Just diagnosed and freaking out.

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Rockchick
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Re: Just diagnosed and freaking out.

Postby Rockchick » Wed Feb 14, 2018 6:50 pm

I've been down the path of trying to ask my doctor for genetic testing, I will certainly try the family cancer clinic. I don't think I will qualify because it's my grandmother and great aunt on my Dad's side, and my aunt on my mothers, and they want a first degree relative. Which is weird because as I studied genetic syndromes some were dominant but expressed differently in individuals so that say a male in the family would have a 60% chance of getting cancer over his lifetime, and a female between 60 - 90% or something. My aunt on Dad's side is undiagnosed (in care from age 50 onwards, considered a crazed hypochondriac) and Dad has had various illnesses including Meniere's disease, a goiter, and a bout of frank paranoia. My dad has always hinted I will one day go crazy, but if cancer turned up that was the better option. The fact none of the family has been diagnosed makes me a bit hopeless.

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Re: Just diagnosed and freaking out.

Postby jezza » Wed Feb 14, 2018 2:20 pm

I did have a complete body bone scan the day before my mastectomy. I was nervous wreck but luckily I had a nice technologist who was able to check and tell me it was all clear. They aren't really supposed to do this...it's up to your specialist to give you the results but she could see how stressed I was and knew I was going to go straight to hospital. I don't know how they decide who has these tests or when.

Did you ask about a breast care nurse? Someone to phone when you have questions is invaluable. Also, your anaesthetist should see you before your op, so explain your concerns to them re low blood pressure etc. All your info will be taken into consideration. They are very careful about any health issues you may have.

Do you have a family history of breast and /or ovarian cancer? If so you can go to a family cancer clinic and have a chat. They do genetic testing through the public system. There is no charge for a consultation or for genetic testing at a family cancer clinic. They will determine whether you qualify for the testing.

jezza xx
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Just diagnosed and freaking out.

Postby Rockchick » Wed Feb 14, 2018 11:45 am

I realised after reading more on cancer staging last night that they have to do this op to stage the cancer, so I'm a bit more relaxed about it. Will have to apologise to the doctor for freaking out about the possibility it's late stage when she told me. T = tumour, N = nodes (this op) and D would be the distant spread, which is probably what the doc meant by always doing it the same. Sorry to all here for sounding like a raving luny, too, and thanks for your impressively sane reply Jayem.

I also realised that they will have to do tests on the takings so it's unlikely I will wake up with more missing than anticipated.

Still I can't help but think a way to avoid unnecessary late stage operations might be to mix up the TND process with an initial bone scan on everyone so that cancer patients that have already advanced to bone mets might get diagnosed before having to go through an operation. If a person actually has sore spots on their bones, for example, and a history of undiagnosed long illness.

They gave me a book about Early Cancer. I still don't think I have 'early' anything, but I'm resigned to the fact now they won't check anything else until they thoroughly investigate this. Kind of looking forward to finding out what's up with me anyway even if it's the hard way.

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Re: Just diagnosed and freaking out.

Postby Rockchick » Wed Feb 14, 2018 12:13 am

She is also giving me the node biopsy. Couldn't a scan of some kind also show if there is cancer there, like an MRI or CT scan or something? If I felt fine I wouldn't think twice but I've been so sick I honestly think I could easily be the 1 in 100 that dies just under a general. I faint from low blood pressure giving blood, I can barely walk up even a gentle slope without aching legs and I'm not a fat person. I even had one of those blood tests for cancer already, and it was clear (shows how good they are). They don't know if this is the only tumour or even the biggest tumour. I'm thinking about going overseas to get some cheap tests done like a bone scan and testing for the genes that cause BC to help see how likely it is to recur before I decide to cut. My doc seemed to think removing a primary tumour was always a good idea even in advanced cancer, but I've read conflicting data.

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Re: Just diagnosed and freaking out.

Postby jayem » Tue Feb 13, 2018 8:52 pm

I think, when a diagnosis of cancer is made, it is hard to stop yourself imagining the absolute worst. It is hard, also, to distinguish what can be attributed to the cancer and what is possible to be what is called co-morbidity, in other words, other conditions that occur because of something else.

