tried to exercise alot when I had a case of nerves.

 

We are here for you so keep talking.

 

avibaby

Mai7
Community Champion

Re: Recently diagnosed and freaking out.

Hi Avibaby, just replying to your question about the race for life (I've been away on holiday) yes, I actually ran the whole 5k, no walking. I can't tell you how pleased I am that my body is able to do this!  Glad to hear your surgery went well.  Onwards and upwards. Xx

Quaggie, best wishes for your surgery and please don't try to do too much too soon. Give yourself time to heal before any heavy lifting. My blog has some surgery tips which you may find useful: http://lifeafterlola.blogspot.com

Delly, thanks for your response and I'm glad you enjoyed reading my blog.  I am awaiting recon after mx and anc which should be January at the earliest as that will be a year since radiotherapy finished. Have you had your recon? How did it go?
Xxxx