Waiting for results but...

[AirIsUnderrated]

Hi, I'm 51 and peri-menopausal. I noticed a lump in my right breast before Christmas, then on checking more carefully, I found a couple more. I've had cysts drained twice before and thought it was the same again. But on Saturday the breast care centre found 2 cysts and 3 lumps across both breasts, and 3 abnormal lymph nodes in my armpit. I had needle biopsies and aspirations and am awaiting the results. The words they used were "suspicious" and "don't like the look of" and "it's a lot to take in". Nothing showed on the mammogram. My mammogram from last Feb was clear.

They also made me an appointment for next Thursday (alarmingly quick) and told me to expect a breast MRI appointment in the post. I just looked up the name of the person the appointment is with and she's an Oncoplastic Breast Surgeon.

No results have been received yet at my GPs' surgery. Nobody has told me I have cancer, but I'm not stupid, and all the arrows are pointing in the same direction.

I need to be patient and keep calm, I know that! But it's not looking hopeful, is it?

Please, some words from the wise?

[Mary115]

Aris Well I do not have words from the wise, but I am caring and I do remember the strain of waiting for what I already knew seemed evident from staff reactions. The not knowing and confirming was the hardest. I tried to tell close friends but got the reaction of "Be positive". Did not help. What I needed was planning time if I could not work for awhile.I found Cancer help lines helpful.. SHARE has a good helpline. So does the American Cancer Society. What we go through is hard. Sometimes really really hard but I have found that we do not go through it alone. We are together in our journey and even during Covid time we can find individuals and groups to rely on for shared strength.

Together.. It got so much better for me once I knew when i had a diagnosis and had a plan of action.. Then the worrying seemed to lesson as i got into action, and met wonderful women doing the same.. My radiation team was wonderful and my followup has produced new friendships. One of the hardest things going through cancer can be the loneliness. I found connection with others who "Got it" and "Been through it" and together we go forward.

[AirIsUnderrated in reply to Mary115]

Thank you so much. Yes, the suspecting but not knowing for sure is pretty horrid. I can plan once I know. For example, I need to know whether to warn my work, and what to tell family and friends. This is limbo. I'll check out your suggestions. 🥰

[Mary115 in reply to AirIsUnderrated]

Here is the resource which was helpful for those late night worries.The American Cancer Society also has people who can talk you through decisions. 1-800-227-2345. "Whether it's the middle of the afternoon or the middle of the night, our cancer information specialists are here to help. "

I will be thinking of you .. and even it is through cyber space you are cared for by someone who has traveled a similar path..

The SHARE hotline helped too... lots

[AirIsUnderrated in reply to Mary115]

I’m in the UK but we have similar resources. It’s comforting to know that they’re there if I get desperate.

[Mary115 in reply to AirIsUnderrated]

Hi Airis Underaterrated. I found Cancer Research UK . I would be interested in your opinion /recommendation on this and/or others.. Cancer Research UK: " You can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. "

[AirIsUnderrated in reply to Mary115]

Bless you! 🥰 Thank you, I'll check out the website tomorrow.

[Mary115 in reply to AirIsUnderrated]

Hi Arias . Hope you can find some live conversation in addition to the forum. Seems during this isolation time, we need it all the more..

[AirIsUnderrated in reply to Mary115]

I'm incredibly fortunate with my support. I have an amazing husband, a precious Mum who used to be a nurse, dear friends, a church community - and I work in a GPs' surgery. I couldn't want for more, really. Well just results. I really, really want my results so that I can plan my 2021.

I was washing my hair this morning and instead of only thinking about how sore my chest still is, it suddenly occurred to me that I could lose my hair. I know, that's just borrowing trouble at this stage, but that's the kind of thought that invades. I suppose if I do lose my hair, at least I won't need a hairdresser in lockdown!

[Mary115 in reply to AirIsUnderrated]

Wow.. You are fortunate to have such a team supporting you.. I suspect that the support is really reciprocity, and you have been there for them too.. Oh the hair thing.. It is a challenge, and I like your sense of humor about it.. Hmmmm. We do get through.. I am amazed at the beautiful compassionate women I have come close with, since joining their groups.. They have been a gift along with my husband who has always been there.. We continue on..

[AirIsUnderrated in reply to Mary115]

Of course I've been there for them. 😀 That's what we all do, isn't it? It's just this is the first time I've needed support from others, and I'm not very good at it!

Off to Google what makes us lose our hair...

Thank you! 🥰

[Mary115 in reply to AirIsUnderrated]

Me too... Not very good at receiving support, but learning too. Learning together

[AirIsUnderrated in reply to Mary115]

Mary, please would you mind telling me your diagnosis? Your story? I'd be really grateful.

[Mary115 in reply to AirIsUnderrated]

I mind but if you think it would be helpful to you, I will do a bit.

Endometrial Cancer 9 years ago. Complete removal of everything.

One year and a half ago : Breast Cancer lumpectomy surgery, radiation, and taking anastrozole one year ago. Onc score indicated chemo. Doctor suggested a wait and see policy and start with radiation and anastrozole.