Your surgeon will remove the lump and it will be sent for pathology. From that, a determination as to future treatment will be made.

You make no mention of a sentinal node biopsy. The sentinal node is the first node in the string of nodes in your arm pit and is the first place that traces of cancer will be found if there has been any spread. If your surgeon has not mentioned this, it is likely they do not believe it has spread anywhere. This is a good thing.

Don't be surprised when you have your lumpectomy that you end up with a very bruised breast. I couldn't believe how black mine was! This soon disappears but it is definitely disconcerting.

Try and slow down your thinking now. You need to be in a good frame of mind going in to your surgery. You only have to wait until Tuesday and this will go very quickly.

Best wishes
Jan

Dx 20 Sept 2006, 2 cm IDC + DCIS, 1/16+ node, ER+, PR+, HER2-, 4 AC, 4 Taxol, 33 rads
CFEM Trial 5 years Arimidex, 5 year SOLE trial Femara
Dx Aug 2016 neuroendocrine cancer in pancreas, mets to liver, abdominal nodes, hip, skull, scalp and breast.

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Re: Just diagnosed and freaking out.

Postby Rockchick » Tue Feb 13, 2018 8:13 pm

Just an update: I saw the breast surgeon today. I told her about my POF, hip pain, ongoing chronic inflammatory myopathy, back pain and rashes, and belief that my other breast was also showing the same signs the one with the lump had while it was, erm, lumpifying. No joy. She just said they treat everyone the same, there was no proven benefit to scanning my body for distant cancers before a lumpectomy and the size of the only one showing in the scans was a mere T1. Mucinous carcinoma is a type of cancer that is often multifocal, but nobody seems to give a rats about an MRI for the other boob or anything. She's scheduled me in for a lumpectomy on Tuesday. I don't really know the utility of surgery on this one little lump. I know it's mucinous carcinoma. I know it's either multifocal or metastatic. They won't find out if it's multifocal by cutting this one out. I just wanted to find out how far it has spread BEFORE deciding if I need to subject myself to an operation that leaves me scarred, but apparently that's too much to hope for. Why not at least MRI my back first to see if they need to mess with my breasts at all???? If they find it's advanced after the biopsy and THEN give me the scan I told them I needed prior I'm not ever going back to a doctor again. I shouldn't have ever gone to the doctor to start with, with this.

On the upside, it IS a lumpectomy rather than a mastectomy. :sniff:

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Re: Just diagnosed and freaking out.

Postby jezza » Sat Feb 10, 2018 2:19 pm

For some reason Drs specialising in breast cancer seem always to be called breast surgeons or in some cases you can be referred to a general surgeon. I'm sure they don't operate on everyone they see. When I was referred to a surgeon (general) I had a fine-needle aspiration first off and then a biopsy.

Another thing, which you probably have already considered, is to take someone with you and write down your questions. It's good to have someone to chat with afterwards as I didn't hear half of what was being said. Any terms that you find hard to grasp, write them down too. It's very hard to take it all in.

I hope that you get a clearer picture of what's going on at your appointment but you may have more tests to come. You will be in good hands though with a Dr who specialises in that area.

Hang in there.

jezza xx
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Just diagnosed and freaking out.

Postby Rockchick » Fri Feb 09, 2018 12:24 am

Jezza, I can't find my bit of paper atm I stashed it away, but I think from memory it was 12mm by 8mm. I hope I don't have to have a mastectomy, but my doctor seemed to think it was the next step and mentioned talking to "my surgeon" rather than "a specialist". He also looked at my hair and said "you just grew your dreadlocks, too!" so from that I think he assumed chemo was also on the cards. I also hope my rash is not related, I only sort of wonder if it is because all the diagnosis I have for it so far is "chronic inflammatory myopathy". I asked a doctor about four years ago about dimpling on my flanks under my arms but she said it was just the way I put on body fat, however it happened very suddenly and dramatically and yeah I wouldn't be entirely surprised if it's in my lymph nodes. I asked another doctor about it a year or so ago and he agreed that my underarms were extremely puffy, but didn't remark on it otherwise. Could just be my joints.