6 months ago spot on lung.. Three Doctors "Looks like cancer, irregular"

3 month scan. same small size. Continue with anatrozole with regular scans. Next onc meeting in one month.

Doctor summary in regards to precautions for covid : " Chronic conditions including cancer". I wear a DNR bracelet. There are details and more story in other posts in the forum.

[AirIsUnderrated in reply to Mary115]

I can’t click the Like button for that. 😟 Thank you for being so giving! Stay safe X

[anrean]

It is very hard to wait, but it is the only option. I found that making contingent plans while waiting helped - at least there was a blueprint if the news was malignant. It sounds terrible to say, but don't jump into the definite camp until it really is definite. Just be prepared.

[AirIsUnderrated in reply to anrean]

That’s very true. Just the job title Oncoplastic Surgeon says ‘cancer’ to me, but I suppose if they do a lumpectomy on both sides even if they’re benign, they’ll still want to talk about reconstruction. I’m only 32C poached-egg-in-a-sock style so I’d be concave if they removed much!

[anrean in reply to AirIsUnderrated]

I didn't have reconstruction - I'm small like you, and didn't want to go through it. Each person is different, and each surgery is different. Do what you think is right!!

[AirIsUnderrated in reply to anrean]

Do you mind my asking, do you still have feeling there? Apologies if I’m being too personal.

[anrean in reply to AirIsUnderrated]

Yes, I do. It was numb for awhile, but feeling came back

[AirIsUnderrated in reply to anrean]

Thank you. Do they have any control over the sensation that you get back?

[Knapweed]

It is horrid how mammograms can be 'clear' and then those lumps change in nature over time. I had a very similar scenario and had been ignoring a lump as 'benign' because it had been there but not showed up. The speed of appointment is brilliant and if it is still happening despite CoViD that is even better - it is a positive - in UK at least I was so impressed with the process - it does whisk you along and as someone else has said on here, it gives you a lot to think about. It is completely normal to find out the diagnosis bit by bit as each scan and biopsy tales place, including after surgery when tissue samples are taken. Hang on in there and this groups is really helpful - and there are some good Fb groups too, mainly for further into the journey

[AirIsUnderrated in reply to Knapweed]

Thank you. You’re in the UK too? That’s comforting to know. 😊

[Mmnyc]

Hi, The waiting can be the worst part. I do remember that time. The googling at 3 in the morning. All the anxiety and just thinking about the ‘future’. I’m not pessimistic but I’m a realist so I knew when they sped up my appointments that it did not look good for me. They didn’t use those words with me that they did with you.

Now, recently my friend who is only 34 and had some leakage from both breasts, went in for a mammogram. At that appointment the person who does the mammogram literally used the same words ‘not liking good’. Apparently the mammogram picked up ‘suspicious’ areas in both breasts. She was devastated. They sped up a needle core sonogram and both the doctor and the lady who does the sonogram told her the same thing. We all prayed and prayed. Thank the lord that the biopsy revealed all those ‘suspicious’ areas were benign. So as you can see everything can seem bleak for some of us but it may not turn out that way for you.

And if it does turn out the other way, we are here for you💕

[AirIsUnderrated in reply to Mmnyc]

Thank you. Yes, that’s also true. I think I’d rather prepare for the worst and be happily surprised than the reverse. 😀

Oh yes the middle of the night worrying! I’ve always been lucky enough to sleep pretty well, but every night since Saturday I’ve woken at 4am with a whirring brain for an hour. Why 4am???

[Mmnyc in reply to AirIsUnderrated]

I hear you!! My time was 3:30 am 🤯🤯and then I would be up for the rest of the morning.

[AirIsUnderrated in reply to Mmnyc]

Oh that stinks. How long did it go on for? Please tell me it isn't still happening?

[Mmnyc in reply to AirIsUnderrated]

I was diagnosed officially in May of 2019 so the waking up around 3:30 really began around April because I knew something was wrong based on the quick appointments they were giving me. For the most part it has subsided. I’ve always struggled managing my anxiety (nothing to do with BC) so when I get anxious I do end up waking up around 3:30 (now it’s not my BC that keeps me up though- just regular life stuff).

I try to listen to Joel Osteen to calm down and go back to sleep, sometimes it works, sometimes it doesn’t 🤷🏻‍♀️

[AirIsUnderrated in reply to Mmnyc]

Sometimes the regular life stuff on top of all this is enough to push you over the edge, isn't it? Or maybe it's the other way round. Hugs.

[SeattleMom]

Hello AIU,Your MRI will give you much more detailed information than the mammogram. Has any doctor recommended a biopsy of the lymph nodes?

My advice would be that, as much as possible, remain hopeful and calm. Most of us on this site, including me, have MBC. From my perspective, someone who was cancer free for 17 years following my initial BC, I’d accept the possibility of BC and then treat it with the very best protocols available. And get two or three consults before selecting an oncologist.

God bless you! And prayers for your results and potential treatment.