My breast tissue was very dense on the ultrasound and the report mentioned it was a difficult reading. I had to direct them to the specific lump I was worried about and it took ages to find. I'm just certain that the lumps I feel in my left breast are the same as how I felt the cancer lump they did manage to image, but a few months behind it meaning at the moment they feel sort of like hormonal regular lumps that come and go only they seem to be hanging around, also my nipple is starting to anchor to the skin like on the right.

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Re: Just diagnosed and freaking out.

Postby schoolteacher » Thu Feb 08, 2018 9:02 pm

I was surprised how painless the mastectomy was. If you have lymph nodes removed from your underarms, you will feel that more. They usually check sentinel nodes.
You will find that it is hard to make plans as each step and each test can change the plans. A lot will depend on results and pathology. It is a big learning curve. The best advice I received was take it a day at a time
DX OCT 08, 9mm Her2+ grade 3 tumour and DCIS. Nodes clear, wide local incision, unclear margins so LB mastectomy, chemo Taxotere Carboplatin Herceptin Tram Flap Nov 2011

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Re: Just diagnosed and freaking out.

Postby jezza » Thu Feb 08, 2018 5:55 pm

The recovery from a mastectomy is usually pretty good. You have a drain (or two with a double) for a week or so. The main thing I found hard was lifting arms over my head and also they don't advise driving for a couple of weeks (from memory). Most people are surprised that it isn't a more painful op.

Don't know about the singing. Think that's a good question to ask your surgeon. Don't get ahead of yourself though...you aren't even sure that you're having a mastectomy yet. The rash does puzzle me. It sounds nasty but I haven't really heard that as a sympton of cancer but I have no medical training. I was surprised that your GP said they hardly ever do lumpectomies any more. A lot on this forum would disagree with that! Do you know the size of the tumour?

Waiting is the pits as you can't help your imagination. My husband told my kids, daughter cried, son asked if it was contagious...lol...they were only 7 and 8 and I also had an 18 month old. We didn't tell them until the night before the op and we knew what was ahead.

Anyway 26 years later I'm still here!

jezza xx
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Just diagnosed and freaking out.

Postby ruth1 » Thu Feb 08, 2018 5:27 pm

Hi Rockchick, where you are at the moment is really hard - the not knowing whats happening and having to make really big decisions. I had a bilat mastectomy and left hospital after 2 days but that was because the only bed available was in the colorectal unit which surgeon wanted me out of because of infection risk so I went home but had a wonderful friend with nursing experience who moved in to care for me for 5 weeks. Couldnt have done it without her. I was put straight onto chemo after that and it made me very breathless but it doesn't affect everyone that way. Chemo reactions are very different individualistically. Some people barely notice theyre having it to the other end where it makes you quite sick. If you have mastectomy you wont be singing because there are stitches that cant be stretched and you cant move your arms above your head or drive for a few weeks - again that depends on your healing. Try to keep the dark thoughts at bay or you will drive yourself crazy. The only thing you can do whilst waiting is keep busy - I cleaned out cupboards etc. It is so hard though. Singing might be on hold for a month to 6 weeks.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Just diagnosed and freaking out.

Postby Rockchick » Thu Feb 08, 2018 4:42 pm

HI Jezza and Schoolteacher.

Thanks for your replies - I really wasn't expecting any answers after I looked back at my initial rave, my apologies for the craziness of it. I guess my brain is all over the place. I couldn't delete it though because I replied to it, lol.

My GP is onto hurrying them up, they followed up today and I've got a tentative appointment to see someone at Ipswich hospital on Tuesday, just biting my nails until then and I do some more tests I guess.

I'm imagining cancer everywhere now, I have even talked myself into cutaneous cancer and cancer of the heart, so I'm trying not to speculate more. We've told some of my band members because my upcoming medical stuff impacts on shows we have coming up, but waiting until we know the full picture to tell the kids. I still don't know when or even whether to tell my parents, who are both in their 70's with their own medical problems that I don't want to make worse with stress. My mum in particular would be on my doorstep with a suitcase if she gets wind of it and that would just make everything that little more more stressed, she's lovely and all but full on. I think if my operation/chemo whatever they give me isn't going to take too long I could wait until afterwards to tell them so they feel like they have been kept in the loop but miss the awful waiting and not knowing part. I don't know really. How did you all go about telling your kids and minimising stress on everyone else around?

Weird question, we're recording music at the moment and I'm the singer. My band can lay down tracks in the studio without me there so they can forge ahead. How long will I be in hospital for a mastectomy, and do you think the healing chest scars will stop me taking deep breaths etc and how long does that take to heal? All I need to do is stand up and sing. Actually the standing up part is optional too. I'm going to be such a rotten patient, trying to sneak out to do rock and roll.

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Re: Just diagnosed and freaking out.

Postby jezza » Wed Feb 07, 2018 8:02 pm

Hi Rockchic

Yes...it's pretty hard to give opinions unless you come across someone who had a similar diagnosis. You will (or I certainly did) have various scans and tests before your op and that will give you a clearer picture of what's ahead. Lots of ladies on the forum have been through the public system and have found it outstanding AND no nasty out of pocket expenses to fork out for as well. I am a bit surprised that you haven't been given an appointment time for a breast surgeon yet. Make sure you are given a breast care nurse as well to contact when you get to talk to someone in your medical team, as they are a fantastic source of info.Maybe a hurry up call is needed.

Keep in touch and I hope you get some answers soon.

jezza xx
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Just diagnosed and freaking out.

Postby schoolteacher » Wed Feb 07, 2018 7:19 pm

Hi Rockchick
Apologies for the lack of replies. The forum has been quiet lately so I have been slack on checkingbin. I can’t answer any of your questions as I’ve never heard of the cancers you’ve described. We are not medically trained. Just been where you are.
I can relate to the worry about telling high school children. My daughter was about to start Year 12 exams when I was diagnosed. I was 50 when I had chemo so menopause hit later than you.
Keep us posted with your pending results and how you are going :hugs:
DX OCT 08, 9mm Her2+ grade 3 tumour and DCIS. Nodes clear, wide local incision, unclear margins so LB mastectomy, chemo Taxotere Carboplatin Herceptin Tram Flap Nov 2011

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Re: Just diagnosed and freaking out.

Postby Rockchick » Wed Feb 07, 2018 3:12 pm

I have worked out the answers to most of my questions - fairly sure they will scan me before any operation. And mucinous carcinoma is easily recognisable on some stain they do, so I expect they are right about the type too. Apparently it doesn't spread as quickly as many other types, but there are a worrying number of reports about simultaneous multiple primary tumours. I would put money on it being in both breasts and under my arms already at least, my underarms have been puffy enough to cut off circulation to my arms at night for about two years now.

Still waiting for the hospital to call for my appointment with a breast doctor or surgeon or whoever gets hold of me next. No sooner do I find an answer to something than another question pops up. More or less resigned to losing my breasts *sigh*. Although yeah. Bummer. I was just starting to like my boobs. On the upside maybe I'll be able to get me some big stripper implants and nobody could say a word in criticism.

I've been through a premature menopause and hormone therapy saved my life, literally felt like I was dying, so I'm expecting hormone suppressing therapy to be pretty rough. No oestrogen too early means getting booted forcefully into old age, I've been there. So I'm going to be dry, wrinkly, sloppy of muscle, probably bald at least for a while, and have a whopping great scar on my flatter than ever chest... and that's if I'm lucky. Bye bye any remaining vestiges of attractiveness. Really makes you prioritise what is important down to the bare essentials, after all who cares what I look like as long as I can get my kids through high school?

I'm staying positive, I have a really supportive husband and family and lots of friends who will rally around when I tell them. We're lucky to be financially secure so I don't have to worry about that. Horrified about having to put my kids through telling them at some stage but putting it all off for now until I know more myself. I can't believe so many people go through this and more, humans are amazing. You are all amazing.


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