🙏🏻🙏🏻💗💗

[AirIsUnderrated in reply to SeattleMom]

Thank you. I’m in the UK so no choice of oncologist - I get who I get. But I’m not worried about that.

She couldn’t do a needle biopsy of my lymph nodes because they were all too near to a major blood vessel, but she did a needle aspiration and hoped it would be enough. She said it might not be and I might need to have it done again. That part took ages and was the bit she described as “technically challenging”.

Less than 6 days left to wait...

[SeattleMom in reply to AirIsUnderrated]

💗💗🙏🏻🙏🏻

[AirIsUnderrated in reply to SeattleMom]

I've spent the weekend reading, reading, reading, and learning what all these acronyms mean. I do have a slightly medical background, but not in cancer. This is a new world to me. It will be interesting to know whether my suppositions based on my reading are right. 17 years cancer free is a fantastic testimony to modern medicine and care. 👍

[PJBinMI]

I was in a very similar position in 2004, with the surgeon telling me that my breast thickening was "highly suspicious" for cancer. In the long run, I have been very grateful that he and other medical folks were quite direct in talking with me. I dove in head first, going to the closest book store and examining all their books on cancer and especially breast cancer. I had bone metastasizes from the beginning and have done exceptionally well and learned all I have been able to. Alot of us with breast cancer, even stage 4 metastatic bc, do well but getting a good oncologist helps. I hope you will have good support from friends and family whatever the results of the tests are. Know we will be here for you.

[AirIsUnderrated in reply to PJBinMI]

Hugs to you. Did you have no other warning signs? Even looking back retrospectively?

[Zabadak]

I am sorry you have been left feeling unsure. I think suspicious is them preparing you. But until you get the scan they can’t confirm. I feel very lucky to be in Scotland. When I found a lump in my armpit I was sent to the Edinburgh Cancer Centre where all the tests are done in the morning and you know the score by mid afternoon. I had mammogram, ultrasound and needle biopsy. I was told it was cancer and then went within a week for CT scan and bone scan. I discussed the options with the surgeon. I needed heart scans due to another condition, but within eight weeks I was done and dusted- in my case a lumpectomy and Axilla clearance followed by five day course of radiotherapy. It’s a multi disciplinary team in a self contained centre so scans, surgery and oncology all done in one place. And all this done during the COVID-19 lockdown. It was terrifying to hear the diagnosis but the smooth movement through the process was so reassuring. I have my own breast care nurse that I can phone at any time, and as they are part of the team, they can get an answer to any issue I have ongoing.

[AirIsUnderrated in reply to Zabadak]

Thank you for the reassurance. That sounds like amazing care and I’m very glad for you that it wasn’t a protracted treatment, and presumably successful? How could they tell the results the same day? I was told my biopsy results might not be back by 2 weeks. Maybe it was complicated by their being unable to see anything on the mammogram?

ETA: less than 4 days to wait...

[Zabadak in reply to AirIsUnderrated]

I guess the biopsy gave enough info to say it was malignant. I saw the surgeon a week later and he confirmed the detailed type and stage. It’s a one stop shop, all they do is breast cancer. I’ve been told this unit is one of the best in the world.

[AirIsUnderrated in reply to Zabadak]

It sounds like it. I had the mammogram, then the ultrasound, then the biopsies (I lost count after 3 on one side and 4 on the other)/titanium markers and finally another mammogram all in 3.5 hours. Then, having stopped me from asking anything or looking at the u/s screen for over an hour and a half, the doctor had me get dressed for the umpteenth time and then asked if I had any questions, and like an idiot I didn't. I should have asked "Tell me what you did. What did you find? What do you think?" but having been told to keep quiet and let her concentrate, I presumed that she wasn't prepared to commit herself at this stage. So I just said no, but I'd probably think of loads of questions once I left. That was when she interrupted me with "it's a lot to take in" and told me to make a list. I have. It's getting longer and longer! But I wish I had asked at the time.

Were you told? Or did you have to ask?

[Zabadak in reply to AirIsUnderrated]

The way it worked for me was an initial exam by a doctor, who could feel a lump in my breast and one lymph node was swollen. Went for scan.They said nothing at the Mammogram but during the ultrasound I was told I had two areas that looked abnormal. They did a needle biopsy and I had to wait in the lounge for a bit. I guess I knew that it was not good as two previous lumps that were harmless were diagnosed just by the ultrasound and I didn’t need a biopsy. Plus she put in the markers. That’s so they can find the tumour easily in surgery. The second mammogram checks that the markers are in the right place. We both saw the doctor who first examined me and she came straight out with it. You have breast cancer. It was a shock, even though I was prepared by them inserting markers. I was immediately booked for all the detailed scans, met the surgeon etc. I have a heart issue so they arranged cardiac scans and a full assessment by an anaesthetic consultant. I am currently cancer free, but on drugs to help prevent any cancer appearing as my tumour was estrogen feeding. I have some skin problems with the radiation and lymphoedema in my breast and arm because they took my lymph nodes away. But no cancer remaining right now. I feel very lucky so far!